World Edition 2014
Brain Tumour You are not alone on this journey...
INSPIRATIONAL SURVIVOR STORIES n
INTERVIEWS WITH MEDICAL PROFESSIONALS n
Meet “Staff Sergeant” Andrew Kennedy, Age 7 PLUS: Stories from around the world: USA, TURKEY, UK, CANADA, AUSTRALIA, BELGIUM, TAIWAN, SOUTH AFRICA, SINGAPORE and others
PROGRESS AGAINST MEDULLOBLASTOMA …a timeline through the decades
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INSIDE INFO ON BRAIN TUMOUR EMAIL DISCUSSION GROUPS n
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ARTICLES ON ADULT AND PEDIATRIC BRAIN TUMOURS n
Produced by the International Brain Tumour Alliance (IBTA) Brain Tumour
GREATER COLLABORATION n GREATER KNOWLEDGE n GREATER HOPE
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k l a e W h T d n u o Ar
d l r o W n i a r B For mours Tu
a project of the
Walk Around the World for Brain Tumours! Organise a sponsored walk to raise awareness of and funds for more research and support. Walks can be done anytime between
1 January & 31 December 2014 The IBTA doesn’t want any of your funds raised. These should go to local brain tumour support groups or relevant research institutions. We would like you to symbolically “donate” to the IBTA only the mileage achieved by you on your walk. Walks can also take place during the International Brain Tumour Awareness Week (26 October to 1 November 2014) when groups and individuals around the world will organise scientific meetings, patient conferences, TV interviews, press releases, etc in order to raise awareness about brain tumours. For your organisation or group to be a “supporter” of the “Walk” and “Week” please contact the IBTA Chair as below. The IBTA requires no financial commitment or fee to be paid to us by you. All we are asking for is your enthusiasm in supporting and promoting these events and for allowing us to add your name to our list of supporters.
For more information please visit www.theibta.org or contact chair@theibta.org
Contents WORLD EDITION 2014
n “Staff Sergeant” Andrew Kennedy, Age 7. . . 6
n Glioma and Pregnancy
n Mind the Gap!
n The First World Summit of
By Hanneke Zwinkels. . . . . . . . . . . . . . . . . .46 n An Interview with Dr Tracy Batchelor. . . . . . 48 n Supporting Children with Brain Tumours and Other Cancers in South Africa by Bonita Suckling. . . . . . . . . . . . . . . . . . . . 50 n Deciding What Matters Most in Brain and Spinal Cord Tumour Research. . . . . . . 52 n Understanding Brain Tumor Statistics by Carol Kruchko. . . . . . . . . . . . . . . . . . . . . . 54 n Counting Brain Tumours in Canada by Jennifer Gouchie. . . . . . . . . . . . . . . . . . . 56 n Brain Trekking in Hong Kong by Dr Danny Chan. . . . . . . . . . . . . . . . . . . . .57 n Progress Against Medulloblastoma by Dr Vijay Ramaswamy and Dr Eric Bouffet. . . . . . . . . . . . . . . . . . . . 58 n BETHYD – The Turkish Brain Tumour Patient and Caregivers’ Association by Nihat Karaoglu. . . . . . . . . . . . . . . . . . . . . 60 n An interview with Dr Max Barros. . . . . . . . . 62 n Glucose and Brain Tumours by Dr Minh Thi Tieu & Dr Caroline Chung. . . . . . . . . . . . . . . . . . . . . 64 n Brain Tumour Society (Singapore) – a Seed Grown from the IBTA World Summit by Melissa Lim. . . . . . . . . . . . . . . . . . . . . . . 66 n To the End of the Earth for Ronnie by Niall Roche. . . . . . . . . . . . . . . . . . . . . . . . 68 n Helping Others While Sharing my Passion for Creativity by Kristin Odom . . . . . . . . . . . . . . . . . . . . . . 70 n Captain McGale Has a Brain Tumour by Lia Le Roy. . . . . . . . . . . . . . . . . . . . . . . . . 74 n Music Speaks What Cannot Expressed by Alison Ware. . . . . . . . . . . . . . . . . . . . . . . 76 n Caring for Children and Teenagers with Brain Tumors in Taiwan by Lilyan Song. . . . . . . . . . . . . . . . . . . . . . . . 78 n Now for a Second University Degree after Brain Tumour Surgery by Wallis Stabler. . . . . . . . . . . . . . . . . . . . . . 79
by Dawn Hamill. . . . . . . . . . . . . . . . . . . . . . 80 n Life Before Cancer: a Love Affair With the Past by Karissa Kneeland. . . . . . . . . . . . . . . . . . . 82 n An interview with Dr Robert Fink. . . . . . . . . 84 n Focus on Colombia by Dr Gabriel Vargas. . . . . . . . . . . . . . . . . . . 86 n Brain Tumour Awareness Day in Argentina by Dr Alejandra T Rabadan. . . . . . . . . . . . . 87 n Supporting Organisations for the IBTA’s 2013 Awareness-Raising Activities. . . . . . . 88 n University of Cincinnati (UC) Brain Tumor Center Run/Walk. . . . . . . . . . . . . . . . 89 n Hope vs Realism - a Survey of Brain Tumour Magazine Readers by Denis Strangman. . . . . . . . . . . . . . . . . . . 90 n An Interview with Dr Gaetano Finocchiaro. . . . . . . . . . . . . . . . 92 n Brain Tumors in The Netherlands by Jelle Jan de Vries and John de Bruin. . . 94 n An interview with Dr Erwin G Van Meir. . . . 96 n Brain Tumour Foundation (Cayman Islands) – “The Forgotten” by Brenda J Archer. . . . . . . . . . . . . . . . . . . . 98 n Hunting for Better Therapeutic Targets by Dr Maite Verreault. . . . . . . . . . . . . . . . . 100 n Supporting People with a Diagnosis of a Brain Tumor is my Passion in Life by Cindy Villarreal. . . . . . . . . . . . . . . . . . . . 102 n The Story of Brainwaves NI by Kate Ferguson. . . . . . . . . . . . . . . . . . . . 104 n Walking Around Australia’s Coastline for Brain Tumours. . . . . . . . . . . . 105 n Track the Tractor By Darren Hayes. . . . . . . . . . . . . . . . . . . . . 106 n Supporting Organisations for the IBTA’s 2014 Awareness-Raising Activities. . . . . . 107 n Brain Tumour Organisations Offering Support and Information. . . . . . . 108 n Other Organisations and Sources of Information. . . . . . . . . . . . . . . . 114
Brain Tumour Patient Advocates. . . . . . . . . . 8 n An interview with SNO President Dr David A Reardon . . . . . . . . . . 10 n Amy Pejkovic - Back on Track After Having a Brain Tumour Removed. . . . . . . . 12 n An interview with Dr Patrick Y Wen. . . . . . . 14 n Why Not Me? by Lynda Tse. . . . . . . . . . . . . . . . . . . . . . . . . 16 n The IBTA Year. . . . . . . . . . . . . . . . . . . . . . . . . 18 n EORTC’s SPECTAbrain for Patients with Neurological Cancers by John Bean. . . . . . . . . . . . . . . . . . . . . . . . .20 n Navigating Your Way Through Brain Tumor Online Support Groups by Al Musella. . . . . . . . . . . . . . . . . . . . . . . . . 22 n Our Dad by Ga Vin and Ga Rick Lee. . . . . . . . . . . . . 25 n An interview with Dr Rahul Krishnatry. . . . . 26 n An Interview with Dr Keith L Black. . . . . . . . 28 n Don’t Frown Because it’s Over… Smile Because it Happened by Bunny Leach. . . . . . . . . . . . . . . . . . . . . . 30 n RANO Criteria: a New Yardstick to Measure Benefit of Treatment by Dr Kurt A Jaeckle . . . . . . . . . . . . . . . . . . . 32 n A Test of Courage and Strength by Mary Ellen Maher. . . . . . . . . . . . . . . . . . 34 n Good Genetics or a Good Marriage: What’s More Important in Surviving Glioblastoma? by Dr Virginia Stark-Vance. . . . . . . . . . . . . . . 36 n Grandma, the Neurosurgeon, a Tree and Me by Lanette Veres. . . . . . . . . . . . . . . . . . . . . . 38 n “Overcoming a brain tumor has been my greatest triumph and source of strength” by Zack Hubbard. . . . . . . . . . . . . . . . . . . . . .40 n 5-ALA: An Aid for Identifying the Infiltrative Margins of Malignant Glioma By Professor Walter Stummer. . . . . . . . . . . 42 n An interview with Dr Jonathan Finlay. . . . . 44
Cover photo: “Staff Sergeant” Andrew Kennedy (age 7) and Royal Canadian Mounted Police Constable Jeff Wilson. Photo courtesy of Brian Taylor, email brian@taylorphoto.ca Magazine design by Edwina Kelly, email: edwina@edwinakellydesign.co.uk 3
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LETTER FROM THE EDITORS
Published by The International Brain Tumour Alliance (IBTA) Editorial Kathy Oliver, Denis Strangman (Editors) Chris Tse, Sally Payne, Jeanne Pasmantier, Jenny Baker (Editorial Assistants) Magazine Design Edwina Kelly Design (edwina@edwinakellydesign.co.uk) Cover photograph Photo courtesy of Brian Taylor, brian@taylorphoto.ca, http://www.taylorphoto.ca Copy With warm thanks to all our contributors, interviewees and colleagues in the international brain tumour community Printing Wyndeham Heron, Maldon, Essex, UK Distribution Worldwide Mailing Solutions Ltd, Lancing, West Sussex, UK Brain Tumour is published by the International Brain Tumour Alliance (IBTA), a not-for-profit, limited liability company incorporated in England and Wales, company registration number 6031485. International Brain Tumour Alliance (IBTA) PO Box 244, Tadworth, Surrey, KT20 5WQ, United Kingdom © 2014 International Brain Tumour Alliance (IBTA) DISCLAIMER The International Brain Tumour Alliance (IBTA) has made every effort to be accurate regarding the information contained in this magazine. The IBTA accepts no liability for any inaccuracies or omissions herein nor can it accept liability for any loss or damage resulting from any inaccuracy in this information or third party information. The information contained in this magazine is for educational purposes only. The material in this magazine is in no way intended to replace professional medical care, advice, diagnosis or treatment from a doctor, specialist or healthcare professional. For medical help and advice please consult your doctor. Company sponsorship of the IBTA mentioned in this magazine does not necessarily imply the IBTA’s endorsement of any particular form or forms of therapy, devices, medical regimens, plans or behaviour referred to, promoted, manufactured or distributed by those companies. The views expressed in this magazine are not necessarily those of the International Brain Tumour Alliance. It is not the intention to print any matter that discriminates on the grounds of race, sex, sexuality, belief or disability. The IBTA takes no responsibility for the content of third party websites mentioned in this magazine. With regard to any advertisements in this magazine (the spaces for all of which have been offered by the IBTA to companies and organisations gratis), the IBTA has included these advertisements in the magazine in good faith and on the basis that they have been cleared for acceptable content in a consumer magazine through the relevant company’s and organisation’s appropriate legal channels. The IBTA accepts no liability for or responsibility for the information/content appearing in such advertisements in this magazine. The IBTA welomes the ABPI (Association of British Pharmaceutical Industry) Code of Practice (effective in the UK), the CHF/ MA (Consumer Health Forum/Medicines Australia) Working Together Guide and Manual (effective in Australia), the EFPIA (European Federation of Pharmaceutical Industries and Associations) Code of Practice on Relationships Between the Pharmaceutical Industry and Patients’ Organisations and the Healthcare Industry, and other relevant national and international indusrty-patient guidelines, and endeavours to work within their recommendations. Items in the magazine (except those with original copyright) may be reproduced for the benefit of patients and caregivers as long as appropriate credit is given to the IBTA. Please contact us for information on reproducing articles in this publication. For further information on the IBTA’s sponsorship and transparency policy, please see www.theibta.org VARIATIONS IN SPELLING Spelling in this publication varies according to countryspecific practices and is thus variable throughout the magazine. For example, the word ‘tumor’ is spelled as “tumor’ in the United States but “tumour” in the United Kingdom and Australia. Sometimes the term “neuro oncology” is expressed without a hyphen and at other times with a hyphen as in “neuro-oncology”. To preserve the international nature of this publication, the IBTA has varied the spelling accordingly.
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Dear Reader, THIS is the fifth annual edition of Brain Tumour magazine and within its pages we hope you’ll find many items of interest. Brain Tumour has a very diverse readership – from newly diagnosed brain tumour patients and caregivers to long-term survivors, medical specialists, researchers, nurses, allied healthcare professionals, regulators, key opinion leaders, politicians and many others from a variety of backgrounds in 110 countries around the world who are interested in the neuro-oncology field. So deciding on the content of the magazine is always a challenge - we want to appeal to as many members of the international brain tumour community as possible. We hope we have achieved this in the 2014 edition. We would like to thank the many contributors to this magazine from around the world who have shared their stories, their expertise and their time to provide us with such lively, informative content. Thanks must also go to the IBTA’s advisors and volunteers who give so generously and freely of their time in helping us serve the international brain tumour community. With best wishes,
Kathy Oliver (incoming Chair) Denis Strangman (retiring Chair) Articles in Brain Tumour magazine may be reproduced for the benefit of patients and caregivers as long as appropriate credit is given to the International Brain Tumour Alliance (IBTA) and originating authors. Please contact chair@theibta.org for permission. For extra single and bulk copies of Brain Tumour magazine and enquiries about postage and freight costs, or for enquiries about electronic versions of the magazine (including back issues), please contact chair@theibta.org
We also wish to thank our industry sponsors for their generous grants in support of the 2014 magazine as well as their support of the “First World Summit of Brain Tumour Patient Advocates”, the “International Brain Tumour Awareness Week” and the “Walk Around the World for Brain Tumours”. “The Walk” and “The Week” initiatives are now in their eighth year..
“STAFF SERGEANT” ANDREW KENNEDY, Age 7
The young “Mountie” on this year’s cover of Brain Tumour magazine ANDREW Kennedy is seven years old. He was diagnosed in October 2011 with a brainstem glioma. He is followed by the IWK oncology team in Halifax, Nova Scotia, Canada and a local pediatrician. He presently receives chemotherapy at home once a month. The IWK title is derived from the name of a man - Izaak Walton Killam - in whose memory a pediatric hospital was built. For Andrew’s seventh birthday, he received a special “gift” - a ride to school with the Royal Canadian Mounted Police (RCMP) School Liaison Officer, Constable Jeff Wilson, after being made an honorary member of the New Minas, Nova Scotia RCMP detachment. New Minas is a community near to where Andrew and his family live. Janet Fairclough, Andrew’s mother, said: “The New Minas RCMP detachment first met Andrew in the autumn of 2012. Retired Constable Norm Branch (a school liaison officer) became friends with Andrew and introduced him to other officers and staff at the detachment. Andrew’s father George and I know one of the civic employees who helps keep everyone updated on Andrew’s adventures. We also take Andrew in for visits to the detachment when time and schedules allow.” The detachment made Andrew an honorary member because they wanted to do something special for his seventh birthday. They had lots of help from other RCMP and police detachments throughout Nova Scotia and across Canada who sent gifts and cards to him. Andrew even received gifts from others who saw his story on the Canadian CTV news. Janet Fairclough said: “Andrew loves to wear his RCMP uniform for special occasions and school concerts. He also wore it for Halloween in 2013!” n Right: Constable Jeff Wilson (left) Royal Canadian Mounted Police (RCMP) School Liaison Officer, and “Staff Sergeant” Andrew Kennedy (right). Photo courtesy of Brian Taylor http://www.taylorphoto.ca/
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Above: Andrew wearing his Royal Canadian Mounted Police uniform and Calgary Police hat which was given to him by Constable Troy Redden. Photo courtesy of Brian Taylor http://www.taylorphoto.ca/
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ASSOCIATION of NEUROONCOLOGY
October 9-12
TURIN, ITALY
Lingotto Convention & Exhibition Centre
www.eano.eu
See you!
The EUROPEAN
2014
11th MEETING
EANO14_Inserat_124x175 25.02.13 15:26 Seite 1
The First World Summit of Brain Tumour Patient Advocates
INTERNATIONAL BRAIN TUMOUR ALLIANCE
Global meeting of leading brain tumour patient organisations attracts 60 participants from 20 countries
Above: The sixty participants at the First World Summit of Brain Tumour Patient Advocates held in Lafayette, California in November 2013 came from 20 countries Photo © Paolo Salcido (www.salcidoarts.com) reprinted with permission
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early two years in the planning, the “First World Summit of Brain Tumour Patient Advocates” – organised by the International Brain Tumour Alliance (IBTA – www.theibta.org) – provided a unique opportunity to meet like-minded people from around the globe, exchange ideas on best practice, challenges and advocacy experiences, and build new relationships between organisations and individuals in the advocacy arena. The two-day Summit was held in Lafayette, California near San Francisco in November 2013 just prior to the SNO/ 8
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WFNO (Society for Neuro-Oncology/World Federation of Neuro-Oncology) meeting. It brought together, for the first time ever, over 60 dedicated brain tumour patient advocates representing the main support, advocacy and information charities and not-for-profits from 20 countries around the globe. IBTA Chair Denis Strangman (Australia) said: “It was gratifying to witness all the participants jumping into a high level of discussion so quickly and it was great to see all the animated interaction between everyone throughout the whole Summit.” In her welcome presentation at the
“It was gratifying to witness all
the participants
jumping into a high level of discussion so quickly…”
Summit, IBTA Co-Founder and Co-Director Kathy Oliver (UK) - who, as the new IBTA Chair, replaces Denis Strangman who is retiring - explained that, when the IBTA was established eight years ago during the SNO/WFNO Conference in Edinburgh, the World Summit was just a twinkle in her and Denis’ eyes at that time. Following the meeting at Lafayette, Kathy said: “The world of brain tumour patient advocacy had never seen anything like the Summit before. It was a very inspirational experience where we were able to all come together in a highly collaborative spirit and share ideas from our various experiences and organisations for the benefit of brain tumour patients and caregivers around the world.”
“Helping to create
a promising, hopeful future for brain
tumor patients is paramount to the IBTA.”
She added: “Helping to create a promising, hopeful future for brain tumor patients is paramount to the IBTA.” The Summit was an idea conceived by the IBTA after witnessing how successful such a conference could be for other sitespecific cancer advocates, such as those from the kidney cancer, chronic myeloid leukaemia and sarcoma communities. Attendance at the Summit was by invitation and participants came from Argentina, Australia, Belgium, Canada, Denmark, India, Ireland, Italy, Japan, Lithuania, Netherlands, New Zealand, Norway, Singapore, Spain, Sweden, Taiwan, United Kingdom, United States, and Zimbabwe. “The Summit included different types of session formats and this gave all participants the chance to take part in a way in which they felt comfortable,” said Denis. “We included a number of workshops and plenaries as well as providing plenty of networking time.” 9
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“ The world of brain tumour patient
advocacy had never
seen anything like the Summit before.”
Planning for the Summit involved raising sufficient funding so that financial assistance was offered to brain tumour patient advocates to attend from the far corners of the world. A team of eleven IBTA advisors provided help, advice and support throughout the project, from its conception to its delivery. The main theme of the Summit was “collaboration and sharing”. The 48-hour conference was professionally facilitated by a leading patient advocacy expert. The Summit was collegially designed so that nearly all of the participants either presented in a plenary session; spoke as part of a panel, ran a workshop or marketplace; acted as rapporteurs; or assisted in a practical way to ensure a smooth meeting. One of the highlights of the Summit was a keynote presentation by Dr Susan Chang, past President of SNO. Dr Chang gave an excellent overview of current brain tumour treatments and was on hand afterwards to answer questions and participate in other Summit sessions. Collectively, the brain tumour advocacy leaders at the Summit represented over 500 years of experience in helping patients, their caregivers, and families on their journeys. Forty-two of the participants were either brain tumour patients
“ The challenges the
brain tumour patient and caregiver face
are truly universal.”
themselves, current brain tumour caregivers, or former brain tumour caregivers. Following the IBTA Summit, and if they wished, participants could attend the SNO/WFNO meeting in San Francisco. For some advocates, this was the first time they had attended a high-level, international scientific conference of this kind. SNO had been particularly supportive of the IBTA’s plans for the Summit. One Summit participant said: “It was an enlightening experience to listen to the stories [from] across the globe. The challenges the brain tumour patient and caregiver face are truly universal. Everyone shared so many remarkable stories of faith, endurance and hope. It was sad for all the loss, but amazing to hear how many people are making a difference for others…[on] the brain tumour journey.” A detailed report of the First World Summit of Brain Tumour Patient Advocates will be released shortly. Details about the Report’s availability will be published in the IBTA e-newsletter and on the IBTA website at www.theibta.org n
INTERNATIONAL BRAIN TUMOUR ALLIANCE
Be informed Read the monthly e-news bulletins distributed by the International Brain Tumour Alliance (IBTA) for information from within the international brain tumour community. Go to the IBTA website (www.theibta.org) and click on the subscription link.
SNO President Dr David A Reardon on the present and future of brain tumor research and treatment DAVID A Reardon, MD is Clinical Director at the Center for Neuro-Oncology, DanaFarber Cancer Institute, Boston, USA. He is also Associate Professor of Medicine, Harvard Medical School, Cambridge, USA and the current President of the Society for Neuro-Oncology (SNO).
further research. My hope was to help make the same type of impact for other cancers.
IBTA: Where did you spend your childhood? David Reardon (DR): I was born and raised in a suburb about ten miles outside of Boston, Massachusetts, USA. IBTA: Did you come from a family environment that had a connection with medicine or research? DR: I was the “rebel” of the family who opted for medicine. My father is an engineer and his side of the family was all involved in commercial construction. I have two brothers, one of whom is an engineer and the other is an economics professor. IBTA: What attracted you to medicine and to the brain tumour area specifically? DR: Looking back, it is a bit ironic that I ended up in medicine. I distinctly recall as an accident prone kid who spent more than his fair share of time in emergency departments for broken bones and various sutures - vowing to avoid hospitals at all costs when I grew up. As I got a little older, that terror was gradually replaced as I realized how satisfying it is to help people in times of need. I also enjoyed my science classes the most during my formative years. I then spent a summer working the midnight shift in a local ED [emergency department] as an aide. Putting these factors together logically led me toward medicine in college. The more I learned, the more it felt like the right fit for me. I also liked the idea of being an indefinite student – although we graduate, 10
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Above: The Reardon family: (back row) David and wife Beth, (seated left to right) daughters, Delaney, Meaghan and Calleigh joined by their two dogs, Moose and Bella
medicine is a field where ongoing, continuous learning is imperative. Oncology initially appealed to me because I always liked specialties that treat the whole person. Going through training, I narrowed my choices to either critical care or oncology. Eventually, the relationships with patients and families, as well as the potential for research and making a contribution at a broader level won out, and I headed to oncology. At the time, I was also focused on pediatrics, not only because I enjoyed kids, but because disease in children seemed purer, and not impacted by lifestyle choices which was much more apparent for adult illness. I was also highly inspired by the story of childhood leukemia – specifically, how a couple of decades of intensive research transformed what had been an incurable illness with a median survival of six months, to a disease where 70 to 80 percent of kids became long-term survivors. Now of course, the cure rates are even higher thanks to
IBTA: What, in your opinion, are some of the biggest challenges for clinicians working in the field of neuro-oncology today? DR: A major challenge is translating the multitude of significant insights recently gained regarding the biology of central nervous system (CNS) tumors into effective therapeutic strategies to improve outcome for patients. Thanks to extensive efforts committed at the basic science level, we have learned a tremendous amount regarding fundamental biology underlying phenotypic features of many CNS tumors including glioblastoma. In parallel, an explosion of novel therapeutics has occurred including therapeutics to block mediators of key functions of cancer cells. Nonetheless, a major disconnect remains where these extraordinary advances have failed to translate into better treatments for many types of CNS tumors. Another challenge is with metastatic tumors to the brain. These tumors are ten to fifteen times more common than primary brain tumors, yet therapeutic efforts have yielded disappointing results to date. More research focusing on why some tumors choose to metastasize to the CNS while others do not, may provide key insights that could lead to more effective therapeutic strategies. On the clinical side of our field, we need to think out of the box and come up with more effective clinical trial designs. As previously mentioned, there fortunately is a rapidly growing listing of exciting novel cancer therapeutics. Our challenge as clinical/translational researchers is to develop innovative clinical trial designs to more rapidly identify agents to invest more resources into as well as those that
should be abandoned rapidly. Another challenge unique to neurooncology that remains under-prioritized is the issue of effective delivery of agents into the tumor, including not only the enhancing part of the tumor where we know the blood-brain-barrier is dysfunctional, but even more importantly, the non-enhancing leading edge of the tumor where the blood brain barrier is more intact. For agents to be effective for our patients, adequate delivery into the non-enhancing part of the tumor is critical. Along these lines, we need a much greater emphasis on development of drugs that are chemically designed to successfully pass through the blood-brain barrier (BBB). Finally collaboration is key. The world is getting smaller thanks to amazing technology advances. We have an opportunity that is greater than ever to work more globally on the very challenging issues confronting our field. IBTA: Do you anticipate any significant breakthroughs in treatments for brain tumours in the next ten years? If so, what might they be? DR: Currently, I am very optimistic that immunotherapeutic approaches that are achieving dramatic results in other cancer indications will also demonstrate benefit for brain tumor patients. I feel that combination regimens utilizing complementary immunotherapeutics holds great potential promise. Beyond that, I am hopeful that better understanding of unique metabolic capabilities of tumor cells will be able to be exploited therapeutically. IBTA: What inspires you in your work? DR: I am inspired on a daily basis by the courage, fortitude, hope and perseverance of our patients and their caregivers. I am also inspired by the hard work and creative efforts of my colleagues in neurooncology and oncology in general. IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? DR: I try to exercise regularly and I find a good work-out to be a great cathartic and opportunity to think through issues and challenges. My family is my biggest source of strength and balance. I am very blessed in that regard. 11
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IBTA: What plans and hopes do you have for your term as President of SNO? DR: I am extremely honored to serve as the tenth president of the Society for Neuro-Oncology (SNO). This is a very exciting time for our field and SNO has a tremendous opportunity as well as responsibility to advance our field forward to new levels of collaborative interaction on a global scale. Two additional priorities that I feel are critical to the future of SNO are to bring young talented investigators and clinicians into SNO, and to make sure that we embrace newer technologies to maximally facilitate communication and collaboration amongst our membership.
IBTA: How do you relax? Do you have a hobby? DR: Downtime is critical to people in our field and, although I need to do better with this, maintaining a reasonable balance between our professional and personal lives is imperative for healthy productivity. My greatest pleasure is family time – it doesn’t have to be doing anything fancy. In fact simple things are often most enjoyable. I enjoy sports, and Boston is a great sports town. I had amazing literature professors when I was younger who instilled in me a passion for reading. Finally, I enjoy the arts, especially music, theater and cinema. n
Worcestershire (UK) Brain Tumour Support Group
Above: Despite the English reputation for rain, throughout the last six years on the day of the Worcestershire Brain Tumour Support Group’s annual trek for “Walk Around the World for Brain Tumours” there has been brilliant sunshine
ON Sunday 6th October 2013, 24 members of the Worcestershire Brain Tumour Support Group undertook a three-mile walk around Worcestershire Woods Country Park, to collect miles for the International Brain Tumour Alliance’s (IBTA) “Walk Around the World for Brain Tumours”. This has been an annual event since the group was started six years ago by Rosemary Wormington and her family and friends. John and Rosemary sadly lost their daughter Frances to a brain tumour at age ten in 2007. Rosemary says that starting the group was a way of ensuring
that something good came out of the awful tragedy of losing their daughter. The group meets every other month for coffee and a chat, with occasional speakers. In between they have social meetings at a weekend so that friends and family who are working can meet up too. The group has organised all sorts of socials and riverboat cruises, and has visited castles, had picnics etc. As you can imagine in England, a standing joke is the weather. It always rains, except on the day of the IBTA walks which for the last six years have all been completed in wonderful sunshine! n
Back on track… after having a brain tumour removed A
my Pejkovic, now twenty-one years old, is a university student, a top model who has worked for Vogue, and a high jumper who won a silver medal at the World Youth championships held in Italy in 2009. Amy, who comes from Sydney, Australia, is now focussed on selection for the XX Commonwealth Games in Glasgow in July 2014. After that she wants to represent Australia in the high jump at the 2016 Rio Olympics. Those who do not know her story would be amazed that in 2012, five days after her nineteenth birthday, she was admitted to hospital for the removal of a 5 cms pilocytic astrocytoma brain tumour. For several months she was misdiagnosed with a middle ear problem after experiencing vomiting and excruciating headaches and balance issues. Amy’s mother Leanne, knew something was wrong. After the second middle ear diagnosis Leanne knew what the problem was - but could not bring herself to accept it. After having experienced her uncle dying from a brain tumour, she knew the symptoms but first had to rule out migraine. It was clear what Amy was facing, and Leanne waited until after Amy's 19th birthday party to make the trip to hospital, prepared to demand the scans she required. Fortunately, the staff at the Sydney Adventist Hospital were quick to respond and the scans were done without any demands being required. The diagnosis was what Leanne feared the most. Amy was operated on and the tumour was removed. She now has four titanium screws in her head, which she says do not set off the airport security alarms. Nineteen metal staples - one for each year of her young life as it happened - and a shunt were removed after her operation. 12
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Above: A triumphant Amy at the World Youth Championships in 2009
Amy says that her health scare “… opened my eyes. I saw it all as a second chance and it’s from going through that experience, I’m a lot more relaxed. There’s not really much pressure (when I compete) these days because I’ve been through a lot worse.” There were challenges for Amy immediately after her operation. She wrote
in her blog that: “I could only mutter a few words, the sound of whispering was like a marching band parade in my head …” After her visitors left she began to think: “Was I going to be okay? Will all my limbs work properly? Will I ever jump again? Walk the catwalk? … or just even walk again? Wiggling my toes and fingers, and trying to tense my muscles to see if
Above: Twenty-one year old Amy Pejkovic high
Above: Amy is a professional model. This
Above: Amy’s nineteen staples, ironically one for
jumping – she won a silver medal for this
photo is reproduced with kind permission from
each year of her young life as it happened
event at the World Youth championships held in
Paspaley, a pearl jewellery company. See http://
Italy in 2009. (Photos supplied by Leanne Pejkovic)
www.paspaley.com/collection/lavalier There is also a short video of an interview with
they were all responding, I smiled a little, everything seemed to be okay.” In March 2014, after plenty of determined exercise and practice Amy has returned to where she left off in 2012 when a brain tumour rudely interrupted her promising career.
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Brain Tumour
Amy on the Paspaley website.
At a track meet in Canberra she equalled her previous personal best high jump of 1m 86cms, which also represented a “B qualifier” for the Commonwealth Games. Amy
subsequently repeated it in Sydney the next week and bettered it in Brisbane the following week with a personal best of 1.87m. Hopefully, Amy will be selected for the XX Commonwealth Games in Glasgow. She is truly an inspiration for all those who have been diagnosed with a brain tumour. n
An interview with Patrick Y. Wen, M.D. Professor of Neurology, Harvard Medical School, Editor-In-Chief, Neuro-Oncology, Director, Center For Neuro-Oncology, Dana-Farber Cancer Institute, Boston, USA
IBTA: Where did you spend your childhood? Patrick Wen (PW): I was born in Hong Kong and grew up there until I was 15 when I went to finish high school in England. I stayed on in London for medical school and internal medicine training before moving to Boston for neurology residency. IBTA: Did you come from a family environment that had a connection with medicine or research? PW: My father was a neurosurgeon so I was exposed to medicine from an early age. He was in private practice but spent most of his time establishing and running a 50 bed neurosurgical unit for patients who could not afford medical care in Hong Kong. That made a big impression on me growing up. IBTA: What attracted you to medicine and to the brain tumour area specifically? PW: I think I always wanted to be a doctor. Some of it was probably my father’s influence, but in school the subjects I loved were biology and chemistry so medicine seemed a natural thing to do. When I was an intern in London, my professor developed a glioblastoma and died fairly quickly. It showed me in a very personal way the horrible nature of this cancer. I had always wanted to work in an area where there was tremendous suffering. There are few things more devastating than having a brain tumour. When I started there were really very few treatments and I wanted to do whatever I could to help. IBTA: What, in your opinion, are some of the biggest challenges for clinicians working in the field of neuro-oncology? 14
Brain Tumour
molecular therapies for our patients. There is also significant progress in understanding tumour metabolism which will open up a whole new therapeutic approach. There are also real advances in immunotherapies for other cancers and many of these vaccines and drugs are now entering trials for brain tumors. I really think that in the next few years neuro-oncology will see the breakthroughs in treatment that other fields such as melanoma are seeing now.
Above: Dr Patrick Wen. The Summer Palace in Beijing is in the background
PW: I think getting adequate funding for research in neuro-oncology is still a major challenge, although it is improving. A second factor is that there is still very limited interest among pharmaceutical companies in developing drugs for brain tumours. Most of the drugs they develop are designed not to cross the blood-brainbarrier, limiting their use for brain tumours. A third hurdle is that most phase I trials in cancer still exclude brain tumour patients, unnecessarily delaying access to promising agents. I think we also have to do a better job in collaborating with each other. Pediatric neuro-oncology and the neuro-oncology community in Europe do this much better than we do in the United States and we have a lot to learn from them. IBTA: Do you anticipate any significant breakthroughs in brain tumour therapies in the next ten years? If so, in what area? PW: I think we are at a very exciting juncture. The progress in understanding the genomics of brain tumours will hopefully translate into better targeted
IBTA: What inspires you in your work? PW: I see a lot of patients each week and their courage and grace in the face of often terrible adversity is tremendously inspiring. They are the ones who drive me in much of what I do. IBTA: Earlier this year, you were named as the new Editor-in-Chief of Neuro Oncology. What plans do you have for the journal? PW: I hope to build on the strong foundation provided by Dr. Alfred Yung, the previous Editor-In-Chief, and have the journal serve the international neurooncology community as a forum for rapid publication of the most important papers in all areas of neuro-oncology. We have already introduced some changes such as regular editorials, reviews, and highlights from the literature, as well as occasional discussions of areas of controversy such as the use of the antiviral drug valganciclovir for treatment of glioblastomas. As our therapies improve and patients live longer, the long-term neurologic complications of therapies will become more important and this is an area we will focus on more. We are also hoping to have great articles on all aspects of neurooncology and attract neurosurgeons, radiation oncologists, neuroradiologists
and other subspecialties that have traditionally published less often in Neuro-Oncology. IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? PW: Our jobs can be sad at times. We get close to our patients and it is painful when they don’t do well. The academic and research side of my work provides a valuable balance. I also work with a great group of physicians and nurses and we help each other. IBTA: How do you relax? Do you have a hobby? PW: I don’t live the most balanced of lives but I try to exercise most days. I get to catch up on my reading on the elliptical trainer each morning. I enjoy traveling tremendously but my real love is golf. It was something I grew up doing with my family. I was decent enough to play in the junior world championships and hopefully one day I will have time to play more often. n
If you would like to donate to the IBTA… We don’t wish to receive any funds from organisations who support the “Walk Around the World for Brain Tumours” and the “International Brain Tumour Awareness Week” because it is crucial that these are directed to local, national and regional brain tumour support or research organisations in your own country. However, as a completely voluntary organisation with no paid staff we do need some funding for our work and our publications. So we welcome offers of funding from companies and philanthropic organisations and have a detailed sponsorship policy on our website that covers that subject. Enquiries should be directed to: kathy@theibta.org If they wish to, individuals can also make donations directly to us via the on-line facility on our website www.theibta.org but please do not neglect your local or national brain tumour support groups.
Providing Support and Raising Awareness of Brain Tumours in Ireland www.braintumourireland.com Email: info@braintumourireland.com
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Why not me? By Lynda Tse Wellington, New Zealand
WHY am I still alive when others are not? In March 2006 my world was turned upside down when I was diagnosed with a glioblastoma multiforme (GBM), a type of malignant brain tumour. As a wife and mother of two young children, then aged 10 and 13, I was shocked and devastated. The statistics told me I had little more than a year to live. My oncologist told me, hand on heart, that he could not cure me. Yet here I am, eight years later, still alive and living a full life. I love spending time with my family and friends, and immersing myself in my crafts and hobbies. I am back working as a kindergarten teacher, and my husband and I are making plans for the future. I feel very lucky to be sitting here writing this. However my feelings of good fortune are sometimes tempered with what I call “survivor guilt”. Since my diagnosis I have met some wonderful people who have sadly succumbed to this disease. Why have I survived when they have not? I have looked into the eyes of parents who have lost their children to brain tumours and grieved for them. It is not the way it should be. Michael, my husband’s first cousin was diagnosed with a GBM a few months prior to me. By the time I was diagnosed, Michael was already well into his treatment. He became my “go to” person. He introduced me to a brain tumour support group. This support group was held at the Wellington branch of the Cancer Society once a fortnight. This was very helpful for my husband and me as we began to navigate our way through this new and scary world of brain tumours. Michael and I would chat on the phone, compare visits to our oncologist and meet for coffee. We were a team. I referred to us as the “Brain Tumour Warriors.” When Michael’s tumour recurred I was devastated. 16
Brain Tumour
Above: Lynda Tse (2nd from left), an eight year survivor of a glioblastoma, is pictured with her family in New Zealand (from left to right): son Nathan, husband and IBTA advisor Chris Tse, and daughter Cassandra
I visited him at home where he was under palliative care. On one occasion I baked the family a plate of chocolate chip cookies. The next time I visited, Anne, his mum, told me that Michael said he had dreamed of the chocolate chip cookies, which made me feel that I had helped in some small way. After Michael passed away, I found it hard to look into the eyes of Anne, a grieving mother, and not imagine that she would be thinking: “How come Lynda lives and Michael doesn’t?” Even to this day I still find meeting Michael’s family difficult. Through the Cancer Society I have become a mentor for newly diagnosed brain tumour patients seeking support as they embark on their treatment. Sometimes we meet for lunch or coffee, otherwise we keep in contact by phone or email. I share my experience with them and hope that my positive, never-give-up attitude buoys them into feeling that they too will be a long term survivor. Despite this positive thinking and fighting attitude, all too often the person’s health
takes a turn for the worse. I then feel as though my good health is like rubbing salt into their wound. I feel their disappointment, their sorrow - like a boulder in the chest - and I am powerless to help change their situation. Sometimes I feel unworthy of having this second chance at life. I didn’t suddenly become a different person. I didn’t suddenly become a saint, give up eating chocolate or become a person who never gets frustrated or annoyed. I still get frustrated in bad traffic. I still get bothered by rude people. I thought by facing my own mortality I would become a better, more tolerant person able to transcend the trivial and petty annoyances of everyday life. I have met others with this disease who seem to have accomplished this. I am inspired by them. In November 2013, I attended the inaugural World Summit of Brain Tumour Patient Advocates in Lafayette, California. I had initially not wanted to attend the conference, fearing my presence could make others feel uncomfortable. However the hope of meeting
other survivors, and the opportunity to learn about new treatments from elsewhere in the world, convinced me to go. During the conference I met many people who had lost someone close to them from a brain tumour. I found it deeply moving when they shared their stories or talked of their loved ones. I remember thinking to myself: “I hope they don’t mind me being here”, so I kept a low profile until we all had to introduce ourselves. When I was introduced as an almost eight year survivor of GBM, the room erupted into applause and there was nowhere to hide. I felt embarrassed but at the same time overwhelmed with the support and encouragement of everyone in the room. At that moment, there was no place for feelings of survivor guilt, just a sense of sharing a difficult journey with friends who understood. I try not to spend too much time in the land of brain tumours. I am grateful to be alive and I want to make the most of every day. I have come to realise that my feelings of survivor guilt are natural and I am determined not to let them affect my compassion towards others who are on this journey too. n
ABTA’s Breakthrough for Brain Tumors 5K Run & Walk
In 2013, the American Brain Tumor Association’s Breakthrough for Brain Tumors 5K Run & Walk brought together over 6,200 brain tumor patients, caregivers, health care professionals, friends and family in seven cities across
We take cancer personally
the United States. Funds raised support the ABTA’s brain tumor research funding program, as well as support and education programs for all tumor types and all age groups. Visit www.bt5k.org to learn more. n
Patients are at the heart of everything we do at Roche. They motivate and inspire us to search for and develop innovative medicines and therapeutic solutions with the goal of transforming the lives of people with cancer around the globe. We’ve come a long way, but there’s still a long way to go.
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The IBTA Year AT the International Brain Tumour Alliance (IBTA) we take pride in providing to the worldwide brain tumour community a globally focused, independent, knowledgeable and balanced viewpoint on a wide range of issues of importance to the patients, caregivers and wider brain tumour community we serve. Our goal is to see greater collaboration leading to greater knowledge and greater hope. To that end, we raise awareness of the challenges of brain tumours at every opportunity. From year-to-year, and particularly in 2013, our busiest year yet at the IBTA, we continue to be involved in the following: n encouraging the establishment of brain tumour patient organisations in countries where they do not yet exist; n government lobbying; n reviewing documentation for clinical trials (informed consent and patient information leaflets, for example) to ensure that these are written in clear, lay language so patients and caregivers can easily understand them; n providing the brain tumour patient “voice” in international research projects; n producing articles on the brain tumour patient perspective for a range of publications including a regular column for the online European Association of NeuroOncology (EANO) magazine; n advice and input to regulators; n connecting people and organisations through our extensive network and links; n acting as consultants on numerous patient advisory boards to academia, the pharmaceutical industry and independent projects; n serving on the governance boards of professional societies and international awareness raising and educational initiatives; n consulting on conference development and planning n writing submissions to inquiries Here’s a more detailed look at some of our additional major activities in 2013. 18
Brain Tumour
First World Summit of Brain Tumour Patient Advocates After eight years of solid activity on behalf of the people we represent in the international brain tumour community, the IBTA in November 2013 successfully organised the First World Summit of Brain Tumour Patient Advocates, near San Francisco, California. The Summit brought together over 60 leading brain tumour patient advocates from 20 countries for a busy two-day programme of plenary and breakout sessions where they exchanged information and discovered new ways of working better in their own country. The feedback from the Summit participants was overwhelmingly positive. We are currently preparing the Summit Report. A short summary appears on pages 8 and 9 in this edition of Brain Tumour magazine.
A small selection of photographs from the IBTA’s 2013 activities.
Above: SNO 2013. IBTA Chair Denis Strangman (left) and IBTA Co-director Kathy Oliver (third from left) with colleagues
Printing and distributing 12,000 copies of Brain Tumour magazine In 2013 we printed 12,000 copies of a 112page edition of Brain Tumour magazine (for the fourth year running) and freely distributed it to contacts in 109 countries. Our magazine was also provided free to thousands of delegates at major national and international brain tumour and cancer conferences in numerous countries. Based on feedback from our 2013 survey, Brain Tumour magazine is highly valued by all stakeholder groups. Readership of the magazine is extremely diverse, comprising brain tumour patients, caregivers, medical and allied healthcare professionals, representatives of the pharmaceutical industry, regulators, key opinion leaders, politicians, members of professional societies, constituents in other disease specific patient organisations, etc.
Above: IBTA booth, the European Cancer Congress (ECC) in Amsterdam in September 2013. Left to right: IBTA Advisor Jenny Baker, IBTA Co-Director Kathy Oliver and IBTA Chair Denis Strangman
Above: IBTA Chair Denis Strangman (second row, far left), Dr Michael Prados (back row, second from right) and Dr Becky DeBoer (back
IBTA E-News – the monthly online news of the international brain tumour community
row, third from right) meet staff at the Tata
We produced twelve monthly electronic editions of the IBTA E-News sent freely to over 6,000 contacts reporting on 176
(ASNO) conference in Mumbai in March 2013
Memorial Hospital in Mumbai, India, before attending the Asian Society of Neuro Oncology
Above: SNO 2013 in San Francisco, California. Above: ECC Amsterdam, September/October
(Left to right) IBTA Chair Denis Strangman, Mrs
2013. The IBTA participated in a dramatic
Lynda Tse, Chris Tse (IBTA advisor), Dr Susan
but dignified protest at the ECC and signed
Chang, IBTA Co-Director Kathy Oliver.
a petition objecting to anachronistic Dutch the exhibition hall because they were not “prescribers”. Photo courtesy of Jan Geissler, ECCO Patient Advisory Committee.
Above: Campaigning in the European Parliament for a better deal for patients with rare cancers. Left to right: Chordoma Foundation President Josh Sommer (USA), IBTA Co-Director Kathy Oliver and Chordoma Above: IBTA Chair Denis Strangman (left) and
Foundation European Liaison Hans Keulen
Dr Roger Stupp (Switzerland) at the ASNO
(Netherlands)
2013 conference held in Mumbai. Roger is wearing a special presentation scarf given to him at the conference.
Above: Kathy Oliver and IBTA advisor Jenny Baker at the EORTC/EANO/ESMO Trends Above: Participants from 20 countries at the
in Central Nervous System Malignancies
IBTA’s First World Summit of Brain Tumour
conference in Prague, March 2013
Patient Advocates, Lafayette, California, November 2013. See article on pages 8 and 9. Photo © Paolo Salcido (www.salcidoarts.com) reprinted with permission
Above: To mark European Month of the Brain in May 2013 the IBTA participated in an Above: Fredrik Lonnqvist, Chief Medical Officer
Information Day at the European Parliament in
at to-BBB with IBTA Chair Denis Strangman at
Brussels, Belgium organised by the European
the company’s offices in Leiden, Netherlands.
Federation of Neurological Alliances (EFNA)
Brain Tumour
International Brain Tumour Awareness Week and the Walk Around the World for Brain Tumours We attracted (non-financial) support from 196 brain tumour and cancer-related organisations for our two awareness-raising projects: the International Brain Tumour Awareness Week and the Walk Around the World for Brain Tumours now in their eighth year.
regulations which banned them from accessing
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items of interest to our international brain tumour community and beyond, encompassing the same breadth of readers as for the IBTA magazine. Again, based on feedback from readers, the IBTA e-newsletter is greatly appreciated and subscribers feel it has real impact and value for them.
Serving the brain tumour community at congresses, conferences, meetings and high level initiatives The IBTA either exhibited at, attended as a delegate, and/or provided a Directorlevel plenary or session speaker at over 25 cutting-edge brain tumour and cancer scientific conferences and meetings - for example, American Society of Clinical Oncology (ASCO), British Neuro Oncology Society (BNOS), European Association of Neuro Oncology (EANO), Asian Society of Neuro Oncology (ASNO), Britain Against Cancer (BAC) British Neuroscience Association (BNA) Festival of Neuroscience, International Kidney Cancer Coalition (IKCC), Society for Neuro Oncology/World Federation of Neuro Oncology (SNO/WFNO), Biotherapy Development Association (BDA), European Organisation for Research and Treatment of Cancer (EORTC), European Cancer Congress (ECC), etc in various locations in North America, Europe, Australia and Asia. The IBTA also participated in a wide range of pan-European high level initiatives regarding cancer patient advocacy issues and rare cancer issues. This level of activity provided networking and communication opportunities with thousands of stakeholders in the world cancer arena and significantly increased awareness of the challenges of brain tumours from the patient and caregiver perspective. The International Brain Tumour Alliance is the only patient and caregiver organisation undertaking this wide and far reaching work in the global brain tumour community. n
EORTC developing SPECTAbrain for patients with neurological cancers By John Bean Communications Office, European Organisation for Research and Treatment of Cancer (EORTC)
Above: The SPECTA collaborative platform. Brain tumor patients are stratified according the molecular profile of their tumor, with the aim of facilitating access to appropriately targeted clinical trials.
SPECTAbrain will be the latest program to join EORTC’s SPECTA (Screening Patients for Efficient Clinical Trial Access). SPECTAbrain will prospectively collect biological materials from patients who have been diagnosed with neurological cancers, and simplify their access to clinical trials that are appropriate for them. SPECTAbrain joins similar EORTC programs for patients with colorectal cancer (SPECTAcolor) lung cancer (SPECTAlung) melanoma (SPECTAmel) and prostate cancer (SPECTAprostate). The EORTC SPECTA programs are first in class innovative partnership models which mutualize efforts across stakeholders to facilitate clinical trial access based on systematic, coordinated and quality controlled tumor tissue collection and analysis platforms dedicated to patients with cancer. Cancer clinical researchers are partnering with pharmaceutical companies and regulators to further develop this approach All of the EORTC screening programs take advantage of the rapid advances that have recently been made in understanding cancer at the molecular level as well as the 20
Brain Tumour
impressive technological progress that has allowed scientists to identify changes in a patient’s DNA that lead to the development of cancer. Today, cancers are characterized not only by their location in the body, e.g. the brain, lung, breast or prostate, but by their genetic signature. Indeed, the genetic signature of brain tumors can vary widely, and not just between patients, but also between different tumor sites within a patient, within a single tumor, and even within a single tumor over time. By genetically classifying tumors, it might be possible to define specific treatments for each type of cancer mutation. EORTC’s SPECTA breaks from the traditional model of cancer clinical research and prospectively identifies subsets of patients with a specific molecular profile. This is in sharp contrast to current clinical trial practice, where patients are first enrolled in a trial, and only thereafter are subgroups of responding patients identified. SPECTA identifies subgroups of patients who would be more likely to respond to a particular treatment because of
their particular molecular profile. Drugs that target this specific molecular profile can then be tested specifically in these patients. It is anticipated that patients selected for clinical trials in this fashion would have a higher probability of a response to the targeted treatment. This approach is well suited for brain tumors, because primary brain tumors vary considerably with respect to incidence across age groups, tissue characteristics, genetic profiles, response to treatment, and patient outcome. Gliomas, for example, are the most common primary malignant brain tumors, and they are subclassified according to the characteristics of their tissue. More and more, however, molecular markers are being used to classify these tumors further. There are already a number of markers that are routinely available in Europe in subsets of glioma patients, such as O6-methylguanine DNA methyltransferase (MGMT) promoter methylation in patients with glioblastoma and 1p/19q codeletions in patients
with anaplastic oligodendroglial tumors. There is an absolute need to test for these markers, because the tests lead to appropriate treatment decisions, and SPECTAbrain also aims to identify and validate additional appropriate markers. Once a patient has consented to participate in SPECTAbrain, their tumor material is collected for molecular testing. The results of this testing allow the patient profile to be matched with different trials investigating molecularly targeted drugs. In cases where the patient profile matches the requirements of a trial, the treating physician will be informed of this opportunity, and they can then propose the trial to the patient. To ensure that this can happen, the general status and the line of treatment of each entered patient is monitored on a semiannual basis. Furthermore, the treating physician receives the complete molecular profile of the patient in case this could help with treatment choices.
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A patient can be enrolled in SPECTAbrain from one hospital and be treated according to best practice in that same hospital. When a clinical trial becomes available for that patient, they can then enter that trial through a participating institution. This has the added benefit of improving the accrual efficiency for these downstream trials and also to provide smaller health care institutions and their patients with easier access to clinical research. n
For more information about SPECTAbrain, please use the contact form here: www.eortc.org/contact
From the February 2013 IBTA E-News Highly eloquent gliomas: Neurosurgeons at the Department of Neurosurgery, Klinikum rechts der Isar, Technische Universit채t, M체nchen, Germany, have reported on the successful resection of 47 supratentorial gliomas which were primarily evaluated to be non-resectable at another neurosurgical department. Techniques used included pre and intraoperative brain mapping and monitoring (IOM) by motor evoked potentials (MEPs). Median survival was 14.8 months. Four patients had a new motor or language deficit which remained permanent. n
Navigating your way through brain tumor online support groups By Al Musella, DPM Founder and President, Musella Foundation for Brain Tumor Research and Information Inc, USA
AL Musella, DPM is a podiatrist in private practice in Hewlett, New York, USA. His interest in brain tumors started when his sister-inlaw, Lana, was diagnosed with a GBM in 1992. Ironically, Al's father was also diagnosed with a GBM in 1999, a year after Al formed the Musella Foundation. Al’s brother-in-law was diagnosed with a spinal ependymoma in 1991. Another brother-in-law has a pituitary adenoma diagnosed in 2001. Al’s website, VirtualTrials.com, is an invaluable resource, used by thousands of brain tumour patients and their families all over the world. A range of online support groups can be found on the VirtualTrials.com website. Here, Al talks about the various online opportunities for patients and families to find support and participate in discussion groups online.
Online support group formats Online support groups are an important resource for any family dealing with a brain tumor. I advise that at least one person in the family joins a group. It can be the patient or a caregiver. Joining a group like this provides a way to talk to other people going through the same challenges. Hopefully you do not know many other people with a brain tumor. Online support groups also provide perspective in order to make better decisions when researching options. For example, when a patient hears about a long term survivor, the natural instinct is to emulate the treatments given to that long term survivor. Without a support group, there is no perspective on how many people have tried that course of treatment and how well or poorly they all did. If you come across a patient who did really well, but if there were 1,000 other patients who tried the treatments which that patient tried and only one did well, that is a worse outcome than the standard treatment where you would expect at least 50 of the 1,000 patients to do well. You don’t get to talk to those 999 people who didn’t do well with the treatment unless you are involved in a group and observe what happens and look through the archives. Another way to track outcomes is our Brain Tumor Virtual Trial registry which can be accessed here: www.virtualtrials.com/brain 22 22
Tumour Brain Brain Tumour
standard. For example, members of our group started using Temodar (Temodal/ temozolomide) during radiation more than a year before the study came out proving that is the best way to use Temodar. We in the brain tumour community are a small patient population compared to the more common cancers. We need to stick together and be much more vocal on issues that affect us. A support group keeps you in the loop. There are many options available to connect with other people interested in discussing brain tumors.
Online forums Above: Al Musella presenting on “Accessing Innovative Brain Tumour Therapies” at the IBTA World Summit in California (November 2013). Photo © Paolo Salcido (www.salcidoarts.com) reprinted with permission
Brain tumour patients and caregivers spend a very large amount of time researching treatments. Why start from scratch when thousands of other families are doing the same thing and others have done the same research before you and come up with helpful information already?
Input from around the world With a support group, you get input from around the world and usually find out about treatments long before they become
This is a web application where users have to go to a website to read and post messages. There are usually many topics, such as separate topics for each type of tumor covered, clinical trials, approved treatments, support issues, financial challenges, etc. Within each topic there are “threads” of discussion with more specific titles. A member can subscribe to a thread and be notified when a message is posted, or they can just browse all of the threads and topics. Most have a feature that lists new posts since the last visit. The advantage of such a system is that a large number of messages can be handled and are organized by threads which are easily searchable. For example, if you are
Email discussion groups – also known as “listserves”
Above: Al Musella (center) talks with IBTA Chair Denis Strangman (left) and IBTA advisor Chris Tse (right) at the IBTA’s First World Summit of Brain Tumour Patient Advocates held near San Francisco, California in November 2013. Photo © Paolo Salcido (www.salcidoarts.com) reprinted with permission
This works by email. You join a group, and then every message sent to the group is forwarded to you quickly. Or you can elect to get a digest of messages just once or twice a day. You reply to the group and the email goes out to everyone else. There is usually an archive of messages that can also be searched. Groups can be set up as private for members only, or public where anyone can read them. The advantage of this type of system is that every member gets every message. This type of system usually works best with a smaller volume of messages than an online forum, and can survive even if there are only a few messages per week. When the volume of email grows too large, it becomes overwhelming and a lot of people quit the group. When this happens, I usually split the group into more specific topics so people can stay focused on the topics that interest them. The best thing about these groups is that you can usually find one that is very specific to your needs, such as our BrainNovocure Support Group where members can help each other with tips on how to deal with this unique treatment - such as how to travel with your Novocure system, how to cope with scalp irritations, and even how to carry the device around better. We also have email discussion groups for rare tumors such as the Choroid Plexus Group, the Spinal GBM Group, Brainstem Glioma Group and so on. For a list of some of these groups, go to: http://virtualtrials.com/lists.cfm
Chatrooms
Above: The Clinical Trials & Noteworthy Treatments For Brain Tumors home page
interested in a clinical trial, you search for the treatment name and get all messages that ever mentioned that treatment. The disadvantage of an online forum is that it takes more time to actually go to the website and participate actively. This format is also much better when a large number of people participate and post a lot of messages. If there 23
Brain Tumour
isn’t much traffic, people stop visiting often which further slows down the group. Another disadvantage is that not every participant reads every message. This format was very popular and we ran one from 1992 to 2002. But then we closed our brain tumor forums because our email discussion groups became more popular than the forums.
This is where members can talk in real time by typing (or audio or video) to the other members. The advantage is that of immediacy. You ask a question and get an immediate response. Usually no archives are made available to members (although the moderator has to read through them daily). The main disadvantage of chat rooms is that not everyone can participate all of the time, so sometimes there is nobody else in the room to chat with. We removed our chat room because we found that sometimes bad advice is given out either intentionally or unintentionally. Brain Tumour
23
when something sounds too good to be true and can fall for scams in chat rooms. So if you set up a chatroom make sure there is a moderator 100% of the time. A great use of chatrooms is to hold live, real time online events and allow members to ask the experts questions.
Social Medial groups
Above: This is a screen grab from VirtualTrials.com showing a sample listing of clinical trials for brain tumors, ordered by how many institutions participate
Facebook is the most popular social media group format. Facebook is much more open. All of your friends and family can usually see what you are posting. This is fantastic when the discussion is on advocacy, awareness and fundraising, as there is a huge reach of people including those who aren’t in the fight of their lives and have time and resources to help with these things. The negative is that the openness inhibits discussions of more private topics such as treatment options or the choice not to continue, death, disabilities, sexual problems, side effects, etc. Another downside is the vast number of brain tumor groups on Facebook. There are at least 100 groups and most don’t get that critical mass of participants needed to make the group work. Most brain tumor doctors shy away from public forums and won’t respond to questions on Facebook.
What’s the bottom line? All of these various types of online discussion opportunities have a place in the brain tumor community. My current favorite format for the exchange of brain tumor information and support is an email discussion group. My favorite group is the “Braintumor treatments” group. My favorite for fundraising, awareness and advocacy is Facebook. n
From the April 2013 IBTA E-News
Above: An online map of participants in the brain tumor virtual trial
With the other types of groups, there are a lot of people reading each message and they act as a reality check. If they think something may be wrong, they jump 24
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in and point out that they disagree and the reason why. A newly diagnosed patient usually doesn’t have the background to understand
Anti-nausea drug: Researchers at the University of Adelaide (Australia) have found in laboratory studies that the anti-nausea drug Emend acts to stop "Substance P" and resulted in a marked reduction in brain tumour growth.
Our Dad By Ga Vin and Ga Rick Lee (Sam Lee’s sons) Perth, Australia
OUR Dad, Sam Lee, lived a very active lifestyle and everyone thought he was really quite fit and healthy for his age. His life, however, changed completely when he was diagnosed with a brain tumour located near his thalamus in September 2011. He was diagnosed with glioblastoma multiforme, which is the most aggressive and malignant of brain tumours. He had an initial neurosurgery in Perth, Western Australia. He was unable to walk or talk for about two months and we cared for him at home. We spent countless hours trawling through the research on brain tumours. Dad wanted to live, so we decided on the cocktail treatment approach, targeting the tumour with everything we had. This included a ketogenic diet, various 25
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supplements, off-label medicines, and exercise. Fortunately for us, we also live in a country with great back-up healthcare options, and we will always be thankful to the help provided by carers from Neurodegenerative Conditions Coordinated Care Program (NCCCP) and medical visits from Silver Chain Hospice. We found out about Dr Charlie Teo, a neurosurgeon in Sydney, 3,300 kms away on the other side of the country, who was prepared to operate a second time to remove the tumour. So, we worked very hard with dad to allow him to be mobile enough to fly to Sydney for the surgery. The surgery was carried out in December 2011 and that was one of the turning points for Dad. Dad came out of it with the tumour removed and functioning
u o y h s i W here! e r e w better than before. It was like a miracle. We will always be grateful to that surgeon for giving our dad his life again. Following the surgery, Dad underwent chemotherapy and radiotherapy back in Perth in early 2012, which seemed to be fairly effective. Dad has many good friends with whom he continues to have get-togethers for meals and karaoke. Dad also likes to travel and he does that with Mum and sometimes with us as well. He’s not nearly as strong as before and his movement is slower, but he is a very determined person and still manages to make the most of his second chance in life. The photos here are a montage of some of the places he has visited in his travels in recent years. Three cheers for Dad!! n
From the heat of India to the cold of Canada An interview with Dr Rahul Krishnatry a SNO International Fellow
IBTA: What is the scholarship you hold? Rahul Krishnatry (RK): My Fellowship is funded by the Society for Neuro-Oncology (SNO), under the International Outreach Research Fellowship program. This was developed to help clinicians and researchers from low income countries to visit and obtain training for one year at centers of excellence in the field of neuro oncology in North America and then return to their home countries to expand existing neuro oncology programs. IBTA: Where are you located and what has been your work and study experience? Have you enjoyed being in Toronto? How do you cope with the different weather? RK: I have been at SickKids Hospital in Toronto under the mentorship of Dr Eric Bouffet and Dr Uri Tabori since last July. It is a great place with one of the largest comprehensive pediatric neuro oncology programs in North America. It is special in many ways. It has great infrastructure, with collaborations in Toronto, various centers in Ontario, the national grid with all of Canada, and twinning programs overseas in Jordan, and so on. It has a great in-house program with both clinicians and clinical scientists onboard. Moreover, as a foreign trained medical professional, I am allowed to do clinical practice and gain hands-on experience. So, overall it is the best place I could have imagined, for my super-specialty training in pediatric neuro oncology. Toronto is a great multicultural place and embraces everyone with so much love and affection, that you get an instant feeling of being at home. The weather is amazing with so many colors all round the 26
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and also, of the long term effects of radiation. Understanding and practicing such a rapidly-changing super specialty needs hands-on training under the experts themselves. This motivated me to come to SickKids, and to be trained in pediatric neuro oncology as a clinical scientist.
Above: Dr Krishnatry with a plaque presented to him at the 2013 Society for Neuro-Oncology (SNO) meeting in San Francisco
year. Winters are a little severe compared to what we face in India, but overall I love it very much. My wife is now with me and we had a baby last December. We are all having a great time here. IBTA: How did you come to be involved in the neuro oncology area? RK: In India, unlike North America, the radiation oncologist is trained as a comprehensive oncologist responsible for overall care of cancer patients. There is a huge lacuna for focused neuro oncologists, and moreover, for dedicated pediatric neuro oncologists. Clinical research is another under-addressed issue. As you are aware, pediatric neuro oncology is a dynamic field. There are newer insights into the biology of these tumors almost every day, which herald changes in treatment patterns. Now, there is ample evidence proving the efficacy of chemotherapy in pediatric brain tumors
IBTA: What are your plans to implement what you have learned when you return to India? RK: There will be plenty of work to do once I return. We will have to plan and work in tandem with the Indian Society of Neuro Oncology (ISNO) and the Brain Tumor Foundation (BTF) India. Collaboration with international organisations like SNO and the IBTA will also be crucial. First of all, I will work towards establishing a group dedicated to pediatric neuro oncology in my hospital. I also intend to establish a basic research laboratory with tumor bank facilities, where translational research can be done. The next step will be to reach out to various neuro oncology centers in India and strengthen the programs and practice patterns there. Eventually, we will target developing a nationwide collaborative grid, as I have witnessed here, between SickKids and other centers of excellence across North America and Europe. Dissemination of knowledge is very important, and developing a teaching program would be high on my priority list. IBTA: What is your recommendation about the best way to transfer clinical knowledge to young doctors such as yourself who are from the developing countries? RK: Apart from fellowships, student
Above: Dr Rahul Krishnatry, with his wife, Himika, who is also a doctor, and their new baby, Trisha. Is Trisha destined to be a doctor too?
exchange programs play an important role in bilateral exchange of ideas. Such initiatives facilitate the unification of various cancer care programs and practices across the globe.
This not only helps people like me, who are visiting larger centers, to mature as better clinical scientists, but they also create a bonding, and trust and collaborations in the future, for the host centers. This will help to develop standardized practice globally. We can hope in turn to develop a robust and reliable model of evidence-based medicine internationally. Occasionally, issues of funding prove to be a limiting factor. Currently, most of such funding is directly or indirectly dependent on industry, which is fluctuating as a source and is concerning in present times. Hopefully, the situation will improve over time. Foreign medical graduates are not permitted to do clinical work in the USA. It would be a demanding, yet immensely beneficial task, to relax the rules a bit, permitting foreign-trained clinicians to come for limited periods of time to the American centers and gain handson clinical experience, as is permitted in Canada. n
When you are diagnosed with a brain tumour, you need someone who understands. We know. Get in touch today, for 24/7 help on +44 (0)1983 292 405, email hello@brainstrust.org.uk or visit www.brainstrust.org.uk
From the July 2013 IBTA E-News Hormone replacement therapy (HRT) and meningiomas: A Danish study of 924 women who had a meningioma has led to a claim that women on HRT have a 30 percent greater risk of getting a meningioma brain tumour but the findings have been dismissed by experts in women’s health. One consultant endocrinologist said that the risk might only represent one per 100,000 women per year and was “an absolutely trivial risk and of no clinical or biological importance”. Another expert said that with women who experience early menopause the benefits of HRT are likely to substantially outweigh the long-term risks without HRT, which included osteoporosis and cardiovascular diseases. n
PHILIPPINE
BRAIN TUMOR ALLIANCE HIGHLIGHTS 2013
The fight is so much more than the diagnosis. We know.
• Counselling with fellow neuro patients and family members. • Referral of patients to neuro medical specialist (neuro-oncologists, neurologists, neurosurgeons). • Educating fellow survivors and their families in nutrition and diet during chemotherapy, radiation and surgery. • Encouraged better availability of clinical trials for brain tumor patients in The Philippines. • Raising awareness of the challenges of brain tumours through public gatherings, through our provincial trip. • PBTA were able to bring brain tumours patients from Papua New Guinea and Ghana Africa.
Board of Medical Advisers: Dr. Gerardo D. Legaspi, NeuroSurgeon (SLMC, TMC, UP-PGH) Dr. Gerardo H. Cornelio, Oncologist(SLMC, SJDD, UP-PGH) Dr. Santosh Kesari, NeuroOncologist/Neurologist, Moores Cancer Center (MCC), UCSD Mr. Marlon Saria, AOCNS Onco Nurse Specialist, MCC, UCSD Dr. Luis Martin Habana, Cardiologist (TMC, CGN, UP-PGH) William C. Abbott / Susan T. Abbott, Founding Director/ Co-Director EMAIL ADDRESS: wcabbott@gmail.com hca7sta@yahoo.com
WE ARE ON FACEBOOK: Philippine Brain Tumor Alliance and “LIKE” us! 27
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“Having the opportunity to remove a tumour and give a patient a new chance at life is nothing less than exhilarating.” An interview with Keith L. Black, MD Chairman and Professor, Cedars-Sinai Department of Neurosurgery; Ruth and Lawrence Harvey Chair in Neuroscience; Director, Cedars-Sinai Maxine Dunitz Neurosurgical Institute; Director, Johnnie L. Cochran, Jr. Brain Tumor Center
O
ther young kids might have been interested in how far frogs could jump. Keith Black wanted to know what made them tick. “I was intrigued by nature, like the habits, life cycle and anatomy of tadpoles and frogs. At a very early age, I learned how to anesthetize and dissect them to examine their organs,” says Dr. Black, Chairman and Professor of the CedarsSinai Department of Neurosurgery, and the Ruth and Lawrence Harvey Chair in Neuroscience. Born in Tuskegee, Alabama, Dr. Black lived his early years in the Tuskegee-Auburn area, a mostly rural locale where frogs and other creatures often found themselves under the intense gaze of the future neurosurgeon and research scientist. His father, principal of an elementary school, and mother, a first- grade teacher, always encouraged and supported his exploration and learning.
Drawn to medicine “I was drawn toward the study of medicine early, and experimented with injured birds to see if I could mend their wounds and keep them alive. My childhood interest gravitated toward the heart,” Dr. Black says. “When I was 10, I spent a summer in Pennsylvania, where my father was taking graduate course work at the University of Pennsylvania. I found the laboratories of the school of medicine and started peeking in to see what was going on. Instead of shooing me away, the researchers explained their work to me and infected me with their enthusiasm.” 28
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“This gave me a chance to learn suturing and other surgical skills. I eventually devised and conducted a research project that led to the unexpected discovery that heart-lung bypass machines used during heart surgery could damage red blood cells. I wrote a research paper about this finding and received a Westinghouse Science Award when I was 17,” Dr. Black says. Soon he was off to college at the University of Michigan School of Medicine, taking a program that enabled him to earn an undergraduate and a medical degree in six years. Above: Neurosurgeon Dr Keith L Black says that a
The brain – beautiful and mysterious
cure for brain tumours is his ultimate wish. But in
“When I took my first neuro-anatomy class, my interest in the heart paled, and I quickly knew that I would spend my professional life studying the brain. It is mysterious and beautiful, the center of the soul, the essence of who we are,” Dr. Black recalls. He performed his first brain tumour surgery while in his second year of residency. Due to the size and location of the tumour, the patient was paralyzed on his right side and unable to speak. “In surgery, not all tumours are easily distinguishable from normal brain tissue; this one was. Not all tumours can easily be ‘teased away’ and taken out; this one could,” Dr. Black says. “Less than 24 hours after the operation, the patient was able to move his previously motionless arm and leg, and he was asking out loud for breakfast. I couldn’t think of anything more rewarding than having such a profound
the meantime, he says: “I wish for each patient the strength and courage I have seen repeatedly demonstrated through the years, as patients and their loved ones fight this disease.”
The same thing happened again later, in the research labs at Case Western Reserve University after the family moved to the Cleveland, Ohio area. The scientists welcomed their uninvited guest, and in showing him the scientific process, they cultivated his growing scientific interest. He qualified for an apprenticeship program for minority students interested in medicine, and at the end of his freshman year in high school, he landed a summer job as an unpaid technician in the laboratory of a medical doctor and a research scientist who were conducting heart valve studies in dogs.
effect on a person’s life, and I couldn’t imagine doing anything else.”
– and director of the Johnnie L. Cochran, Jr. Brain Tumor Center – which translates basic research into clinical trials.
Challenges in treating brain tumours As rewarding as the profession can be, it is not without its challenges, he says. Two huge and interrelated obstacles have always perplexed neurosurgeons. “First, many aggressive, malignant brain tumours have ‘fingers’ that invade normal brain tissue. In the operating room, even with the latest imaging systems, it is impossible to precisely define the borders. We know that a tumour’s return and a patient’s length of survival can be greatly determined by what we call ‘imagecomplete resection,’ so the better we can distinguish tumour from normal tissue, the more effective we might be in saving lives. “But no matter how much of a tumour we remove, malignancies can return or migrate to other locations, in large part due to the existence of cancer stem cells. Like normal stem cells, these are cells that can self-generate and produce new cells, but instead of creating healthy cells, they produce cancer cells, and they are highly resistant to radiation therapy and chemotherapies.”
Possible solutions To address the indistinct boundary issue, Dr. Black says Cedars-Sinai researchers, like those at other major treatment and research centers, are studying a variety of ways to make tumour borders much more visible. “We have studies going on now to evaluate the use of ultraviolet light and a camera that was developed for space and terrain exploration. We’re investigating the use of ‘time-resolved fluorescence spectroscopy,’ which analyzes the ‘signatures’ of different tissues when laser light focused on them is re-emitted in colors determined by their molecular makeup. And we hope to start a clinical trial in the near future using a special camera, a near-infrared laser and a new imaging agent that makes tumour tissue ‘light up’ in contrast to normal tissue.” To deal with the inherent ability of many cancers to regenerate or spread regardless of treatment, researchers are looking for answers in unlikely places, says Dr. Black, director of the Maxine Dunitz Neurosurgical Institute – which conducts basic research 29
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Promising developments “I don’t believe the final frontier of brain tumour surgery will be in the operating room,” he says. “Our center and others are striving to attack and kill tumours through unconventional, less-invasive or even noninvasive approaches. We’re working to develop a new-generation nanoscale drug and ‘transport vehicle’ that, injected intravenously, will carry a variety of cancerattacking drugs directly into cancer cells to break them down from the inside – without disturbing normal cells. I believe highly targeted drugs like these will be able to destroy tumours without causing the unpleasant side effects of current medicines. “Our center also has developed and is refining a brain tumour vaccine that stimulates the immune system to attack tumour cells -and we now are focusing this strategy on those cancer stem cells from which tumours grow and regenerate,” he says, adding that he expects to see vast improvements in brain tumour treatment – with and without surgery - in the next 10 years. “Our understanding of cancer genetics has grown rapidly in the past few years, and these discoveries are leading to the
prospect of much more individualized treatments based on a particular patient’s cancer-generating genes,” says Dr. Black, who enjoys hiking, sailing and scuba diving when he has a chance to get away from the rigors of research and the stress of dealing with life’s tough realities.
Inspired by the bravery of patients and their families “As happy as I am to see the progress we’re making in terms of technology and new approaches to treatment, I am reminded every day that we have not yet cured cancer or found a way to prevent it,” he says. “That, of course, is my ultimate wish, but in the meantime, I wish for each patient the strength and courage I have seen repeatedly demonstrated through the years, as patients and their loved ones fight this disease. “I’m always inspired by the bravery and unity that emerge when patients and their families are forced to grapple with a grim diagnosis and a future filled with uncertainty,” he adds. “I have seen people live what seems like an entire lifetime in just a few months or years. I also remain inspired by our successes – having the opportunity to remove a tumour and give a patient a new chance at life is nothing less than exhilarating, and it motivates me to seek effective treatments or cures for all of our patients.” n
Brain tumour survivor Dr Anita Berghout and her husband Bob have organised a number of brain tumour awareness-raising activities in the Hunter region of New South Wales in Australia. In this photo Bob is wearing his Brain Tumour Alliance Australia hat. Anita undertakes pastoral care activities at the John Hunter Hospital. n
Don’t frown because it’s over… smile because it happened By Bunny Leach, Ponte Vedra Beach, Florida, USA
that she wasn’t alone in her suffering. One night while sitting in our living room together she turned to me and said: “Your dad died from cancer Mommy. Now I have cancer. You see how it is, you can do something to help.” I just looked at her, and dropped my head. I didn’t want to hear this. Caring for her was all that mattered.
“Rising from the ground, Like a big or’nge ball of fire, Sun lifting to sky.”
Above: Bunny Leach wrote movingly of her daughter’s brain tumour journey in the book
Honoring Nicki by helping others
Nicki Leach
Turtle Shells
After Nicki died I found myself alone. My son was in college. My husband had moved out and filed for divorce. We had been married twenty-four years. With Nicki no longer here it seemed I had no purpose, but I promised her that I would be all right. So I made a choice to rise up every morning just like the sun over my lake, and be happy. I began to take long walks on the beach to clear my mind, and to think. Solitude became my friend. Everyday I wrote my thoughts in journals. When I went to bed at night my mind worked overtime. As I thought about what Nicki said to me, I wondered what I could do to honor her, and to help others her age who were going through what she had. During the time that I cared for her, she cared for me. When she had cancer she wanted to blend in with her friends and continue with her life as normally as possible. Being isolated from her peers was hard for her and it hurt me to watch this. As she struggled to live a normal life this cancer changed her, making it impossible to keep up with her healthy peers. Her world wasn’t normal anymore.
MY cottage home in Ponte Vedra Beach, Florida has a sun porch on the back with large floor-to-ceiling windows, which overlook a small lake, and the Guana Preserve. The Atlantic Ocean is just a short walk away and provides a refreshing salt-water breeze. Every morning the sun comes up and paints a fiery yellow, orange sunrise across the sky. Wading birds, ducks and turtles live together in harmony outside my windows. Songbirds chirp from the tropical Florida trees to provide the perfect background chorus for this enchanted scene. So begins another day in paradise. My life is good. I’ve lived here for over twenty years, and I enjoy the beauty of nature, and find peace in my surroundings. This is where I write. This is where my daughter Nicki grew up and photographed her surroundings during her three-year battle with cancer.
The journey begins Experts tell us that losing a child to death is the most traumatic violation against the 30
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natural order of life. Children are supposed to bury their parents, not the reverse. Malignant brain tumors are nasty invasions. Doctors often attribute the early symptoms to other changes that happen in a maturing teenager. In Nicki’s situation the symptoms were thought to be growing pains. Or they were from hormones, migraines, or a virus. I was her mother, and I knew it was none of those; but I had no idea it was a malignant brain tumor, a glioblastoma. Diagnosed at 17 her pediatrician predicted that she would have one to three years to live. He was right. So during that time Nicki made a choice to never stop smiling. She persevered and graduated from high school even while she was sick. Then she went on to complete two semesters of college before she died at nineteen. From our many trips to the clinic to receive treatments, and weeks spent in hospitals, she was able to see other teenagers battling cancer. She found out
reason enough to write a book of hope for others. That’s when I wrote Turtle Shells: Heading Through Cancer, a straightforward chronicle through my daughter’s treatments and death, and my years following. Although I will always feel my daughter’s spirit around me I had to find my own strength to survive. So many people had helped me during Nicki’s illness, now I wanted to help others.
Living on in the lives of young adults
Above: Nicki Leach inspired the Nicki Leach Foundation, which offers scholarship money to young adults (age 18-30) with cancer so that they can continue their education
The Nicki Leach Foundation, inspired by a beautiful young woman Then one day while running a 5K race for breast cancer the answer came to me. I would start a foundation. I was as determined as she was so on January 1, 2006 I launched a website and went to work to create the Nicki Leach Foundation a 501(c)(3) non-profit corporation. The foundation has a clear mission: to offer scholarship money to young adults in the USA (age 18-30) with cancer so that they can continue their education. (The foundation hopes to eventually offer philanthropic services on an international basis, as permitted by growth of resources and future support.) In our experience to date, continuing or finishing education is one of the common 31
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goals of young people with cancer. Ironically, the process of dealing with cancer in this age group often exhausts funds that are available for their education making matters worse. We found that young adults in this in-between generation are highly under-insured as they are often caught between obtaining their college degree and finding employment. With the foundation up and running I felt a need to share my story of hope with others who have lost loved ones, or are battling cancer, or other illnesses. Writing my thoughts in journals helped me to heal. When my dad died from colon cancer at age 48, I wrote my feelings down. After journaling through Nicki’s cancer I had compiled enough material for a book. The fact that I didn’t think I would ever be happy again, and now I was, seemed
Shortly before Nicki died she paraphrased her favorite quote by Dr. Seuss, which she wrote in a letter to her best friend. She wrote, “Don’t frown because it’s over… smile because it happened.” I’m not frowning…I’m smiling, Nicki. I am smiling because my daughter lives on in the lives of the young adults who we help through her foundation. I smile because Nicki gave me hope, and a mission, and a purpose to help others through her memory. I smile because Nicki never stopped smiling. To date over 50 people, all with different cancers and stories which are on our website, have benefited from Nicki’s assignment to “do something to help.” In 2013, the Nicki Leach Foundation exhibited at the American Society of Clinical Oncology (ASCO) annual meeting in Chicago, USA. ASCO is described as: “the foremost educational and scientific event in the oncology community, attendees come from around the world, representing every oncology subspecialty and discipline across all levels.” When I entered the patient advocacy pavilion hall of exhibitors I saw the large poster display of Nicki, standing on the beach, her hands tucked in her pockets, and thumbs through her belt loops looking down smiling at me. I cried thinking… Nicki look at us…we did it! In November 2013 we displayed at the annual SNO (Society for Neuro-Oncology) meeting. My emotions went even deeper - to be part of this event surrounded by physicians, researchers and patient advocates all working together for the health and welfare of those battling brain tumors. n
Bunny Leach is CEO of the Nicki Leach Foundation, Author, and Life Coach CLC www.nickileach.org www.bunnyleach.com
RANO Criteria: A new yardstick to measure benefit of treatment By Kurt A. Jaeckle, MD Professor of Neurology and Oncology, Mayo Clinic, Florida, USA.
YOU would think that it would be easy to determine whether a new drug or treatment is helping. However, it is not as easy as it seems. Typically, physician investigators and ultimately regulatory agencies which approve and license such treatments such as the FDA (the Food and Drug Administration in the USA) and the EMA (European Medicines Agency), measure patient benefit of new therapies using 'endpoints'. Common endpoints have included factors such as: increase in overall survival or progression-free survival; tumor response on imaging studies; and more recently, patient- or caretakerreported improvement of quality of life or symptoms as measured on validated surveys. Performance on these endpoints with newer treatments are typically compared to expectations from older, established therapies. However with the exception of overall survival, each of these endpoints is relatively imprecise, as they are to a certain degree inherently subjective and potentially are influenced by other factors, such as intervening treatments (e.g., surgery) or unrelated medical illnesses (e.g., a heart attack or stroke).
RECIST and the MacDonald Criteria The Response Evaluation Criteria in Solid Tumors (RECIST) were developed in 2000 for all cancer types, as a measurement tool for response. However, the MacDonald criteria, developed in the 1980's have received more widespread application in brain tumor clinical trials. These criteria were developed to categorize response (or lack thereof) primarily to traditional chemotherapy 32
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Above: Dr Kurt Jaeckle
treatments, using a composite of tumor response on (mostly) CT scans, clinical functioning (better, stable or worse), and steroid treatment (which can affect interpretation of response). However, it became obvious by 2010 that these criteria needed updating, to take into account major advancements in MRI techniques, newer types of therapies such as angiogenesis inhibitors, which reduce edema causing 'pseudoresponse'; new molecular-targeted agents with new modes of action; new radiation techniques; and even unanticipated observations, such as treatment-related "pseudoprogression".
Response Assessment in NeuroOncology (RANO) Working Group As a result, in the late 2000s, an independent and voluntary committee, eventually named the Response Assessment in Neuro-Oncology (RANO) Working Group, began a series of ongoing meetings.
This committee included interested physician investigators, nurses, biostatisticians, scientists, and patient advocates among others. RANO is not part of any official group (eg the American Society of Clinical Oncology/ASCO, the European Association of Neuro-Oncology/ EANO or the Society for Neuro-Oncology/ SNO), nor is it connected with any industry. The charge and challenge of this group was to develop a comprehensive, modernized set of criteria which would be utilized to measure patient benefit following new treatments on clinical trials. The RANO criteria incorporated findings on MRI scans, steroid use, clinical status and exam, and addressed new factors such as pseudoprogression. The RANO criteria for assessment of treatment for high grade gliomas were initially published in 2010 ( J Clinical Oncol 28:1963-1972), and it is important to point out that this is a 'work in progress' that will likely be revised as new information and treatment types are developed.
RANO subcommittees Recognizing that different criteria might be needed for different types of brain tumors, members of the RANO working group organized several subcommittees, such as the NANO (Neurologic Assessment in Neuro-oncology), to standardize patient clinical examinations for clinical trials; RAPNO (RApediatricNO), to address the issues unique to children treated in pediatric neuro-oncology trials; and the leptomeningeal cancer RANO (LM-RANO). In addition, subcommittees of RANO have now published recommendations regarding assessment of other brain tumor subtypes, such as low grade gliomas, meningiomas, and brain metastases.
For the sake of people with brain tumors who participate in clinical trials, it is critical that both physicians and patients work together to develop the most accurate and efficient ways to determine whether new treatments are beneficial or not. Through the voluntary efforts of RANO, and the very important feedback from patients and caregivers, major steps have now been taken to achieve this goal. n
The 2014 International Brain Tumour Awareness Week is from 26th October to 1st November.
A suggestion from the IBTA… reduction of caregiver and family burden: a new measure of clinical benefit In the initial publication of the RANO criteria in the Journal of Clinical Oncology it was stated: “Growing data suggest that other end points such as neurocognitive function, quality of life, and corticosteroid use may be used to measure clinical benefit. At present, these end points are not sufficiently validated to be incorporated into the current response criteria but could be added in the future as further data emerge.” That statement offers some encouragement. We have seen how quality of life measurements were incorporated into the more recent studies of bevacizumab and glioblastoma but the results were contradictory. The IBTA believes that an additional secondary endpoint when investigating new therapies could be “reduction of caregiver and family burden”. For example, if a patient’s care previously required a caregiver to be readily available twenty-four hours a day and a new therapy resulted in a reduced caring obligation whereby the caregiver could obtain personal respite for several hours per week, then that should be factored into an evaluation of the treatment’s benefits. A tool measuring this benefit to a family or caregiver would need to be developed and this could be done
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using a survey to determine levels of reduction in the caregiving burden as a direct result of the therapy. For example, we are aware that there is a high burden of care among family members and caregivers looking after a person with a primary malignant brain tumour. In one survey 59% did not receive any financial aid for home care, 33% had increased risk for psychosomatic problems, 45% had anxiety, and 33% increased depression levels (Wasner et al 2013). A reduction in any of these burdens among caregivers would be very advantageous. It would also be interesting to investigate the relationship that a caregiver’s quality of life has on the patient. In a very recent Irish study of the economic impact of premature cancer-related mortality (Hanly and Sharp, BMC Cancer, 2014) the authors calculated the lost time from caring for a brain tumour patient as €3,620,861 (about $4,981,436 USD) for men and €9,001,068 (about $12,382,712 USD) for women in Ireland in 2009. If a new therapy results in a period of remission or improvement for the patient which, in turn, lessens the caring burden on a family or caregiver, then this should be factored in to the overall evaluation of the benefit of the new therapy. n
From the May 2013 IBTA E-News Exciting development: A consortium of 28 brain tumour researchers from institutions around the world recently published a paper on a conceptually new treatment approach for relapsed glioblastoma (GBM). The approach is called “CUSP9” which stands for “Coordinated undermining of survival paths with nine repurposed drugs”. According to the paper’s abstract, the CUSP9 treatment protocol is based on “a combination of drugs not traditionally thought of as cytotoxic chemotherapy agents but that have a robust history of being well-tolerated and are already marketed and used for other non-cancer indications.” The criteria for choosing the drugs included those that were pharmacologically wellcharacterised; had a low likelihood of side effect burden; showed evidence of interfering with a “recognized, wellcharacterized growth promoting element of glioblastoma” and when coordinated as an ensemble, “had reasonable likelihood of concerted activity against key biological factors of glioblastoma growth.” Nine drugs met these criteria: aprepitant, artesunate, auranofin, captopril, copper gluconate, disulfiram, ketoconazole, nelfinavir and sertraline. Lead author Professor Marc-Eric Halatsch (University of Ulm, Germany) said: "While the CUSP9 protocol is not clinically validated yet, a reasonable empirical and theoretical basis suggests safety and efficacy of this approach." The IBTA has always kept as open a mind as possible with regard to new treatment approaches for GBM. n
A Test of Courage and Strength …a patient’s ten year journey By Mary Ellen Maher, RN MSN, APN Advanced Practice Nurse in Neurosurgical Oncology, Northwestern Brain Tumor Institute, Chicago, USA
I
have been a neurosurgical oncology nurse for over 22 years at Northwestern in Chicago, Illinois (USA). Over the years I have met many patients that are a true testament of courage and strength. We see patients who come to clinic and have no idea why they are there, while others are searching for the right answer. These patients have been told there is an “abnormality on the scan.” Some patients may come and go - not requiring any immediate interventions, just serial scans for observation. For other patients, we are the beginning of a long and difficult journey that has many ramifications to their life, as they once knew it, as well as to their family. I would like to tell you the story of one brave patient, Irina. Irina presented to the office in 2004, after a several month history of facial twitching and pain. She went for an initial consultation with a neurologist who referred her for an MRI. The MRI revealed a 5cm tumor. 2004 marked the beginning of Irina’s journey of courage and strength. That first year she required three complex neurosurgical procedures. The procedures involved destabilizing her spine to gain access to the tumor through a transcervical approach. After this procedure she wore a Halo brace for six weeks until she underwent a spinal fusion to stabilize her spine. Since the tumor was very large and access was a challenge, she underwent her third procedure four months later. This procedure involved splitting her mandible to gain access to the tumor. Due to the complexity of this procedure she required a tracheostomy to protect her airway. After healing from the surgery, the tracheostomy was removed. 34
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Above: Irina Murray and Mary Ellen Maher, RN, MSN, APN
Five years go by; Irina struggles with the symptoms that are a consequence of the tumor and interventions including difficulty talking, swallowing and pain. Follow-up imaging reveals that the tumor has returned and she is scheduled for her next procedure, a craniotomy in April of 2009. Her swallowing issues progress and a feeding tube must be placed to maintain her nutritional needs. After the craniotomy, there is residual disease that is treated with Gamma Knife radiosurgery, a form of focused radiation. In 2011, the tumor recurred and Irina underwent a transnasal endoscopic approach, which was followed by proton beam therapy in 2012. In 2013, Irina began experiencing visual symptoms including double vision. January 2014 follow-up imaging revealed the tumor progressed again. She and her husband Ray met with Dr. James Chandler, now Surgical Director of the Northwestern Brain Tumor Institute, to discuss surgical options. This would be the last surgical intervention he could offer.
In February 2014 Irina underwent a transnasal endoscopic approach using the 3D Visionsense® microscope. This is a novel visualization solution that brings 3D and natural HD (high definition) stereoscopic sight to minimally invasive surgery (MIS). With advanced sensor technology and proprietary software, the system delivers depth perception, HD resolution images and maneuvering flexibility through the smallest access diameters. Ultimately, this means that over the last ten years, surgical technology has advanced to the point where the tumor can be accessed thru Irina’s nose, leaving no visible scars. Healing and recovery time are dramatically different from ten years prior, with shorter recovery times and no visible incisions. When you meet Irina, she puts on a brave front, smiles and states that she is doing great. When I recently spoke with Irina she was again smiling as she was waiting for a test. I was reflecting back at the amount of fortitude it would take to
“What lies behind us
and what lies before us are tiny matters compared to what lies within us.”
smile. I would like to say to all of the patients, yes I want to see your brave face, however what I really, really want to know is how you are doing as I want to help you on the difficult journey that you face. You are not alone. n Mary Ellen Maher can be contacted at mmaher@nmff.org
Ralph Waldo Emerson
continue to undergo multiple procedures that have so impacted her daily living. As a health care provider, every day we meet new patients and become reacquainted with our long term survivors. These patients exhibit such courage and strength as they undergo yet another follow up MRI, office visit or procedure. Patients, like Irina, put on their brave face when they come in for their followup visit. They express that all is well and
From the February 2013 IBTA E-News Cricket and brain tumours: A determined UK duo have smashed the world record for the longest indoor cricket session after batting non-stop for 48 hours in an effort to raise funds for brain tumour research. They were inspired by a teammate who has been treated for two brain tumours. n
CBTRUS CENTRAL BRAIN TUMOR REGISTRY OF THE UNITED STATES
CBTRUS provides a resource for timely, updated statistical data for all Primary Brain and Central Nervous System Tumors from population–based cancer registries in the United States.
More information can be found at www.cbtrus.org
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CBTRUS INCIDENCE SURVIVAL LIFETIME RISK PREVALENCE MORTALITY
From the June 2013 IBTA E-News Pratt and Whitney inquiry results: An 11-year study, costing $12 million, of 222,123 men and women who worked in one or more Connecticut (USA) Pratt and Whitney jet engine plants between 1976-2004, found no statistically significant elevations of the rate of cancer among workers. The study was overseen by the State Department of Health and undertaken by researchers at the University of Pittsburgh and the University of Illinois at Chicago and was prompted by the identification of an apparently disproportionate incidence of brain tumors among former workers. n
Good genetics or a good marriage: what’s more important in surviving glioblastoma? By Dr Virginia Stark-Vance Dallas, Texas, USA
VIRGINIA Stark-Vance is a practicing oncologist in Dallas, Texas and specializes in the treatment of primary and metastatic brain tumors. In 2005, her presentation at the World Federation of Neuro Oncology introduced Avastin as a potential drug in the fight against glioblastoma. Dr Stark-Vance is widely recognized among her colleagues for her innovative approaches to the treatment of brain tumors. With one of her patients, M L Dubay, she co-authored “100 Questions and Answers about Brain Tumors” (second edition published in 2011) and the pair also founded the Legacy Brain Foundation in 2006, an organization committed to help brain tumor patients and their families who are in need of financial support. In her own informal study of ten long-term survivors of glioblastoma (all but one of whom came from Texas), Dr Stark-Vance tested the hypothesis that brain tumor patients recognize the role which their spouses and caregivers play in their long term survival. The study threw up some surprising results and “Brain Tumour” magazine asked Dr Stark-Vance to share with our readers some of her findings. Long term brain tumor survivors are one of her chief interests.
Dr Virginia Stark-Vance's study of long term glioblastoma survivors tested the hypothesis that long term survivors of malignant glioma believe that caregivers and social support are critical factors in successful treatment outcomes. The study population consisted of patients who had survived malignant glioma (glioblastoma or low grade glioma which had transformed to glioblastoma) five years or more. Participants were asked to fill out a survey with questions concerning demographics, treatments utilized, and current perception of quality of life. A total of 36 questions were included; most were multiple choice with one or more answers possible. Respondents were encouraged to write their own answer if none of the choices accurately expressed their opinion. Most respondents also added written comments that did not address any particular question. n
SHORTLY after the shock of learning that the headaches you’ve had for the last two weeks have nothing to do with your boss and instead are related to a large tumor 36
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Above: Dr Virginia Stark-Vance with one of her patients, Sandra L. Sandra’s husband takes an annual photo when she comes in for a visit, and she and Dr Stark-Vance count Sandra’s years of survival on their fingers.
in your head, you learn that you have a glioblastoma. You grab your smartphone and hope you can spell “glioblastoma” well enough to Google it. Let’s see what Wikipedia has to say…but surely that 15 month life expectancy was old data! “No, there is just no way that can be true. I am going to beat this.” Glioblastoma has a well-deserved reputation as an aggressive, unpredictable,
malignant brain tumor that affects old and young, rich and poor, sickly and healthy, indiscriminately. Most factors affecting prognosis, such as age at diagnosis, location within the brain, and extent of resection cannot be modified by the patient. Without surgery and further treatment, the survival drops from months to weeks. Because of the tumor’s rapid growth and tendency to invade critical structures of
the midbrain, glioblastoma patients require close follow up and prompt initiation of therapy at recurrence. Thus a patient fortunate enough to survive five years after his initial treatment may battle a more resistant, more invasive tumor at recurrence.
Studies look at genetic links to prognosis There have been a number of studies investigating the genetic variability that seem to correlate with prognosis in glioblastoma. For example, Vishal Patel and his team from Case Western Reserve University in Ohio identified a 50-gene molecular signature in glioblastoma that was able to distinguish short-term survival (<225 days) from long-term survival (>635 days) with 80% accuracy. Other molecular characteristics, such as IDH 1 or 2 mutations, 1p/19q codeletions, and MGMT promoter methylation, have been widely studied as prognostic indicators in glioblastoma. At present, only a few biomarkers, such as MGMT methylation status, are widely used in planning treatment. In the future, it is hoped that determining the unique molecular profile of a patient’s tumor will help the physician design an effective therapy or “cocktail” of drugs targeting the tumor. But will more effective therapy result in more long-term survivors?
Factors impacting survival, from the patient perspective In my own emerging and unpublished study of long term survivors, many from my own practice, I asked patients who had survived their tumor at least five years what factors they believe had the most impact of their survival. Although all patients were required to have a pathology report to verify their diagnosis, there were no biological correlates obtained. Of the ten patients studied, three had survived more than ten years. Five had never had a recurrence of their tumor after their initial treatment. All had an initial resection of their tumor, and three had at least one surgery for recurrent tumor. All had received radiation therapy and temozolomide; only two did not receive any other chemotherapy. Two had participated in a clinical trial. I asked participants to reflect on their attitudes toward their prognosis at the time of their diagnosis and at the present 37
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time. I anticipated that most long-term survivors would answer affirmatively that “I was determined to survive and beat the odds.” But I encouraged participants to add comments to elaborate on their answers. Of the five patients who had never recurred, all stated that they believe it is unlikely that their tumor will recur. Without exception, patients who had a recurrence indicated that they would pursue further treatment (or would continue treatment). I expected that the question, “What is the single most important factor in your survival?” would divide patients into those who believed that treatment decisions and psychosocial factors were most important versus those who believed that tumor genetics were in their favor. However, the answer most frequently cited was “I believe God saved my life out of His mercy.” Several patients commented that spiritual matters had become more important to them since their diagnosis, and one even described his diagnosis as: “God blessed me with a much-needed wake up call.” Participants were equally divided in their response to the question of whether the genetic and molecular makeup of the tumor was an important factor in how well the tumor responded to treatment. Half agreed with the statement, “The genetic and molecular makeup is not as important as some people think, because my tumor had a ‘worse prognosis.’” Again, I was surprised that participants seemed committed to an opinion, as no one chose the option “The genetics are not important at all” or “I don’t know.”
What would you change about your treatment? Participants were asked, “If you could change one thing about your treatment, what would you have changed?” Choices included changing doctors, adding/ omitting radiation therapy or chemotherapy, and participation in a clinical trial. The most common answer among those who had never recurred was “Nothing.” However, when survivors were asked which of their treatments was the most difficult to tolerate, their answers were unique to their situation. One participant who had developed an infection at the craniotomy site stated that the three subsequent surgeries after her initial craniotomy were the hardest part
of her treatment. Another stated that he was still experiencing memory problems attributed to his radiation eleven years before. Of all of the side effects attributable to treatment, every participant, including those who had never recurred, listed fatigue as their most significant problem, with memory loss a close second.
The role of the caregiver Prior to the survey, I had anticipated that long-term survivors would attribute their survival to a supportive caregiver, in most cases a spouse, since all but one of the participants in the survey were married. To treating physicians it seems obvious that someone has to assist the patient with day-to-day tasks, as well as transportation and financial support, to successfully complete treatment. Moreover, fatigue and depression are nearly universal; the patient who has neither spouse nor children may well ask, “Why should I go through all this? Who cares if I don’t?” Although every participant acknowledged that the diagnosis was more difficult for the spouse and family than the patient himself, only one out of three married female participants noted that her husband’s support was critical to her survival. All six married male patients indicated, either in their answers, or in additional comments, that their wife was crucial to their survival. Since many of the patients focused on their religious beliefs affecting their survival, I will plan to study this question separately in the future. However, my hypothesis that brain tumor patients recognize the role that their spouses and caregivers play in their long term survival is not confirmed by my initial survey. Nevertheless, as clinicians we must recognize the caregiver’s role as crucial to the long term outcome of the patient, regardless of what the genetics may tell us! n
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Grandma, the neurosurgeon, a tree and me … a story of coincidences and love By Lanette Veres Founder and President of Gray Matters Foundation, United States
THIS is a story about a grandmother, a wonderful neurosurgeon, a tree and me. Twenty two years ago my grandmother was diagnosed with a brain tumour. She had surgery but her wishes were simple: “I want quality not quantity.” I clearly remember the day of the surgery. I had a big family so we filled the waiting room taking turns going in to give my grandmother hugs before she went for her operation. It was so tough. My grandmother was the rock and the foundation to which we all ran when needing solid ground. “Now what?” I thought. “Oh no, that ground is shaken.” I remember sitting in the waiting room when Dr Carrie Walters, the neurosurgeon, came out to give us an update. A few hours later pathology confirmed that Grandma had a brain tumour called glioblastoma. There was no Internet in those days so I actually went to the library and looked the word up in medical dictionaries. It was not good. I was so sad. I cried: “No, why her?” Not Grandma the kindest lady I knew. Sadly, Grandma died nine weeks later. The nine weeks seemed to go so fast. It was my first experience of death but it showed me that there was no room for fear. This experience of being with Grandma grew in me the peace to be with others needing comfort. It was like a little seed being planted, helping me grow into something I could never imagine. The amazing thing about that whole journey 22 years ago was little did I know that the very experience I was having to go through with my grandma was preparing me for my own challenges just a few years later and would eventually be the reason why I created The Gray Matters 38
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Above: Gray Matters Founder and President Lanette Veres (left) with her neurosurgeon, Dr Carrie Walters (right), in front of “The Tree”
Foundation, a 501(c)(3) not-for profit based in Arizona, USA. When Grandma died we bought a plant for Dr Walters the surgeon. Just a simple little plant. In our hearts we felt that it wasn’t a flower that would die in a week but that hopefully it would thrive and grow for a long time. If it was a plant it would represent not only a thank you from us to the surgeon, but it would represent life itself. Now go with me six years later. I was living a very comfortable life. I had a great job as a premier banker at a financial institution. I had high sales goals. I had moved up in the company pretty fast and loved what I did. I was a single mom raising my kids. Life was good. Five years into my career I started getting headaches. I assumed it was
stress headaches - after all my job was pretty stressful. I was responsible for some very high sales goals. I had to secure $4 million a quarter - I did $6 million. After going to the doctor and insisting on headache relief I was given a scan on the morning of 14th August 1998. A few hours later I got a telephone call. I was sitting at my desk. Yes! I was sitting at work and wasn’t even given the courtesy of being told the results of the scan in person. Instead, I was asked over the phone for the name of my pharmacy and told I had a mass on the right side of my brain and needed surgery. Incredulously, I said: “I have a brain tumor? My grandma died from that six years ago.” The man on the phone asked if I knew the neurosurgeon which I did.
So he set me up with a referral and my treatment journey began. The shock to my family and friends, and having to wait for the appointment, was horrible. But once we met with the neurosurgeon it all fell into place. It was Dr Carrie Walters, the person who had operated on my grandmother. When we realised the connection to my grandmother, Dr Walters said: “I have the tree you gave me.” “Tree?” I asked. “Well,” said Dr Walters, “it was a plant when you gave it to me but now it’s so big that I’ve had to move it outside.” Dr Walters then said: “I know you’re going to be fine. Your Grandma’s tree is alive. Now, let’s get this thing out of your head so you can feel better.” On the day of my neurosurgery, Dr Walters brought me a photo of “The Tree”. It was beautiful. Ironically, after my surgery a friend bought me a plant just like it. Mine is outside now too…and getting very big. I have had five neurosurgeries and
at my last surgery, I had a new surgeon because Dr Walters had retired. But Dr Walters attended my surgery anyway. She came into my room and she brought me a leaf from “The Tree”. She said: “I know you’re going to be fine. Your Grandma’s tree is big, beautiful and flourishing.” Dr Walters and I get together often and especially every year on my “tumorversary” to celebrate my life. We talk about how our story is like the tree. Dr Walters was the trunk, the strength that holds limbs that reach out to the world, following the sun. Some limbs are battered and some are stronger but the leaves are the product of all that the trunk shares. Dr Walters and I have come up with many metaphors for the tree over the years. On one anniversary, some years back, I found a tree tapestry in a frame. You add the leaves by sewing them in. So each year I give Dr Walters a leaf and thank her. It was Dr Walters’ dedication to her career that kept me alive. Her passion paid
off. Her care for my grandmother, although Grandma died, created a new life for me, a life lived through love. Now, through Gray Matters that love is extended to 21 countries and almost all 50 US States. There is one more thing I need to tell you about this story and this journey. Dr Walters became a neurosurgeon because her grandmother died from a glioblastoma. n
For more information on the Gray Matters Foundation, visit their website at www.graymattersfoundation.com
The 2014 International Brain Tumour Awareness Week is from 26th October to 1st November.
Novocure is proud to support the IBTA
www.novottftherapy.com
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Overcoming a brain tumor has been my greatest triumph and source of strength By Zack Hubbard, Freshman, Arizona State University, Tempe, Arizona, United States “THEY’VE found a brain tumor. You’re going to need surgery to remove it.” These words shook me to the core, but I quickly realized that this traumatic procedure was inevitable. I also realized that to rid myself of the horrible recurrent seizures that this growing mass called an astrocytoma was triggering, surgery had to be done. There are few things more frightening to a 14-year-old than experiencing a seizure. When they occurred, I would have no idea that I was having one, but at the same time, I knew something was wrong. Just as quickly as they would arise, I would come out of the seizure and re-enter the real world. As if I had finished sprinting a marathon, I couldn’t breathe. My heart wouldn’t stop pounding. Just moving was extremely taxing. I’d be exhausted for days afterward.
Seizures take their toll Because of my epilepsy, I had to give up running track and field completely. Unfortunately, after training for months to run a half marathon, I had a full blown seizure on Christmas Day, and we decided that I would not be able to run in the upcoming race. It was just too risky. My parents lived in constant fear of the seizures, always dreading the thought of seeing their son convulse uncontrollably once again. Having a seizure approximately once every week during that second semester, I was plagued with relentless anxiety of yet another attack and the overwhelming fatigue that it takes on the body. It’s safe to call this the worst period of my life. And so, after a sleepless night about three months past initially hearing the news, I underwent the operation 40
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Striving for greatness and never quitting
Above: A smiling 14 year old Zack Hubbard recovers from his successful surgery to remove a brain tumour in June 2009. Zack’s surgeon, Dr Rekate, is also pictured.
that would change my life forever. Coincidentally, the seizure I had while registering at Barrow Neurological Institute for my operation would be my last.
Returning to normal life The unexpected pain following the tumor removal was so excruciating, I cried that I wanted to die, but after several agonizing days in the hospital, and the removal of 17 staples in my head, I was able to go home and start the process of slowly returning to my every day, normal life. Today, I am thrilled to report a near complete recovery. Though horrifying, this experience has molded me into the person I am today. It has shown me that I have the inner strength to endure anything. This mental toughness has created within me an unbreakable will, a relentless determination that carries over into my academics and my athletic obsession of running.
Though I am neither the smartest student nor the best athlete, I never settle for mediocrity. I strive for greatness. I pride myself on persevering through whatever hardships that I face, and not just making it out alive, but growing stronger from adversity. I also have realized how incredibly blessed I am to have survived such a dangerous operation with near-perfect health today. At fundraisers, I see people walking in honor of fallen loved ones. At neurologist checkups, I see children in wheelchairs who can’t talk, children who suffer chronic seizures, children with muscular dystrophy, and children with severe retardation. They are my driving force and my inspiration. I strive to do all I can to make sure that no child has to go through what I did, or worse. To help a cause so close to my heart, I have organized teams for the National Brain Tumor Society in the United States three years in a row, raising a total of USD $5,150.
Efforts which make a difference to someone else’s life During my final year in Desert Vista High School in Phoenix, and as vice president of the school’s National Honor Society (NHS), I took it to the next level by creating and organizing a 5K Run/Walk for Students Supporting Brain Tumor Research (SSBTR – see www.ssbtr.org). This required over 100 hours of work to handle every logistical detail, coordinate the tasks of every volunteer, and publicize the event. It was a massive undertaking, but a great success. Over 500 people attended and we raised a total of USD $4,333 to
Above: Zack Hubbard at Thunder Stadium in Phoenix, Arizona - the location for the inaugural brain tumour awarenesss-raising event he organized on 11th November 2012
donate to SSBTR. It was such a success that both NHS and SSBTR wanted it to become an annual event. Now in college at Arizona State University (ASU), I continue my involvement with SSBTR, and have remotely coordinated new high school leaders to oversee the planning of the 2nd Annual 5k for SSBTR at Desert Vista. Under my close supervision and guidance, they did the groundwork on organizing the 2nd annual 5k for Brain Tumor Research at Desert Vista which took place on 23 March 2014. Some setbacks and rescheduling issues due to the weather limited our attendance, but we still raised over $3,500 for this incredibly worthy cause. That makes over $12,000 that I’ve raised in my lifetime, and I won’t be done until there is a cure. Despite all the challenges we faced, the officers and I are already planning next year’s 5k, and I’m certain it will be the biggest year yet. Even if we did not meet the monetary goals of this year’s event, we served as an inspiration for people
still fighting today. Giving hope to just one person in need makes it all worthwhile. My scope will not be limited to this high school event, however. Next year, at ASU, I plan to take charge of SSBTR here, spearheading a campaign to make the university a major factor in SSBTR once again. I plan on organizing an event at ASU, utilizing all the resources -- and people -- at my disposal, to make something truly unforgettable happen. My ambition is to organize a walk for all 70,000 students at Arizona State University. My dream is to rally thousands of students, both to spread general awareness of brain tumors and to raise funds for brain tumor research. Fighting epilepsy and a brain tumor has been my life’s greatest struggle, but overcoming it has become my greatest triumph and source of strength. My biggest hope is that my efforts will make a difference in someone’s life. n *A “freshman” is a first year university student in the United States.
From the July 2013 IBTA E-News Patient misdiagnosed with depression: In a succession of tragic errors a 34-year old man died from his brain tumour in Essex (UK) after being misdiagnosed for four weeks in 2011 by three senior doctors who treated him for depression. It was only when he lost the use of his right hand that his tumour was discovered. He initially presented with speech problems and was prescribed 20 mgs of citalopram, sleeping pills and referred for counselling. Later, staff at a hospital mental health unit could not understand him because of his speech problem and he left. After a year-long examination by the General Medical Council (GMC) two of the doctors were told to reflect upon the GMC’s expert’s findings and their assessments of the patient were found to “fall seriously below that of a reasonably competent GP”. The third doctor was found to have failed to consider other causes of the patient’s initial speech problems but no further action was taken. The patient’s grieving father wants the GPs suspended. The medical practice, in turn, has given the father a week to find another practice for his own medical needs, saying he is no longer welcome there. n
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Rare Cancers: » More than 20% of cancers diagnosed in the EU * » More than 4 million people in the EU affected * » More than 500,000 new cases per year in the EU * » Lower survival rates than for common cancers * Show your support and sign the
Call to Action Against Rare Cancers at www.rarecancerseurope.org.
Rare Cancers Europe is a multi-stakeholder partnership initiative addressing methodological and regulatory barriers in rare cancer care, the need for centres of expertise and European reference networks, barriers to patients’ access to care, education of healthcare professionals and access to information on rare cancers. For more information, please visit www.rarecancerseurope.org. * Source: Gatta G., et al.: Rare cancers are not so rare: The rare cancer burden in Europe. Eur J Cancer. 2011 Nov;47(17):2493-511.
5-ALA: an aid for identifying the infiltrative margins of malignant glioma By Professor Walter Stummer, MD, PhD, Chairman of Neurosurgery, Münster University Hospital, Münster, Germany
PROF Stummer is a world leader in the introduction and implementation of advanced fluorescence-based diagnostic methods in the operation microscope and microneurosurgery, and a key scientific developer of 5-ALA. Here, he writes about some of the challenges facing neurosurgeons in identifying the margins of infiltrative brain tumours. IN malignant glioma therapy surgery plays a major role. The last decades have demonstrated that the role of the surgeon is not simply to debulk the tumor and to establish histological diagnosis. It is well accepted that the greatest achievable degree of resection will benefit the patient and will set the stage for additional therapies to be as effective as possible, provided resections are safe. The surgeon is thereby faced with a challenge, to identify unclear margins of the tumor infiltrating the brain and, at the same time, to identify brain regions crucial for function, which are not simply evident from anatomy or tissue texture alone. Regarding safety, a number of methods have come into widespread use for locating brain function, some based on pre-operative imaging, such as functional MRI, MRI tractography or transcranial magnetic stimulation, mostly used in conjunction with neuronavigation. Even more importantly, intra-operative neurophysiological techniques, including brain mapping during awake craniotomies have now been adopted by many centers. Regarding tumor identification, neuronavigation also plays an important role. Due to the shift of brain tissue during resection however, identification of tumor or function using neuronavigation alone 42
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becomes uncertain during the later stages of surgery, when it is most needed. Aids to this problem are available, such as the intra-operative MRI. However, the intra-operative MRI is expensive and only accessible to selected centers and certainly not to every patient. Fluorescence-guided resections using 5-ALA (5-aminolevulinic acid) are a far more simple method for identifying malignant glioma tissue intra-operatively. The method requires standard surgical microscopes adopted for fluorescence which are offered by the major microscope manufacturers, and 5-ALA, a pharmaceutical compound which is dissolved in water and administered orally to the patient several hours prior to surgery. 5-ALA is taken up by malignant brain tumor cells where it is converted into a fluorescent dye (protoporphyrin IX). Using a special light this fluorescence can be made visible to the surgeon and thus will reveal malignant cells invading the brain. In Europe and other countries around the world, including Japan, Australia, Korea, Taiwan and Hong Kong, 5-ALA is officially approved and available to surgeons and patients. In other countries, including the United States, regulatory approval has not been granted so far with the Food and Drug Administration (FDA) not willing to follow EMA’s 2007 ruling for the approval of 5-ALA, EMA (European Medicines Agency) being the responsible health authority corresponding to the FDA in Europe. The FDA requires more complex, randomized trials in the USA, the costs of which are prohibitive to any company willing to follow this path. From the point of view of the neurosurgeon the position of the FDA is difficult to understand for not
approving this simple (diagnostic) imaging compound, which has proven safe and helpful for tens of thousands of malignant glioma patients outside the USA and other countries so far. Non-withstanding, several USA centers are actively involved in protocols for further exploring the value of 5-ALA in malignant brain tumor surgery in the scientific setting. Due to the well accepted usefulness of tumor fluorescence induced by 5-ALA, the term “fluorescence” has become tantamount to a useful tool for brain tumor surgery. This has prompted research into other paths for making tumors fluoresce, most of which are at a preclinical stage. Ongoing research is required and necessary of course, because methods might always be improved upon. Admittedly, 5-ALA is not the final solution to the problems the neurosurgeon is faced with when operating on patients with malignant gliomas. It is only a small part of the therapeutic armamentarium against this devastating disease, not only from the surgical point of view. Yet, for the moment it is certainly meaningful to be used during surgery in conjunction with many of the other tools neurosurgeons now have, and should be made available to as many brain tumor patients as possible in the setting of structured neurooncological care. n
Professor Walter Stummer is a key scientific developer of 5-ALA (Gliolan®) and has received consultant fees from Medac and Photonamic, its distributors.
the na'onal Australian organisa'on for the brain tumour pa'ent, family and caregiver
BTAA Inc offers: • links to brain tumour support groups • informa'on to assist making treatment decisions • peer support • advice to government • hope from the pa'ent, family and caregiver perspec've
www.btaa.org.au Freecall 1800 857 221 ABN 97 733 801 179. Incorporated in the ACT: AO4837
Saving lives through research, information, awareness and policy
thebraintumourcharity.org +44 (0)1252 749990 Registered Charity no. 1150054 (England and Wales) SC042096 (Scotland)
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The English Patient Who Was Also a Doctor An interview with Professor Jonathan Finlay, MD JONATHAN Lester Finlay is internationally recognized as a leading authority in the management of children, adolescents and young adults with brain tumors. Since 2003, he has been Professor of Pediatrics at the Keck School of Medicine, University of Southern California, and Director of the Neuro-oncology Program at the Childrenâ&#x20AC;&#x2122;s Hospital of Los Angeles. He was nominated and elected as a Fellow of the Royal College of Physicians (FRCP, London) in 2012. In 2013, he was appointed the Audrey and Billy Wilder Chair in Neuro-oncology and Director of a new, inter-departmental Neuro-oncology Program at Childrenâ&#x20AC;&#x2122;s Hospital, Los Angeles. IBTA: Where did you spend your childhood? Jonathan Finlay (JF): I was born and brought up in Manchester, England, the only son of Mark and Minne Finlay. At just shy of nine years of age, I commenced boarding school, where I attended until going up to university. At fourteen years of age, my parents and I moved to LythamSt. Annes, Lancashire, near Blackpool. IBTA: Did you come from a family environment that had a connection with medicine or research? JF: My older sister (from my mother's first marriage) worked as an assistant in a chemist shop, until she married at twentythree years old (when I was seven years old). One year later she was struck down with systemic lupus erythematosus, from which she died seven years later. Other than her, my only connection with the health professions was my Uncle Ralph Nelson - a dental 'mechanic' (ie. he made false teeth!). IBTA: What attracted you to medicine and later to the brain tumour area? JF: My sister's illness stimulated my curiosity in illness - and the inability for many of them to be successfully treated. By the time of her death, I had become committed to seeking a career in medicine, focussed on A-level science subjects, and I entered Birmingham University Medical School just before my nineteenth birthday. I "fell" for pediatrics - both for the children and for the less formal style of the pediatricians - during my fourth and final year rotations at Birmingham Children's Hospital. I developed an academic/ laboratory interest in autoimmune disorders 44
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Above: Professor Jonathan Finlay (left), IBTA Co-Director Kathy Oliver and the late Dr Ab Guha (right) at the 2007 SNO Conference
because of my sister's illness. After graduating medical school in 1973, and spending the required intern year in medicine and surgery, I undertook residency (senior house officer) positions in pediatrics, ending with a six month rotation in pediatric oncology at the Christie Hospital, Manchester, before moving to the USA in June 1976. If further incentive directing me towards pediatric oncology were needed, personal experiences 'crowned' my enthusiasm and ambition for this endeavor. In July 1975 I developed testicular seminoma, and I experienced both an oncologic surgical procedure followed by abdominal radiation therapy - for a condition, I was repeatedly reassured, would be certainly cured with this therapy. However, my cancer "did not read the textbooks", and just eight months later, during my position at the Christie Hospital,
I developed symptoms that led to a diagnosis of recurrence with metastases to my mediastinum and lungs. This time, cure was not presented as a likely option - my elderly radiotherapist in Manchester could cite only one long-term survivor in his entire career! This "reassuring" anecdote of survival was qualified by the late-effects of his treatment - he could no longer play the horn professionally in view of decline in lung function from the radiotherapy. I completed radiation treatment in Manchester just in time for my wedding in Madison, Wisconsin, where I commenced a Fellowship in Pediatric Immunology at the University of Wisconsin, followed two years later by a Fellowship at the same institution in Pediatric Hematology/Oncology. Following completion of my Fellowships in June 1982, I was recruited to Stanford University, largely to continue to conduct
laboratory research in hematopoesis. However, when I arrived, I was informed by Dr Michael Link (my senior by just one year) that, as the most junior recruit, I would also have to take on responsibility for the diseases no one else was interested in and that is how I began my career in the management of childhood, adolescent and young adult brain tumors. IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? JF: I consider that my own personal struggle with recurrent, metastatic cancer - albeit having survived it - provided me with a 'cock-eyed' optimistic view of the world and of illness, as well as a sense of meaning and purpose. For me, the glass is not simply either "half full versus half empty" - for me, it can be 95% empty and I focus on the 5% full! I recall the lovely thirteen year old boy with metastatic Wilm's tumor at the Christie Hospital who was so thrilled to be going for radiation therapy each day
along with his doctor receiving the same treatment. He did not survive, unlike me. I feel no 'survivor’s guilt" - simply gratitude which merits being repaid in the manner in which I conduct my life professionally. I have never shirked from permitting myself to become emotionally involved in the struggles of my patients and their families. The crucial, required ability is to be able to walk into the next patient's room and leave the emotions of the prior patient behind you.
Yorkshire walks
Above: Participants in Brain Tumour
IBTA: Do you anticipate any significant breakthrough in brain tumour therapies in the next ten years? If so, in what areas? JF: Yes, but not through the current vogue for whole genome sequencing and development of 'individualized’ targeted therapies. Cancer is far too clever to permit our understanding and characterizing of the 15 altered pathways and 35 or so genetic mutations (think of the possible number of permutations if that alone were true!) to lead to cures in all but the rare cancers with single or minimal pivotal mutations. n
Research and Support Across Yorkshire’s two awareness raising walks in 2013
Brain Tumour Research and Support Across Yorkshire (BTRS) have "raised" 2955 km for the “Walk Around The World for Brain Tumours” event in 2013. Fifty-four people walked 10 miles or 10k at our Canal Walk on 2nd November and on 22nd June 55 people walked 26 miles each over the Yorkshire Three Peaks in torrential rain. n
Connecting
Befriend TO
Enable And
Empower BRAIN TUMOUR SOCIETY
Cyprus Brain Tumour Association Offers Support and encouragement to brain tumour patients and their families Aims to achieve recognition of the specific challenges • brain tumour patients and their carers face in dealing with the disease Gives information for brain tumour patients to assist • making treatment decisions •
•
Supports research for the development of more effective therapies Tel.: 00357-99581230 / 00357-99871587
Email: cybraintumour@hotmail.com / masolomou@hotmail.com
(SINGAPORE)
www.braintumoursociety.org.sg enquiry@braintumoursociety.org.sg
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4B Agiou Damianou Street • 2054, Archangelos • Nicosia • Cyprus Facebook: Cyprus Brain Tumour Association
Glioma and pregnancy By Hanneke Zwinkels Nurse Practitioner Neuro-Oncology, Medical Center Haaglanden, The Hague, The Netherlands
and Prof Martin Taphoorn, MD, Neurologist-Oncologist, Medical Center The Hague, and VU Medical Center Amsterdam, The Netherlands
YOUNG female patients with a glioma may wish to become pregnant. Extensive literature about glioma in association with pregnancy is lacking, but what we do know is that once a woman with a glioma becomes pregnant, the pregnancy may influence glioma behaviour and, vice versa, the glioma may affect the course of pregnancy. Improvements in the treatment of and prognosis for glioma patients over the last 10-15 years may have made it easier for women with a brain tumour to decide on having a child. Nevertheless, the areas of uncertainty include the risk of tumour progression during pregnancy, the potential need of anti-tumour therapy and its potential hazards for the unborn baby, problems associated with seizure control together with the risk of congenital abnormalities potentially caused by anticonvulsants, and the timing and choice of obstetrical interventions. In a study based on observations in the female population in a neurooncology unit in a Dutch hospital together with a systematic review of the literature (Zwinkels et al, J Neuroncol 2013) we reported on women who became pregnant after they were diagnosed with a glioma and women who were diagnosed with a glioma during their pregnancy. We have tried to answer four major questions: 1. What is the effect of pregnancy on glioma behaviour? 2. How should a glioma be treated during pregnancy considering the impact of antitumour therapy on the fetus? 3. What is the appropriate anticonvulsant regimen in pregnant glioma patients? 4. What precautions or interventions are needed at the time of (premature) delivery? 46
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on glioma behaviour with a possible exacerbation of neurological symptoms, which might necessitate special treatment approaches.
Treatment options during pregnancy
Above: Hanneke Zwinkels (left) and Martin Taphoorn (right)
Potential effects of pregnancy on tumor behavior In the review of previously reported studies neurological deterioration or progression of the tumour occurred in almost 30% of pregnant women who were known before pregnancy to have a low-grade glioma as well as in healthy pregnant women who presented during pregnancy with a suspected high-grade glioma, mostly in the late second and third trimester. In addition, there are indications that in pregnant women diagnosed with a glioma but without clinical signs of progression, neuro-imaging may well show an increase in tumour volume. Several physiological changes may contribute to these phenomena. In a pregnant woman an increase in blood volume as well as fluid retention occur, which may lead to brain edema (brain swelling) possibly leading to symptoms. Hormonal mechanisms may play a role, in the development of edema. There are indications that pregnancy hormones â&#x20AC;&#x201C; as well as hormones used with in-vitro fertilization (IVF) - might also enhance tumour growth. We can conclude that pregnancy may have a negative impact
The timing of resection of the tumour during pregnancy is dependent on the severity of neurological symptoms, the gestational age of the fetus and the presumed histology of the tumour. Resection, radiation and chemotherapy have all been reported to be feasible during pregnancy without major adverse effects on either the mother or the unborn child. Case series indicate that all types of anti-tumour interventions have been applied during pregnancy. A craniotomy can be safely performed, although deferring surgery in stable patients and allowing pregnancy to go to term would be another possible option if the neurological condition and imaging findings permit, as well as performing brain surgery shortly after an early caesarian section. The timing of chemotherapy and radiotherapy should be deferred until the second or third trimester because of the risks of congenital malformations when applied in the first trimester. Reviews of chemotherapy and radiotherapy during pregnancy indicate that there is a paucity of information on the long term development of the newborn.
Seizures and anti-epilepsy drugs (AEDs) Main concerns of epilepsy during pregnancy are maternal and fetal risks from uncontrolled seizures as well as negative effects of anticonvulsant therapy on the newborn. Reported occurrence of seizures in pregnant women with brain tumours is 24% -31%. Based on the
cases from the systematic review (n=103), we noted that of 27% of women with seizures during pregnancy, three of them presented with a status epilepticus, 19% had either new onset or an increase in seizure frequency at the time of recurrence of the glioma or of tumour diagnosis or during pregnancy. Lamotrigine or levetiracetam as anticonvulsant monotherapy are considered to carry lesser risks of congenital abnormalities than the older anticonvulsants. Therapeutic drug monitoring is recommended as both these agents show accelerated elimination in the second and third trimester, so that dose adjustment may be necessary. Within two to three days following delivery, dosages need to be re-adjusted to the original dose. Some authors advise applying prophylactic AEDs in pregnant women with glioma.
Obstetrical observations In case of increased intracranial pressure (ICP) at the time of delivery, some physicians
advise caesarean delivery under general anesthesia in order to avoid pushing during the second stage of labor. We would advise against using epidural anesthesia when there are signs of ICP, because of the risk of puncturing the dura mater (the thick membrane surrounding the spinal cord). Once the lungs of the unborn child have matured, delivery can safely be performed as soon as the beginning of the third trimester.
Conclusions and recommendations A number of specific recommendations can be given concerning glioma in pregnancy. If a patient with a glioma expresses the wish to become pregnant, we advise counseling of both the patient and her partner on the potential risks of tumour progression and malignant transformation during the pregnancy by a multidisciplinary team (neurologist, neurosurgeon, obstetrician, pediatrician, anesthesiologist). If a woman with a glioma needs IVF to become pregnant, we would advise against hormonal stimulation considering the risks of tumour growth.
The onset of any new focal neurological deficits in a pregnant woman diagnosed with or suspected of having a glioma should preferably lead to immediate neuro-imaging, which is best achieved by MRI. Gadoliniumbased contrast agents have not been shown to cause birth defects. Thus, a contrastenhanced MRI should not be withheld for assisting with possible treatment decisions. A follow-up MRI as a routine procedure is advised at 32-36 weeks of gestation. The advantage of such timing of neuro-imaging is close monitoring of tumour progression without undue risks for the unborn child, and that both induction of labor and tumour therapy can be initiated if necessary. Depending on the hazards of increased intracranial pressure during delivery, an elective caesarean delivery rather than a vaginal delivery should be considered, when the lungs of the unborn have matured. n Hanneke Zwinkels may be contacted at h.zwinkels@mchaaglanden.nl
In the U.S. alone,
700,000 people are living with a brain tumor diagnosis. There are 120 different types of brain tumors. This year, 14,000 people will die from a brain tumor. More than 500 people will be diagnosed today.
elisabethrosmansilla@yahoo.es ggcastellvi@gmail.com
There is no one answer. There is one leading resource.
Learn more at www.abta.org or call 800-886-ABTA (2282).
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IBTA ad 2013 FINAL.indd 1
2/5/13 10:18 AM
An interview with Dr Tracy Batchelor DR Tracy Batchelor is Giovanni Armenise ÂŹ Harvard Professor of Neurology, Harvard Medical School. He is Executive Director, Stephen E. and Catherine Pappas Center for Neuro-Oncology at Massachusetts General Hospital and Co-Leader, Brain Cancer Program at the Dana-Farber/ Harvard Cancer Center. IBTA: Where were you born and where did you undertake your early studies? Tracy Batchelor (TB): I was born in Abbeville, Georgia, a town with a population of less than 1000. I attended public school then completed my undergraduate and medical studies at Emory University in Atlanta, Georgia. I also went on to receive graduate degrees at Harvard University. IBTA: Was there anything in your family or personal background that led you into medical studies and neuro-oncology in particular? TB: My grandfather was a general practitioner in my home town. Although he died before I was born, I grew up hearing stories about his skills and compassion as a physician and this definitely influenced my decision to pursue a career in medicine. IBTA: You were the Principal Investigator (PI) in the cediranib trial and once addressed a meeting with brain tumour patient advocates before the launch of the trial to obtain their thoughts about what was being proposed. This was an unusual occurrence. Was it useful? Would you recommend this kind of initiative to other PIâ&#x20AC;&#x2122;s? TB: I meet with patients and patient families on a daily basis so for me this seemed like a natural and critical exercise. I believe the advocates were instrumental in getting the word out about our trial and I think that this can be extremely useful as we endeavor to enroll more patients with brain tumors onto clinical trials. 48
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Above:Tracy Batchelor and family at the 2013 REDLANO meeting in Cartagena, Colombia
IBTA: Even though cediranib did not progress to a Phase III trial how would you rate the insights that the phase II trial generated? Is it still being studied elsewhere? TB: We learned a great deal about the biological responses of glioblastoma to anti-angiogenic treatment in the cediranib studies. We believe that there are subsets of glioblastoma patients who are more sensitive to anti-angiogenic therapies than others. It is defining this group of patients most likely to derive durable benefits from this group of agents that is now the focus of our work. For example, my research funding from the National Cancer Institute supports our work in identifying patients most likely to benefit from bevacizumab [Avastin]. We are also examining the potential impact that bevacizumab has on the delivery of temozolomide in these studies as we hypothesize that it may enhance the delivery of chemotherapy rather than impeding it in certain subpopulations of glioblastoma patients. IBTA: We note your involvement with Primary Central Nervous System Lymphoma (PCNSL) tumour research. The International PCNSL Collaborative
Above: Dr Batchelor is co-editor of a textbook on PCNSL. This is the cover of the book.
Group (IPCG), which you co-chair, does not appear to be well known among patients. Can you tell us a little about its work? TB: The International PCNSL Collaborative Group was established just over a decade ago at a meeting in Lugano, Switzerland.
Drs. Franco Cavalli and James Armitage were instrumental in the creation of this group. It is an honor for me to have served as co-chair of the group, along with Franco Cavalli, since its inception. The goal of the IPCG is to improve research collaboration for this rare tumor and to improve patient outcomes. Our group has over 125 members from over 20 countries in the fields of hematology, neuro-oncology, medical oncology, pathology and surgery. We have received over a decade of support from the (USA) National Cancer Institute to sponsor the IPCG meeting each year as part of the annual American Society of Hematology meeting. We have completed more than a dozen international collaborative studies that have been published in excellent journals including Blood, Journal of Clinical Oncology and Annals of Oncology. We have established guidelines for enrollment of PCNSL patients in clinical trials, response assessment and a neurocognitive instrument for use in longterm assessment of PCNSL patients. Perhaps most importantly, the collaboration and ongoing dialogue among our members has served as the ultimate basis for the launch of multiple randomized trials in PCNSL. When I first became interested in PCNSL more than a decade ago there was only one published randomized trial that had been terminated prematurely. Today, two randomized trials have been published, three have recently been completed and four are ongoing. I believe the IPCG has played an instrumental role in this success. IBTA: As co-editor of a textbook on PCNSL how do you see the future role of the traditional textbook in the context of digital and on-line publishing? TB: The future textbook will be an on-line, continuously updated site accessible to practitioners around the world. The potential for high-quality imaging, streaming video and portals of interaction with chapter authors or editors is tremendous. I hope that cost and Internet availability and access will not be prohibitive in this new world as there is such great potential for wide dissemination of knowledge. 49
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IBTA: Where do you see the likelihood of any breakthroughs in the future treatment of brain tumours, particularly glioblastomas? TB: Targeted therapeutics have emerged as effective agents in a number of solid and hematological malignancies and may ultimately have a role in neuro-oncology. There is one targeted agent approved in neuro-oncology, the mtorc inhibitor, everolimus, for subependymal giant cell astrocytoma (SEGA) in the setting of tuberous sclerosis. Glioblastoma, of course, is a much more complex tumor than SEGA so it is likely that agents targeting specific signal transduction pathways will only be effective in smaller molecular subsets of glioblastoma. Designing trials in these subpopulations remains a challenge for the field. Angiogenesis remains a viable target in glioblastoma and studies are ongoing to determine whether anti-angiogenic drugs either alone or in combination with chemotherapy may extend survival in recurrent glioblastoma. As I noted before, there may be subsets of glioblastoma that are especially sensitive to anti-angiogenic agents and identifying these treatment-sensitive groups is a high priority.
Immunotherapy is emerging as a promising experimental approach and may circumvent the problem of molecular heterogeneity. However, these trials are relatively earlier in their development. While surgery, radiation and temozolomide will remain the standard of care for glioblastoma, in the near future I hope that, ultimately, targeted therapeutics, anti-angiogenic agents and immunotherapies will augment the limited response that we observe with these standard approaches. IBTA: How do you relax? Do you have any hobbies? TB: I enjoy reading a great deal, especially history. Currently, I am reading a series of excellent books on World War I in this Centennial Year since the start of the Great War. I also enjoy hiking and I am fortunate to live in a small New England town with multiple trails and forests available for this activity. Finally, my sport as a youth was baseball and I enjoy attending Boston Red Sox games at Fenway Park and I have thoroughly enjoyed coaching my son's Little League and Babe Ruth baseball teams over the years. n
A right royal walk!
Above: Some of the 422 participants in The Brain Tumour Charity’s Twilight Walk in Royal Windsor, Berkshire, UK. Windsor Castle is in the background.
The Brain Tumour Charity (UK) held a Twilight Walk on 6 October 2013 in Royal Windsor, Berkshire. A total of 422 participants walked 10k each and completed 2,616 miles which were symbolically “donated” to the IBTA’s “Walk Around the World for
Brain Tumours”. The event raised £90,000 for The Brain Tumour Charity. As the sun was starting to set, walkers took in famous sights at every turn, including Windsor Castle, the River Thames, the Long Walk and the historic town centre. n
Supporting children with brain tumours and other cancers in South Africa By Bonita Shannon Suckling founder of Rainbows and Smiles
Above: Bonita Suckling and her son Jed who was diagnosed with an anaplastic astrocytoma and who was the inspiration behind Bonita’s organisation in South Africa, Rainbows and Smiles.
I
established Rainbows and Smiles, a South African based PBO (Public Benefit Organization) after I lost my only son to brain cancer. Jed Brady Suckling, the inspiration behind this small foundation, passed away after a two year, 11 month struggle with an aggressive and rare brain tumor - anaplastic astrocytoma. My courageous and determined little boy loved to hand out presents to his friends while they received chemotherapy, had radiation, after surgery or when they visited the hospital. The foundation was started to deliver smiles to children fighting cancer. Rainbows and Smiles has since expanded support into various other areas. The team which volunteers for Rainbows and Smiles are all part of my close friendship circle and were touched by our family’s journey in some way. These volunteers devote their personal time to making the foundation a success. Statistics for childhood cancer in South Africa have not been published, but there 50
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is data that suggests that each year 70 to 80 children per million are diagnosed with cancer – a total of about 500 to 600 children each year. It is the belief of the foundation that many children die of childhood cancer before they are even diagnosed or treated. This is why continuous education and awareness is essential. The last two years have witnessed great accomplishments by the foundation. Pretoria’s Oncology Hospital’s outside play area has been upgraded; a new roof for the oncology ward play area has been installed; n new shading has been put up outside the children’s ward; n new scales for accurate weight and height measurements are now in place; n medical bills have been paid; n grocery vouchers have been distributed to deprived families; n craft days at the hospitals have been held; n birthday parties have taken place; n toys and activity sets have been delivered; n the wards have been re-decorated; n awareness talks have been given at schools, n education campaigns by blood banks n
Above: The Rainbows Team from South Africa, front row, left to right: Candice Grobbelaar, Bonita Suckling, Barbara Grobbelaar. Back row, left to right: Mandi Higgins and Lynn Kallides
and universities are ongoing with the aim of educating the public on early warning signs of childhood cancer; n funerals have been arranged for precious children who passed away; n support has been given to mothers and siblings of children who have passed away The foundation’s mission is to continue to make available emotional, social and financial support to families and caregivers in need when their child is diagnosed with cancer. In addition, Rainbows and Smiles continues to advocate, educate and promote early detection. Our principles include creating hope, smiles and relief for families and caregivers of children with cancer. At this stage we are not aware of any support groups here for adults with brain cancer, and we hope that in the near future we will establish an organization to support the many adults fighting this terrible disease in our beautiful country, South Africa. n
Astro Fund IBTA 2011 advert_Layout 1 29/01/2013 11:55 Page 1
Transforming tomorrow,
today.
Charity No. 113356
FINDING A CURE FOR BRAIN TUMOURS
Funding research and offering information, inspiration and hope for those affected by slow-growing brain tumours.
• Driving research to accelerate discovery of new therapies • Educating and empowering brain tumor patients and families • Advocating on brain tumor issues • Raising awareness • Inspiring hope
Low-grade brain tumours can lie undetected for many years before symptoms suddenly appear and turn victims’ lives upside down. They cause progressive mental and physical problems, and sometimes transform to a more malignant form of brain tumour. Astro Fund is working hard to end the anguish for those living with this devastating form of cancer by funding research throughout the UK and providing two international online support groups for patients and carers.
01485 57 27 67 info@astrofund.org.uk or browse our website at www.astrofund.org.uk For more details, please contact us on email
The Norwegian Brain Tumour Association The Association was established in 2009 and is an independent, national organisation for people who have or have had brain tumours, their families and other interested parties.
Please see www.hjernesvulst.no If you are interested to sign in as a member or learn more about us, please contact us at post@hjernesvulst.no
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Learn more at www.braintumor.org
Who decides what matters most in brain and spinal cord tumour research? News from the James Lind Alliance Priority Setting Partnership for Neuro-Oncology GUIDED by the principles of the James Lind Alliance Priority Setting Partnership (JLA PSP), the Neuro-Oncology Group has been set up in the United Kingdom to identify the most important unanswered clinical questions about the causes, diagnosis, treatment and management of primary brain and spinal cord tumours from the perspective of people directly affected by them and those who care for them. The project, run by a network of patients, relatives, health professionals and charity/not-for-profit representatives, is being led by Consultant Neurologist Dr Robin Grant, based in Edinburgh. Dr Grant said: “This is a unique opportunity for people who have been affected by brain or spinal cord tumours to influence the direction of future clinical research to improve the diagnosis, treatment and management of these tumours. We invited people of all backgrounds and ages - whether patients, relatives or health professionals - to tell us what the most important questions are from their point of view by filling in our survey”. The project is sponsored by the University of Edinburgh and NHS Lothian in the UK and is being supported financially by the Cochrane Collaboration’s Neuro-Oncology Group, brainstrust, The Brain Tumour Charity, Brain Tumour Research and Children with Cancer UK.
Questions could be answered by the right research David Smith MBE is the spinal cord patient representative for the Neuro-Oncology Group. David competed for Great Britain in karate (1993-1999) and bobsleigh (2002-2008). He underwent surgery for a spinal cord tumour in 2010 and traded in his bobsleigh career for adaptive rowing, taking home Gold for Great Britain 52
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Above: Prior to his diagnosis of a spinal cord tumour, the UK’s David Smith was a bobsleigh champion. He later won Gold for Great Britain in adaptive rowing at the 2012 Paralympics in London.
in the 2012 Paralympics (http://www. davidasmith.co.uk/). David was honoured by Her Majesty Queen Elizabeth in the 2013 New Year Honours List with an MBE (Member of the Order of the British Empire). David said: “I hope this project will raise awareness about brain and spinal cord tumours. The more people talk about them, the more attention will be paid to them and hopefully this will really improve things for the people affected. People with a tumour have so many questions and there are so many uncertainties about causes and treatment and prognosis that could be answered with the right research.” The Neuro-Oncology JLA PSP group has two other patient representatives, along with clinicians from adult neurooncology, paediatric neuro-oncology, neurosurgery, psychiatry, palliative care and neuropathology. The group also
has representatives from four patient organisations, including the IBTA.
Questions submitted via an online survey In Spring 2013, via e-newsletters and other promotional tools, the brain and spinal cord tumour community (including people who live outside the UK and are affected by these diseases or involved in these fields as professionals) were asked to complete a paper or online survey in which they could list as many questions as they had about any aspect of diagnosis, treatment and management of brain and spinal cord tumours. As Brain Tumour magazine went to press, many questions had already been submitted from around the UK and the rest of the world. The project is ongoing and the next stage of the initiative involves checking all of the questions against existing scientific
research to see if the answers are already known. Once the already-answered questions are removed from the list, and there still remains a large number of truly unanswered questions, this remaining long list will be prioritised through a second survey to establish a shortlist.
Finding the “Top 10” The shortlist of questions will then go forward to a ‘Priority Setting Workshop’ in order to finally arrive at a “Top 10” of what matters most to people affected by brain or spinal cord tumours. The final Top 10 priority topics will be promoted to research organisations and funders such as the National Institute of Health Research UK and the European Organisation for Research and Treatment of Cancer (EORTC), among others, towards the end of this year. By working in partnership and bringing together patients, their families and representatives of health professionals from across many disciplines, the JLA PSP Neuro-Oncology Group hopes to ensure
53
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that the money and manpower available for brain and spinal cord tumour research is directed at the issues that matter most to the people affected most. n
More information is available from Laura MacDonald, Julia Day or Robin Grant at jlagroup@exseed. ed.ac.uk or by telephoning 011 44 131 537 2875 (UK). The JLA PSP Neuro-Oncology Group’s website is here: http://www.neuro-oncology. org.uk/ and further information about the James Lind Alliance is here: http://www.lindalliance.org/
Raise awareness of the challenges of brain tumours - plan an event for International Brain Tumour Awareness Week 2014 (26th October to 1st November)
From the March 2013 IBTA E-News Radiation-induced skin reaction (RISR): Despite an extensive review of existing studies researchers were unable to identify any single intervention for reducing RISR, although one meta-analysis identified oral Wobe-Mugos E as being relevant. n
From the March 2013 IBTA E-News Dopamine antagonists: Researchers in the USA have suggested, on the basis of research of cultured cells and mouse models, that FDA-approved dopamine antagonists, may also have potential as glioblastoma therapeutic agents. n
Understanding Brain Tumor Statistics By Carol Kruchko President and Administrator, Central Brain Tumour Registry of the United States (CBTRUS)
M
ore than twenty-six years ago, I was introduced to the community of cancer surveillance and cancer registration of brain and central nervous system (CNS) tumors as a result of losing my three-yearold son to a medulloblastoma. While cancer registration is guided by certain collection and reporting regulations, I learned that the registration of brain and central nervous system tumors does not always adhere to this paradigm. Worldwide, cancer surveillance seeks information on primary cancers in a global population (population-based) and is guided by a coding system, the International Classification of Diseases for Oncology (ICD-O). An ICD-O code has ten digits or characters. Each set of digits and characters defines a tumor's site, histology, behavior, or grade. It is a tool used globally to standardize the recording of primary cancers. However, the grade assigned to brain and CNS tumors is defined by the World Health Organization (WHO). The ICD-O grade is a more general grading system for cancer. The WHO grade for CNS tumors is collected by some cancer registries, but not all. Even though the originators of ICD-O allowed for the behavior code to include benign, uncertain, or malignant tumors, collection and reporting were restricted to exclude benign and uncertain brain tumors. Hence, collection of brain and CNS tumors was historically incomplete.
The US brain tumor community takes action Having an incomplete collection practice for all brain and CNS tumors provoked action by the brain tumor patient advocacy community in the United States. Their actions ultimately resulted in the enactment of Public Law 107260 which changed the collection practices. As of January 1, 2004, collection of primary 54
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Above: Carol Kruchko, President and Administrator of CBTRUS (centre), pictured with IBTA Co-Directors Kathy Oliver (left) and Denis Strangman (right) at the IBTAâ&#x20AC;&#x2122;s First World Summit of Brain Tumour Patient Advocates in California in 2013. Photo Š Paolo Salcido (www.salcidoarts.com) reprinted with permission
Above: CBTRUS Research investigators at Case Western Reserve University (from left to right) Jill Barnholtz-Sloan, PhD (Principal Investigator); Yingli Wolinsky, PhD, MBA; Yanwen Chen, PhD, MS, Masters Statistician; Haley Gittleman, Masters Statistician; Quinn Ostrom, MPH
brain tumors became regulated by a site definition not a behavior definition enabling the inclusion of primary brain tumors with a benign or uncertain behavior along with those having a malignant behavior. However, since this is a relatively new practice, by cancer surveillance standards, variation in reporting continues in the United States. For example, the American Cancer Society, reports data on primary malignant brain and CNS tumors and excludes primary benign and uncertain ones. There
is no law which guides global collection and reporting practices. Countries report their cancer information voluntarily, but certain standards must be met before these data are incorporated into global reports.
The worldwide situation The recent GLOBOCAN 2012 Report provided by the International Agency for Research on Cancer (IARC) of the WHO provides estimates of cancer incidence, mortality, and prevalence worldwide. It is restricted to primary, malignant brain and CNS tumors
Above: Schematic of Cancer Registration Process Resulting in CBTRUS Statistical Reports
metastatic tumors, they restricted the study to primary brain tumors. Based on GLOBOCAN 2002 there were 189,485 new malignant brain tumors reported globally in 2002. Using an innovative methodology based on the GLOBOCAN 2002 data, the worldwide incident number for all “benign” brain tumors diagnosed in 2002 was 186,678. Therefore, the total number of all primary brain tumors estimated worldwide in 2002 was 376,163. The study was subsequently published in 2009[3]. The term “benign” used in this manuscript includes both ICD-O behavior codes of "benign" and “uncertain". The authors concluded that the number of these “benign” tumors could exceed the number of malignant brain tumors globally[4]. In the 2012 and 2013 CBTRUS Reports, the incidence of non-malignant brain tumors exceeded the incidence of malignant brain tumors in the United States with meningioma being the most common histology of all primary brain tumors. While cancer registration is guided by certain collection and reporting regulations, cancer registration of brain and CNS tumors includes exceptions to these rules, so CBTRUS checks for key words that act as guideposts in interpreting their statistical information in order to provide complete and accurate data. n
Notes [1] Ferlay J, Soerjomataram I, Ervik M, Dikshit R, Eser S, Mathers C, Rebelo M, Parkin DM, Forman D, Bray, F. GLOBOCAN 2012 v1.0, Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 11 [Internet].
Above: Distribution of All Primary Brain Tumors in the United States by Behavior, CBTRUS Statistical
Lyon, France: International Agency for
Report: NPCR and SEER, 2006-2010
Research on Cancer; 2013. Available from: http://globocan.iarc.fr, accessed on day/
and reports an estimated incident number of 256,213 for both sexes globally[1]. Hence, there is no brain tumor registry in the world which reports currently available population-based incidence on all primary brain and CNS tumors by histology, histology groups, age, gender, race and Hispanic ethnicity on a yearly basis except for the Central Brain Tumor Registry of the United States (CBTRUS). CBTRUS’ Statistical Reports and its Consensus Conference on Brain Definition[2] held in 2000 contributed to the change in collection practices in 55
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the United States. Even though CBTRUS is restricted to the US population, it has influenced the establishment of population-based brain tumor registries in other countries.
month/year. [2] McCarthy B.J., Surawicz T., Bruner J.M., Kruchko C., Davis F. Consensus Conference on brain definition for registration. November 10, 2000. Neuro-Oncology. April 2002; 4(2):134145.
IBTA-commissioned research
[3] McCarthy B.J., Schellinger K. A., Propp
In 2006, the International Brain Tumour Alliance (IBTA), realizing there were no global statistics for all brain tumors, commissioned CBTRUS to undertake an investigation of global incidence of all brain tumors. After learning that population-based cancer registries do not collect data on
J.M., Kruchko C., Malmer B. A Case for the Worldwide Collection of Primary Benign Brain Tumors. Neuroepidemiology July 31, 2009; 268-275. [4] Ibid.
Counting brain tumours in Canada By Jennifer Gouchie Chairperson of the Canadian group b.r.a.i.n.child. JENNIFER, who has advocated for more accurate brain tumour statistical information in Canada, told Brain Tumour magazine: “Incomplete data collection on brain tumours continues to be a concern in Canada. To date, brain tumor statistics have relied on data from a number of American and Canadian resources to guide Canadian research, secure funding, provide programs and raise awareness. But current data are incomplete and not a true reflection of Canada's brain tumour community. While some organizations do produce useful data, full data on the primary brain tumour population are not collected resulting in misreporting of the incidence and prevalence of brain tumours. In fact, in the province of Ontario non-malignant brain tumours are not counted at all. Accurate information about the number of brain tumour patients across Canada is critical to their best treatment, care and to finding efficiencies in the system. This issue has been addressed nationally through a Parliament of Canada 2007 Private Members Bill (M235). Led by the Canadian Alliance of Brain Tumour Organizations (CABTO), the bill and resulting follow-up
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efforts are focused on influencing the cancer registry system in Canada to effectively and efficiently track all types of brain tumours – malignant and non-malignant. Several key steps were taken in 2013 towards counting every brain tumour in Canada including the feasibility stage of the Canadian Brain Tumour Registry project which is well underway. Leading Canadian Epidemiologist Dr. Faith Davis has met with several researchers, clinicians, advocates and representatives of government agencies over the past year to gain more insight into the current state of data collection on brain tumours in Canada, the key players and the work that needs to be done. This included a meeting in October 2013 that brought together all major stakeholders including the Public Health Agency of Canada, the Canadian Council of Cancer Registries, the Canadian Alliance of Brain Tumour Organizations, the research and clinical community and Brain Tumour Foundation of Canada's advocacy and research volunteers. The next step in this on-going initiative includes an interim report, a pilot project and a deeper examination of the data that currently exist.” n
From the December 2013 IBTA E-News Uganda: A team of surgeons from Duke University, North Carolina, USA, recently held a one-week neurosurgery camp at Mulago National referral hospital in Uganda where they were able to operate on 24 patients. n
Passing of Lily (Ljubica) Grbavac 1935 – 2014, Canberra, Australia IBTA Chair and Canberra resident Denis Strangman recalls that Lily Grbavac and her husband were among the early supporters of brain tumour advocacy in Australia in 2002 when funds were needed to print a brochure for the now-defunct Brain Tumour Australia (it was dissolved in 2008 and Brain Tumour Alliance Australia (BTAA) was created to fill the gap). There was little or no money available for brain tumour support and advocacy in those days. Denis approached the Grbavacs, who he had known through his connection with the local Croatian community, and Lily sent Ivan to their garage to retrieve a large jar into which all their small change had been deposited over the years. The contents of this jar produced enough funds to pay for the printing of a promotional brochure. n
From the January 2014 IBTA E-News Fraud: A UK man defrauded his own family and friends of thousands of pounds pretending that he had a brain tumour after going on the Internet and self-diagnosing his headaches to be a brain tumour. His brother unwittingly climbed peaks around the UK for a fund-raising effort. The fraudster shaved his head and eyebrows and claimed it was a result of chemotherapy. He was exposed when his worried family told his GP they feared he was about to die and the doctor said he was not receiving any treatment. n
Brain Trekking in Hong Kong By Dr Danny Chan Otto Wong Brain Tumour Centre, Chinese University of Hong Kong
中大「腦前行2013」 2013是蒙福的一年，特別《腦前行》 活動一年一年往前走，我們看見為惡 性膠質瘤患者 推動的護理標準漸得落實。今年4 月，化療藥物「替莫唑胺」﹣即腦腫 瘤患者的標準治 療﹣終全面獲納入香港醫院管理局撒 瑪利亞基金計劃；另外，自2007年《 腦前行》首次 舉辦開始，參加者由170人增至去年 超過300人，今年我們再次打破紀 錄，獲得400多人 支持，大家浩浩蕩蕩圍繞山頂步行， 不單為國際腦腫瘤聯盟（IBTA）傳遞 「為腦腫瘤環 遊世界」的訊息，亦為香港累計步行 里數共約8,850公里，讓我們自2007 年，一直保持 亞洲之首，捐出步行里數。 然而今年讓人印象最深刻的並非外在 的出席率，而是你們的愛心和堅持。 活動前一天還 雷雨交加，我們甚至啟動了應急計 劃，發出惡劣天氣應變通知、取出雨 衣，為支持腦腫 瘤患者的機會切切祈求。許多《腦前 行》參加者通過電子郵件和電話，顯 明不管天氣如 何惡劣也要步行的決心。我們備受感 動和鼓勵，並獲得及時提醒！這正是 《腦前行》活 動的精神：無論是晴是雨，我們跟病 患者及家屬一起走出活著的意義。各 位《腦前行》 支持者，我們真的為你而自豪。 在此祝願大家一個福氣滿溢的2013 年；2014年《腦前行》再約定你。
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2013 was a blessed year. Brain Trekking accomplished its major mission [in Hong Kong] - securing the standard of care for patients with malignant glioma. By April 2013, chemotherapy with temozolomide, which is the standard of care for brain tumour patients, was fully covered [at the Chinese Hospital of Hong Kong] under the Samaritan Fund scheme of the Hospital Authority.
Since our first event in 2007, the number of Brain Trekkers has been growing from 170 in the beginning to over 300 last year. We broke the record again this year by having more than 400 participants trekking around Hong Kong’s famous The Peak. It also means that Hong Kong has accumulated a total mileage of 8850km in [symbolic] donations for “Walk Around the World for Brain Tumours”, organised by the International Brain Tumour Alliance (IBTA). We have been the leading donor in Asia since 2007. The turnout rate of Brain Trekkers in 2013 was impressive and [the event] was held despite thunderstorms the day before. Two days before the event, we even initiated a contingency plan, issuing bad weather advice, taking out raincoats, and praying. We were moved and encouraged by many Brain Trekkers who pledged through e-mails and phone calls that they would join the walk regardless of the weather. What a timely reminder it was! It is indeed the spirit of Brain Trekking: we walk with the patients and their families in the good days and the bad days. We are really proud of you, Brain Trekkers. n
Progress Against Medulloblastoma …a timeline through the decades Content researched by and supplied to Brain Tumour magazine by Dr Vijay Ramaswamy and Dr Eric Bouffet, The Hospital for Sick Children (SickKids), Toronto, Canada; original timeline design by Edwina Kelly (edwina@edwinakellydesign.co.uk)
EACH year medulloblastoma affects five children in every one million. This timeline illustrates the most important breakthroughs and advances in the knowledge and management of medulloblastoma, one of the most common malignant brain tumours in children. With recent advances in molecular and genomic technologies, the landscape of medulloblastoma is changing. We can expect the treatment 1920s: First attempt at x-ray therapy (roentgen of this disease to see further therapy) by Percival Bailey and Harvey Cushing. important changes in the They found that a subset of patients at autopsy next decades. in fact had no evidence of medulloblastoma, rather radiation necrosis. Led other groups to The IBTA gratefully explore radiation therapy as a treatment acknowledges Dr Vijay after surgery. Ramaswamy and Dr Eric Bouffet (both at SickKids Hospital in Toronto, Canada) 1950s: First comprehensive study of for their advice about the craniospinal irradiation for medulloblastoma leading to three-year survival of over 50%. This contents and to Edwina Kelly showed for the first time that a combination of (IBTA’s graphic designer) for surgery and craniospinal irradiation could lead to the illustrative representation cure and that medulloblastoma was not of this timeline. n necessarily a fatal disease.
2011-12: Multiple genomic and next-generation sequencing studies reveal that medulloblastoma is a heterogeneous tumour comprising at least four distinct molecular variants (WNT, SHH, Group 3, Group 4). This provides an impetus for future research aiming at better outcomes with less toxicity to the developing brain. 2012: Results of the SIOP-PNET4 randomised study that assessed the role of hyperfractionated craniospinal radiation (HFRT). In this trial, HFRT was not superior to standard radiation, which therefore remains standard of care in medulloblastoma.
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1920s: Harvey Cushing described medulloblastoma and performed the initial surgeries. It was realized very quickly that after surgery, the tumour returns in all cases.
1969: Staging system proposed by C.H. Chang. This staging system was developed in the pre-CT scan era and is based on size and invasiveness of the tumour at surgery (T stage) and evidence of spread outside the posterior fossa (M stage). 1970s: First International Society of Paediatric Oncology (SIOP) and Children’s Cancer Study Group (CCG) randomised trials with similar design (radiation +/- chemotherapy) that suggest a benefit for chemotherapy in a subset of patients.
Information contained in this Medulloblastoma Timeline should in no way be taken as a substitute for medical care, advice or professional services. For medical care and advice, a doctor should always be consulted. See also http://www.theibta.org for additional details of our disclaimer. The IBTA cannot take responsibility for the content and/or accuracy of this timeline. Š 2014 International Brain Tumour Alliance (IBTA). This timeline should not be reproduced without permission of the IBTA. Enquiries chair@theibta.org
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BETHYD - the Turkish Brain Tumour Patient and Caregivers’ Association: supporting brain tumour patients across continents* * Turkey is geographically located at the intersection of the two continents of Europe and Asia
By Nihat Karaoglu President BETHYD, Beyintumoru
THE first brain tumour patient support group in Turkey started humbly in 2009 with a few volunteers after our initial frustration and struggle with the condition. Since then our group has reached all over the country having more than 750 active members nationwide. Members of our group consist of brain tumor patients, current and former caregivers, their families and friends. We also receive generous support from various professionals who play an important part in the treatment process. Our group runs a website at www. beyintumoru.org which receives more than ten thousand visitors a month, dedicated to educating and informing brain tumour patients, caregivers and the general public. Recently, we discovered that one of the articles we published last year has been shared over one million times. We all have our private lives, our work and our treatments to deal with, but we try to get together at least once a year with other members. We held our annual meeting on the 5th of January this year. During this year’s meeting we decided unanimously to set up a nongovernmental organisation (NGO) to represent and defend brain tumour patients’ rights. Our initial focus was on educating patients and caregivers and we worked on ensuring solidarity among them but now we will go one step further to represent patients and caregivers. It is indeed a great necessity to represent and defend patients’ rights where all the other parties involved in the treatment process, pharmaceutical companies, insurance companies, medical professionals and government have bodies to protect and defend their own interests. 60
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Above: The Management Board of the Turkish Brain Tumour Patient and Caregivers Association. Members are joined by Y.Tanrikulu , a 12 year GBM survivor (fourth from the left), and President of the Board, Nihat Karaoglu (third from the right)
Until now, brain tumour patients in Turkey were fighting with the disease on one side and also trying to defend their rights as individuals at the same time. We need to support patients and caregivers and get them involved in decision- and policy-making processes and help them in their struggle with the system as well as their fight with the disease. The new NGO founded under the name Brain Tumor Patients and Caregivers’ Association of Turkey (in Turkish – Beyin Tümörü Hasta ve Yakınları Derneg˘i) will help us effectively fill this gap. Our policy is to only admit patients or caregivers as members to ensure that our organisation is truly patient-centric all the time. The NGO has a legal service, which can provide legal advice for disputes or even represent the patient and their families during a legal process.
We also have set up a social services unit. This unit will take care of patients’ day-to-day problems. Our case workers will help resolve these problems, visit the patients in treatment and also follow up a patient’s case with the doctors. When something unexpected happens you always need a helping hand. What to do? Which specialist to see? Am I receiving the right treatment? How to make a decision? So far this has been quite useful. On several occasions we were made aware that the patient was not prescribed seizure medication or medication against edema which were needed so we helped to remedy that situation. We have ad-hoc groups following each other’s treatment process and visiting patients. We also plan to support patients with their treatment process. As you know brain tumour patients require frequent blood tests or MRIs which can be costly. We will act on behalf of the patients to get these services provided
more cheaply from institutions. Our dream would be to purchase our own non-profit MRI centre or even a holistic treatment centre. But at the moment that’s just a twinkle in our eyes. Our biggest hurdle is the lack of time because we all have to deal with our personal life, work and the illness itself, while trying to help others. Perhaps with some funds we would be able to hire professionals instead of volunteers to take some of the workload. We are hopeful and very motivated. I wish our story to inspire and encourage readers of this magazine to do more, because the stories we have read here of other organisations have certainly inspired and encouraged us. n
From the October 2013 IBTA E-News A cardiologist with a GBM: A retired cardiologist with 35 years of practice behind him has written an interesting story in the Washington Post newspaper about his experiences after being diagnosed with a GBM. In undertaking his own research he discovered that 22,000 scientific articles had been written on GBM over the past 40 years. He also found that another cardiologist had collected data on 23 invasive (interventional) radiologists
and cardiologists who had developed tumors, of which 17 were GBMs on the left side of the brain (similar to his own situation). He has experienced apparent success from an experimental protocol at Duke University which involved the introduction of a modified polio virus into his brain. In what could be a useful “promotional” tip for radiation therapists he likened the plastic mask he wore during treatment as being “like an Olympic fencing mask”. n
The greatest individual mileage contributor to the IBTA’s Walk Around the World for Brain Tumours PETER Bennett from Brisbane, Australia, is what they call a “Centurion” in the racewalking world i.e. those who walk 100 miles in under twenty-four hours. In 2013 Peter completed three Centurion walks, bringing his total to eighteen during his walking career. IBTA Chair Denis Strangman knew of Peter when Denis was a racewalk judge and track and field coach in Australia. When the IBTA’s Walk Around the World for Brain Tumours was launched Peter was an enthusiastic supporter. Denis’ late wife Margaret, who died from a GBM, had also been a racewalk judge and was well known in the Australian racewalking community. Peter takes up the story about his achievements during 2013… He said: “I was invited to race in Rouen, France, by L’association des Amis de l’Océan Indien (Friends of the Indian Ocean) on June 8-9th, 2013 for the annual 24 Heures de Rouen ultra-distance walking classic. “Besides all the ultra-walkers the field also included a number of walkers from La Fédération Française des Diabétiques (Diabetics Association of France). The race started at 5pm on the Saturday and 61
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Above: Centurion racewalker Peter Bennett (Australia) wearing his cap promoting the IBTA. Photo courtesy VRWC.org.au.
because of the long summer days it was daylight until 10pm! It made for a short night and the Sunday was a long and hot day as fatigue set in. “Besides the Rouen, France, 24 hour race last year, I competed in the National 48-Hour Championships in Caboolture, Queensland (Australia), covering 272.112 km and the Australian Centurion walk in Melbourne with 185.199km.
“In February of 2013 and this year I competed in the Caboolture 12 hours walk covering 97.096km and 107.100km respectively. “I would like to ‘donate’ all these kilometres to the Walk Around the World…” In addition, Peter completed these walks, the mileage for which he has also donated to the Walk Around the World for Brain Tumours. n 9-10 Feb 2013 - 97.096km (12:00:00 hours) - Caboolture, Australia Dusk to Dawn 12 Hour Walk n 8-9 June 2013 - 213.00km (24:00:00) Rouen, France 45th 24 Hours of Rouen n 19-21 July 2013 - 272.112km (48:00.00) - Caboolture, Australia. National 48 hour Run Championships n 14-15 Sept 2013 - 185.199km (24:00:00) - Melbourne, Australia. Centurion 24 Hour Championships n 8-9 Feb 2014 - 107.100km (12:00:00) - Caboolture, Australia. Dusk to Dawn 12 Hour Walk We are very grateful to Peter for the donation of these walked distances, which add up to over 874 kms, and we will certainly include them in our annual totals. We also thank Peter for wearing a cap promoting the IBTA. n
Argentinian oncologist Max Barros on the little brother who inspired him, the country which nurtured him and the brain tumour Summit which surprised him By José Máximo Barros, MD Clinical Oncologist, Buenos Aires, Argentina.
I
was in the last year of secondary school when my youngest brother Octavio, who was one and a half years old, was operated on for a brain tumour. After that came the diagnosis of medulloblastoma. Octavio endured chemotherapy and autologous stem cell transplantation for a year and a half. He had a complete remission but a few months later the tumour relapsed in the brain and spine. My parents chose not to pursue radiation and the oncologist accepted their decision because of the irreversible damage it might cause. I was in the first term at medical school when Octavio passed away in peace. My experience of Octavio’s brain tumour probably influenced my choice of career. I was very enthusiastic about cancer and in the middle of my studies I had already decided to do oncology - not because I thought I could be the best, but because I was convinced that I could help the patient and his family to walk the difficult path through the cancer journey.
My work with brain tumour patients I started my residency in radiation oncology at Vidt Centro Medico, Buenos Aires University and after three intense years and a thesis in adult medulloblastoma I continued with medical oncology for three more years at Argentinian Catholic University, with my final work being in glioblastoma. I wrote my first paper about brain metastasis as a second-year resident and presented my work about adults with medulloblastoma as a poster at the ASTRO (American Society of Radiation Oncology) annual meeting in 2011. I presented the 62
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Other activities
Above: Dr Max Barros from Buenos Aires, Argentina, speaking at the IBTA’s First World Summit of Brain Tumour Patient Advocates held near San Francisco in November 2013. Photo © Paolo Salcido (www. salcidoarts.com) reprinted with permission
complete data with long term follow up, as an oral presentation, last year in Cartagena de Indias, Colombia, at the ALATRO (Asociacion Latinoamericana de Terapia Radiante Oncologica) biannual meeting. Now I work at Vidt Centro Medico as part of the Hospital Universitario Austral and at the Hospital Güemes with a special interest in brain tumour patients. I really want to acknowledge and thank Dr Eduardo Barrios (who passed away in 2012) and Dra Blanca Diez, one of the leaders in neurooncology in Argentina, because from the beginning of my career they were my mentors and introduced me to the brain tumour world and let me work together with them.
Since 2007, I have actively participated in the chapter of neurooncology of the Argentine Society of Cancerology (SAC), with Dra Alejandra Rabadan as President of that chapter. Dra Rabadan organizes and supports annual interdisciplinary activities involving neurosurgeons, radiation oncologists, medical oncologists, radiologists and basic scientists. These activities include an annual course in neurooncology, participation in international congresses, symposiums and meetings, etc. SAC joined the International Brain Tumour Alliance (IBTA) in 2012 and as a result we held the second “Brain Tumour Awareness Day” which took place on October 24th, 2013 in Buenos Aires. Last year, Denis Strangman (IBTA Chair and Co-Director) and Kathy Oliver (IBTA Co-Director) invited me to participate in the “First World Summit of Brain Tumour Patient Advocates”, organised by the IBTA in Lafayette, California, during November 2013. There, I encountered an extraordinary experience with patients, caregivers and physicians from all parts of the world. I was very surprised when I heard that we in Argentina share some of the same problems in Denmark, Zimbabwe and Argentina when it comes to brain tumour patients.
Challenges with statistics and maintaining a brain tumour registry Collecting statistics and maintaining a registry is one of those problems. Argentina lacks regional statistics in cancer. In 2000, a group of pediatricians and the Kaleidos Foundation started the
The Argentine Interhospitals Neurooncological Registry (ROHAN) was first initiated in 2012 under the leardership of Dra Mercedes Garcia Lombardi. It includes the reporting of all malignant brain tumours diagnosed from January 2012 in patients older than fifteen years and is completed on line by the treating physician. Many institutions joined ROHAN and we believe that in the short term we could have information about the real situation of brain tumours in Argentina, so we can better direct our efforts and resources.
Fond memories of the IBTA Summit
Above: A photograph of the Barros family from some years ago. Little Octavio, who passed away from a brain tumour, is pictured sitting on his mother’s lap (front row, second from left)
first registry for cancer patients under fifteen years old. It is called El Registro Oncopediátrico Hospitalario Argentino (ROHA). Since 2010, ROHA has been part of the recently created Argentinian National Cancer Institute (INC). The INC
initiated different programs for some tumours (breast cancer, colorectal cancer, cervix, skin and prostate cancer). Given the low prevalence of brain tumours, these are not part of the official programs of epidemiological surveillance in Argentina.
Brain Tumors Research Association
To support
neuro-oncological research The Association’s main goals are to improve basic, translational, and clinical research in the field of brain tumors and to support hospital services.
To act specifically The ARTC deals mainly with primary brain tumors. Research laboratories and clinical Departments are supported directly and through fellowship grants. A particular attention is paid to research on quality of life issues. Moreover, ARTC recently developed a program to support neurooncology training and care in Frenchspeaking Western Africa.
a.r.t.c@free.fr Association pour la Recherche sur les Tumeurs Cérébrales Groupe Hospitalier Pitié Salpêtrière Fédération de Neurologie – Mazarin 47, Boulevard de l’Hôpital 75013 PARIS
www.artc.asso.fr 63
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Writing these lines I have just remembered those days in Lafayette at the IBTA Summit with extraordinary people thinking together and sharing experiences about how to help brain tumour patients. I really thank Denis and Kathy at the IBTA for the great effort they made to make this Summit possible. It was very empowering to see that those having lost a loved one or suffering from a brain tumour are fighting for the cause. n
Glucose and brain tumours By Dr Minh Thi Tieu and Dr Caroline Chung Princess Margaret Cancer Centre, Toronto, Canada
THERE has been a growing interest in the relationship between high blood glucose levels and cancer. Large studies have suggested that patients who have diabetes have a higher risk of developing cancers including liver, pancreas, breast and colon cancer. It has also been suggested that patients with diabetes who develop cancer tend to have shorter life expectancies than patients without diabetes. Although this was initially thought to be associated with diabetesrelated complications during their cancer care, subsequent studies have observed that patients with brain and breast cancer had worse survival if they had higher blood glucose levels, irrespective of a prior diagnosis of diabetes. Based on these observations, it is unclear whether high blood glucose directly causes the growth of cancer. Ongoing research has been directed at investigating possible reasons to explain these findings, and if interventions to control diabetes and high blood glucose will improve cancer outcomes.
Glucose and glioblastoma Glioblastoma is an aggressive brain tumor associated with a limited life expectancy. Patients with glioblastoma frequently have high blood glucose levels due to corticosteroid medications they need to take in order to control swelling around the tumor. One of the unwanted side effects of corticosteroids is that these medications can raise blood glucose levels by altering the effect of insulin, which is an important hormone in the control of blood glucose levels. A number of possible mechanisms have been proposed to explain the association between high blood glucose levels and poorer life expectancy in patients with glioblastoma. (1) High glucose levels may directly promote tumor growth. Laboratory 64
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Above: Dr Minh Thi Tieu stands in front of her poster on the subject of this article that was displayed at the European Cancer Conference at Amsterdam in September 2013.
â&#x20AC;&#x153;Frequently patients ask if we recommend any special diet to aid in their cancer management. We encourage patients to maintain a healthy diet and do not support diets that aim to severely restrict glucose intake.â&#x20AC;? Dr Minh Thi Tieu and Dr Caroline Chung
experiments have demonstrated that glioblastoma tumors depend heavily on glucose for growth such that withdrawal of glucose from glioblastoma cells result in cell death â&#x20AC;&#x201C; a finding that is not seen in the normal brain cells. The dependence on glucose can
be explained in part by what is known as the Warburg effect, first described by Nobel prize winner Otto Warburg in 1956. The Warburg effect describes the tendency of cancer cells to preferentially produce energy through a mechanism called anaerobic glycolysis, which requires more glucose in order to make the same amount of energy for the tumor cells to survive. (2) Insulin resistance and high insulin levels. Patients with type 2 diabetes are known to have higher insulin resistance and require higher levels of insulin to control their blood sugars. Hence, patients who are type 2 diabetic or take corticosteroid medication, which increases insulin resistance, can have higher levels of circulating insulin. As insulin belongs to a family of growth factors, higher levels of insulin may stimulate tumor cells to grow and divide. (3) Patients with diabetes and high glucose levels may have generally worse health. For example, diabetics are known to be at risk of many chronic health conditions including heart disease and stroke. Significantly elevated blood sugars can also increase the risk of infection, dehydration and complications of these conditions. These factors can also contribute to the overall poorer survival in patients with diabetes receiving treatment for cancer.
Our Research and Future Directions Our research group involves radiation oncology, neurooncology, endocrinology and allied health staff at the Princess Margaret Cancer Centre and Mt Sinai Hospital in Toronto, Canada. We have recently completed a study that looked at the impact of glucose on survival outcomes in glioblastoma patients who were treated with both radiotherapy and chemotherapy (temozolomide)
following surgery, which is the current standard treatment for these patients. We found that blood glucose levels during their initial treatment period up to four weeks after completing radiation was associated with overall survival. Our results are consistent with published studies and provide further evidence to support research to investigate whether the treatment of high blood sugars will improve survival in these patients.
“While studies have shown an association with blood glucose and survival in glioblastoma patients, it is unknown if treatment to lower blood glucose will result in better survival. Currently we would not recommend any change in the management of blood glucose in Glioblastoma patients either with diet or medication until more supportive evidence becomes available.” Dr Minh Thi Tieu and Dr Caroline Chung
One of the interesting findings of our study was that the blood glucose level above which survival became poorer, was within the normal range of blood glucose. This blood glucose level was lower than the glucose levels we currently consider acceptable in patients during their course of treatment for glioblastoma. Our results have aided in the development of a small pilot study to assess the feasibility of closely monitoring and controlling blood glucose with modern anti-diabetic management tools in patients with glioblastoma during their course of treatment. Recent findings have motivated further investigation of the association between 65
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blood glucose levels and survival in patients with glioblastoma. While this research is promising, current data is insufficient to warrant any change in the way blood sugars are managed in glioblastoma patients. It is not yet known whether interventions to reduce blood sugars with either medication or diet, will result in better tumor control or survival. Frequently patients ask if we recommend any special diet to aid in their cancer management. We encourage patients to maintain a healthy diet and do not support diets that aim to severely
restrict glucose intake. Although there is no current standardized approach for monitoring and managing blood glucose levels in these patients, a screening and management protocol has been instituted to prevent excessively high glucose levels at our institution, in order to prevent hospital admissions or complications. If glucose levels are unacceptably high, treatment to control glucose levels could include dietician review to ensure a balanced healthy diet, glucose lowering drugs (such as metformin) or medical review with an endocrinologist. n
Heading for a Cure! Emily Fuhrman of Head for the Cure advised the IBTA that in 2013, they had a total of 11,564 participants in nine different Head for the Cure 5K runs/walks around the United States. Head for the Cure donated to the IBTA a whopping 57,820kms towards the “Walk Around the World for Brain Tumours” total. Event locations included Kansas City, North Texas, Wichita, Central Texas, St. Louis, Houston and Tulsa. Funds raised from Head for the Cure events go towards the Brain Tumor Trials Collaborative (BTTC). Their ultimate goal is to find a cure for high-grade gliomas. The BTTC develops clinical trials in the hopes of finding better brain tumour treatments while keeping patients’ wellbeing in mind. This collaborative group, led by Dr. Mark Gilbert and MD Anderson Cancer Center, has over 20 institutions working together to find a cure. Fifteen US cities are hosting Head for the Cure 5K events in 2014 Please see www.headforthecure. org for more information. n Above right: Participants in one of the nine Head for a Cure 5K events which
Above: The Wall of Hope at one of the Head
take place in various US locations.
for the Cure walks
Brain Tumour Society (Singapore) - a seed grown from the IBTA World Summit by Melissa Lim President, Brain Tumour Society (Singapore)
H
earing from fellow advocates about the work they have done in their respective countries, during the IBTA First World Summit of Brain Tumour Patient Advocators in San Francisco from 18th to 20th November 2013, truly opened my eyes to the possibilities of what we can do in Singapore for our brain tumour patients and caregivers. When I shared these insights with my group in January 2014, the members suggested that our group needed to become an official Society in order to undertake some of the plans I had in mind. This initially seemed like a daunting project for me. In the past ten years as a member of the informal Brain Tumour Support Group (BTSG) in Singapore, I knew that securing consistent attendance at meetings was hard. In addition, although BTSG had met since 2004 on a monthly basis at a hospital venue, we were inadvertently disbanded when this venue was no longer available in 2010. Without formal leadership and a meeting venue, the closer members of BTSG maintained personal contact to continue supporting each other. Once in a long while, we would have a gathering to reconnect and catch up. We did not have a website or Facebook profile, nor any scheduled meetings or venue. What we had was our Yahoo Group, which mainly broadcasted the IBTA eNews which we have been receiving from Denis Strangman, IBTA Chair and Co-Director, who had 66
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Above: Supporters celebrate the establishment of Brain Tumour Society (Singapore). Melissa Lim, the author of this article is pictured in the white dress in the middle of the photograph.
made contact with our group on a prior visit. Occasionally, some of us would rally together to offer support to BT patients and caregivers who came to our group through others or from their Internet research.
A new chapter begins in Singapore In December 2012, I decided to take up independent leadership of the group and tried to secure venue support from a hospital for BTSG’s meetings to facilitate the 2013 objectives of befriending and patient education. It was a big morale booster for me when an Assistant Director of Nursing at Singapore General Hospital (SGH) offered a meeting venue at the Neurosurgery Ward. We met in SGH for the first time in July 2013, and were delighted that a couple of nurses from SGH neurosurgery came on board to also support us in the administrative and logistics aspects of our meetings.
In 2013, we held our other three meetings in June, August and September at members’ homes since our group members were familiar to each other and preferred the more homely settings. Our group reconnected with Denis Strangman during his day trip to Singapore in July 2013, and it was through Denis’ gentle yet persistent persuasion that I agreed to attend the First World Summit of Brain Tumour Patient Advocates (which attracted over 60 participants from 20 countries) - a trip that eventually led me to submit an application for the registration of Brain Tumour Society (Singapore) otherwise known as “BTS” on 28 January 2014. Through the senior nurses in BTS, we secured a medical advisory panel for BTS comprising two respected neurosurgeons and one neuro-oncologist. Meanwhile, two newspaper articles which featured my own
brain tumour story and work led several members of the public to our group.
Good news!
Above: Some of the members of the newly-established Brain Tumour Society (Singapore)
We received the good news of the approval for the establishment of BTS on 5 March 2014 and celebrated this momentous event on 8 March with two events: a walk to announce and publicise our newly formed society during a Walkathon organised by our fund raising sponsors, Lions Club Nanyang and a meeting cum celebration at our SGH venue with a birthday cake and a sumptuous lunch. On 4 April 2014, BTS launched our maiden fund-raising event at a Charity Dinner hosted by our Lions Club Nanyang. In addition, we will participate in the International Society of Pediatric Oncologyâ&#x20AC;&#x2122;s (ISPNO) conference which will be held in June in Singapore. A BTS public awareness and fund raising event will be held in October 2014 in conjunction with the IBTAâ&#x20AC;&#x2122;s International Brain Tumour Awareness Week (26 October to 1 November 2014). n
WWW.STOPBRAINTUMORS.ORG
THE DUTCH BRAIN TUMOR FOUNDATION
Raising awareness and money for brain tumor research
Hoofdstraat 88 | 3972 LC Driebergen | The Netherlands
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To the end of the earth for Ronnie By Niall Roche Brain Tumour Ireland
IT is 7am on the 25th of April 2013. I’m standing in the archway under an impressive stone clock tower. Ahead of me, across a small bridge, runs a steep cobbled street towards the edge of town and leading up to the mountains. The morning air is cool but the day will be hot. Combined with an ascent of over 1200 m it’s going to be a tough day. Everything I need is stuffed into my backpack: sleeping bag, clothes, water, food. Carrying this extra 7 kg won’t make it any easier but it’s necessary to attempt this unsupported. Ahead of me lies a combination of forest trail, mountain track and paved road spanning three mountain ranges. My final destination is a white, cliff-top lighthouse on a rocky peninsula on the west coast of Spain; I take a picture and then I start my 908 km (564 mile) run from St. Jean-Pieddu-Port, France to Finisterre, Spain.
I
had always thought I would take Mom on a holiday just to say thanks for everything she had done for me over the years. Since I’m not really much of a shopper or a spa weekend kind of guy I thought a few days walking the Camino in Spain might be something we would both enjoy and would be a good way to spend some time together; walking and chatting. The Camino de Santiago is a collection of ancient pilgrim routes which cross Europe and come together at the tomb of St James in north-west Spain, Santiago de Compostela to be exact. But you always think you have all the time in the world and as too often occurs, life got in the way, the holiday never happened and time unfortunately ran out for Mom.
Above: Niall Roche of Brain Tumour Ireland running though the streets of Santiago, Spain, on
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A son’s amazing tribute
15th May 2013, with three days of running left
My mother, Ronnie Fehily, an otherwise healthy 62 year old, was diagnosed with a grade 4 brain tumour (a glioblastoma or “GBM”) and sadly passed away in January 2012. So in tribute to her strength and determined spirit, I decided to run all 908 km of the Camino past Santiago to the Spanish coast. The idea was to really put myself through a difficult challenge to raise awareness of brain tumours in Ireland and much needed funding for the charity we established after Mom died, Brain Tumour Ireland. The vast distance of 908 km meant I would be covering the equivalent of 22 marathons in three weeks! Prior to this I
to Finisterre.
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had never even run a marathon. My final destination was Finisterre, the name for which derives from Latin and means “the end of the earth”. So the challenge was called “To the End of the Earth for Ronnie and Brain Tumour Ireland”.
The challenge begins I began my journey in late April 2013. Up to day four everything was going smoothly. I had run over 200 km at this stage but then it all started to slowly fall apart, quite literally. I had lost several toenails on each foot and had severe blistering across multiple toes, heels and the balls of my
feet. Each morning I would spend half an hour taping my feet and in the evenings another half an hour to clean and treat any new wounds. By day eight I had chronic tendonitis in my lower legs which pained even when walking. Disaster! This was most certainly due to inexperience, the rough terrain and the too-little rest allowed by daily running. However this did not compare to the fight and struggle my mother faced throughout her illness and it was through constant remembrance of Mom’s determined spirit that I was able to continue running. It was physically and mentally demanding to get up and run every morning but the Camino seems to bring something out in people to dig deep and keep going. There is a certain camaraderie to be found along the Camino which really lifts your spirits, whether inspired by a 70-year-old man cycling up the hills to stay fit for his grandkids, or a school tour of children cheering you on as you go by.
To the end of the earth The path to Finisterre beyond Santiago was a different journey. The weather had changed and there were few pilgrims along the track. Every kilometre was tough and it would not be over until I reached that lighthouse in Finisterre. Despite the challenges and injuries, I was pushed along by tremendous support back home. Thankfully, with the help of several physiotherapy sessions, pre and post leg massages, some painkillers and
sheer foolish determination I made it to the finish line - 22 marathons to the end of the earth for Ronnie and Brain Tumour Ireland!
The ultimate goal
The Italian Corri al massimo per Irene
It was an incredibly tough three weeks, full of highs and lows but there was an overwhelming sense of relief to finally reach Finisterre with literally nowhere left to run. I knew it wasn’t going to be easy but it was definitely worth it. Although the Camino was a personal achievement, the real success was the amount of awareness generated for Brain Tumour Ireland through the outstanding support from everyone back home. n
Brain Tumour Ireland was set up during International Brain Tumour Awareness Week in November 2012 in memory of Ronnie Fehily an otherwise healthy 62 year old, who was diagnosed with a grade 4 brain tumour (glioblastoma or “GBM”) and sadly passed away in January 2012. For further information see www.braintumourireland.com/bti/
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Above: And they’re off! Participants in the Corri al massimo per Irene which took place in Rome, Italy
DR Andrea Pace from the Istituto Tumori Regina Elena (Rome) advised that on Saturday 26 October 2013, during the International Brain Tumour Awareness Week, one of the IBTA supporting organisations, IRENE Onlus, organised
the 5th Corri al massimo per Irene run in the Park Villa Pamphili in Rome. Dr Pace reported that more than 200 people (patients, families, children and runners) participated in the 5km run/walk. n
20.03.2014 13:44:56
Helping others while sharing my passion for creativity By Kristin Odom, Houston, Texas, USA KRISTIN Odom lives in Houston, Texas (USA). She is a Publications/ Communications Coordinator for the Society for Neuro-Oncology (SNO), the Collaborative Ependymoma Research Network (CERN) Foundation and the Brain Tumor Trials Collaborative (BTTC). Here, she tells Brain Tumour magazine how her experiences have led her to her lifeâ&#x20AC;&#x2122;s work. AFTER working with numerous brain tumor organizations, I have realized that most people involved have a personal tie to cancer. Unfortunately, I am no different. I graduated from Louisiana Tech University in 2003, earning a Bachelor of Arts degree in graphic design. After graduating, I got married and got my first job at a Louisiana newspaper. I managed the composing department and was responsible for page layout and design. In 2008, I had my daughter and three years later, my son. Then, I switched jobs
Above: Twins Melissa (left) and Kristin (right)
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Above: Kristin Odom and her family
to a marketing position at a local agency. There, I designed brochures, billboards and logos. At this point, I planned on staying in Louisiana until I retired. Then, everything changed. On August 5, 2011, the day before our 30th birthday, my twin sister, Melissa, had
surgery to remove an eight-centimeter uterine mass. The mass was cancerous and it had spread to many other areas. It took almost six weeks to determine the type of cancer. The final pathology report called it a pseudopapillary neoplasm (usually found in the pancreas) with epithelioid features. There are only four recorded cases of this particular kind of cancer. They expected her to live one to five years. Despite this news, we were hopeful. I drove to Houston every weekend to be with Melissa. Finally, I decided to move closer to her. If I had one year left with my sister, I wanted to spend all the time I could with her. My husband, two kids and I moved to Houston to live temporarily with my parents. I began my new job, caring for Melissa. We met with her doctor at MD Anderson Cancer Center in mid-September and found out that all of her remaining tumor spots had grown significantly in one month. Her doctor told us the outcome looked grim. Melissa would not give up. She started an aggressive chemotherapy regimen. Every day I would go to her house and we would spend time together. After just one round of chemotherapy, her condition deteriorated and she passed away on November 3, 2011 â&#x20AC;&#x201C; within three months of her surgery, and only four months after her first symptoms. After Melissa passed, my husband and I were undecided if we should stay in Houston or return to Louisiana. My mother did not want me to move back. She works in the Neuro-Oncology department at MD Anderson and felt there was an opportunity for me there too. This made me rethink my career path. At the same time, Dr. Mark Gilbert, Deputy Chair of the Department of Neuro-Oncology, was looking for a
Above: SNO Staff: Jan Esenwein, Linda Greer,
Above: CERN Members: Kim Wallgren, Elizabeth
Above: Kristin and Matt Anthony, “Head for the
Chas Haynes, Megan Bell, Kristin Odom
Vera-Bolaños, Terri Armstrong, Kristin Odom, Alvina
Cure” President
Acquaye
communications specialist for the Society for Neuro-Oncology (SNO), the Collaborative Ependymoma Research Network (CERN) and the Brain Tumor Trials Collaborative (BTTC). The job matched my expertise and for me, was the perfect combination – helping others while sharing my passion for creativity and design.
The Society for Neuro-Oncology (SNO): www.soc-neuro-onc.org For SNO, I update the Twitter page, and design and layout various flyers. This includes the meeting packet for the Annual SNO Scientific Meeting and Education Day. SNO is continually growing and I credit my fellow SNO staff: Chas Haynes, Jan Esenwein, Linda Greer and Megan Bell.
The Collaborative Ependymoma Research Network (CERN) Foundation: www.cern-foundation.org For CERN, I reach out to the ependymoma community through social media avenues such as Facebook and Twitter, and the website where I work on content and design, and newsletters. I also help with fundraising events like Ependymoma Awareness Day held annually in April. I recently designed and completed, with the guidance of our experts, a free ependymoma guide for patients, caregivers and advocates. The passion and strength that the CERN Foundation exhibits to find a cure for ependymoma makes me proud to be part of such an incredible and unique effort.
The Brain Tumor Trials Collaborative (BTTC): www.bttconline.org For BTTC, I update the Facebook page, 71
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website, and plan the annual BTTC meeting. I am honored to be part of this group. I also help organize the Head for the Cure (HFTC) 5K event in Houston held annually in October. HFTC was started by Matt Anthony, who lost his brother to glioblastoma, and the organisation raises funds for the BTTC. HFTC has numerous events throughout the U.S. (www.headforthecure.org).
With all of the organizations, I get to see firsthand what a tight knit group the brain tumor community is, as well as the family and caregivers. Everyone takes pride in what they’re doing and it is clear that this is much more than a job to them. Although my sister did not have brain cancer, I feel like my experience can help me relate to the brain tumor community and I am thankful I can honor Melissa’s legacy. n
Lost childhood memories SIXTY-eight year old Robert Hanson from Walkden in the United Kingdom has an unusual problem. He cannot remember about his childhood and blames this on a brain tumour that was removed in 1993. His granddaughter started asking him questions in 2005 about her heritage and his early days but he could not answer any of her questions. Robert’s brothers, who now live in Canada, have sent him copies of early photographs to help jog his memory. One brother, Arthur, has even written a dozen poems about his childhood and sent them to Robert in the hopes of reviving his memories. A local newspaper published a story about Robert’s situation and invited readers to contact him but he told Brain Tumour magazine that not much help was forthcoming after the article appeared. We are all aware of disappearing memories when we get older but usually it is the short-term memory that is affected.
Above: Robert Hanson cannot remember his childhood and blames this on a brain tumour
With the heavy use of Facebook and other social media applications these days will the Millennial Generation wish, in fifty years’ time, that some of the recorded excesses of their youth could be forgotten and not return to haunt them? n
ADVANCiNg rADiAtioN oNCology together
www.accuray.com accuray_itba-halfpage_2.indd 1
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3/21/12 8:06 AM
GFME 13 years GFME, Glioblastoma Fundation Michele Esnault, established in 2001 is a French-based (Marseille), patientoriented, support group involved in brain tumors. GFME translates and publishes in French scientific publications of Pubmed and ASCO on primary brain tumors. The association gives support, help, guidance on treatments and clinical trials for adults and children diagnosed with brain tumor. GFME works in partnership with ARTC, Brain Tumor Association For Research to rise funds. GFME is a website http://gfme.free.fr a quarterly magazine, a phone assistance (33) 04.91.64.55.86, and two mailing-lists (gfme@yahoogroupes.fr and astrocytomegfme@yahoogroupes.fr).The group includes 650 patients, care givers, friends and family members around the globe. For more details gfme@free.fr
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Captain McGale has a brain tumour By Lia Le Roy Werkgroep Hersentumoren vzw, Belgium
Above: Frank Boeye, aka “Captain McGale”, sailing to Norway in 1991
MY husband, Frank Boeye and I had sailed together a lot for about ten years: to Norway for three days and nights in stormy weather and high seas; around Great Britain crossing the North Sea in heavy storms; towards Bretagne in fine weather and to many other ports and places. We gave Frank the nickname of “Captain McGale”.
The end of one journey and the beginning of the next Each weekend, from March to November, we sailed on the Schelde River, from Antwerp (Belgium) to the river’s delta in the North Sea. There are heavy currents and a lot of boat traffic We liked struggling with the elements of nature: wind, rain, current, or just enjoying sailing during a fine sunny summer day. It felt like real life. An easy and basic life. In 1997, Frank, my young daughter Aster and I sailed along the north coast of France. We entered the port of Fécamp. A fishing boat had just came out of the lock. Frank was steering our boat Fralie, a 12 metres, two-masted sailing boat. He went straight into the direction of the fishing boat’s trailer. I grabbed the wheel and turned it, preventing 74
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Above: Lia and Frank Boeye’s beautiful black-hulled boat, Fralie, in the yacht harbor of Antwerp, Belgium
a collision. Fralie passed through the lock without further difficulties. A few days later, while we were in Dunkerque, a famous port on the northern coast of France, Frank had his first epileptic fit while setting Fralie’s main sail in the harbor. A week later he had a second seizure, while we sailed into the harbor of Breskens in southwestern Netherlands. I took the steering wheel. Frank was lying on the floor of Fralie’s cockpit, unconscious. I could hear him breathing. I quickly moored Fralie alongside another sailing ship and called for help.
Frank was hospitalized. It was the end of that sailing journey and the beginning of a new type of journey for us all. A few weeks later Frank was diagnosed with an astrocytoma. Some people advised me: “Just sell your boat”. I ignored it. Fralie was our real home.
Back in Fralie’s cockpit In November, after treatment for his brain tumour, Frank came back to our land home in Kapellen, Belgium. Visiting the boat was impossible for him. He slept day and night.
Above: The good ship Fralie in the harbor of Borkum - an island on the border of Germany
Frank had problems we could immediately drive home or to a hospital. We sailed one day and then Captain McGale (Frank) had to rest for at least three days. Aster and Jolien, both six years old at the time, were very content with rowing, fishing, and shelling. In August we returned with our boat to Antwerp. It was just the three of us this time - Frank, Aster and me. Captain McGale had recovered sufficiently to sail again. And once more I had confidence that Frank could take up his role of our captain.
Above: The River Schelde by Bath near Antwerp, Belgium.
and the Netherlands - during a storm
Never an idle moment with a boat In March of 1998 the weather was getting better. The temperature was rising. Captain McGale had recovered well by then. I thought it would be possible to get him on board the Fralie which I did. He felt so lucky sitting in the cockpit. From then on we went to our boat on each sunny day. We walked around the yacht harbor. At first it took more than an hour to walk less than one kilometer. Sometimes we stayed on board Fralie for the weekend. Frank dreamed of sailing. But first he needed to get stronger and his balance had to improve On the 5th of August 1998 we sailed with our friends Eric and Rita on the Schelde from Antwerp to Terneuzen in the Netherlands. Frank was steering for some time. Then he slept for three hours in the cabin while we sailed on. The next day we returned to Antwerp. Frank moored the boat. He was so lucky. He was still able to sail.
Peaceful, calm, easy… Sailing a small boat can be the slowest, most uncomfortable, and most expensive method of travel known to mankind. But the fact that small boats can be slow means that it worked well for Frank. He became slow too, due to the tumour. For him cycling was impossible, and car driving - oh no! He just couldn’t do that because the traffic is horrible. All those cars and bikes and pedestrians coming from all directions! Awful! Frightening! But sailing was peaceful, calm, easy . . . Autumn came. Winter came. Then spring and summer. Time to sail once again. During July 1999 we sailed along the Belgian coast with our friend Rudy and his daughter Jolien, who was the same age as our daughter, Aster. We arranged for a car to follow the boat from harbor to harbor. If 75
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If you have a boat, it’s not just sailing, there’s always work to do. There were some rust spots on the deck of the boat that had to be treated. When the weather was fine and I was at work Frank went to the boat after his physiotherapy sessions. He enjoyed sanding and painting the deck, little by little. Generally he worked for one hour and then slept for two hours. Our neighbor, Mon Midnight, was also working on his boat. Frank and Mon had long chats about the best painting system for steel boats, or just philosophizing about the meaning of life. Mon was also a cancer patient. He died some years later. When we were sailing, Frank stayed in the cockpit or the cabin. He had to because he still had balance problems. Aster and I were responsible for setting the sails, while Frank trimmed the sails from the cockpit. When mooring the boat, he did the steering while Aster and I jumped onto the pier and attached the ropes. Our roles were reversed.
Return to Dunkerque In July 2002 we sailed with our friends, Eric and Rita again, along the French coast and the eastern coast of England. Returning to Dunkerque was very emotional for us. There, it had all started. Each day we sailed for five or six hours. Frank slept for half the time while Aster and I managed the boat. No problem. In 2004 we made a trip to Germany and Sweden.
A memorable sail for Captain McGale We couldn’t sail by night anymore. It was too exhausting for Captain McGale. So we made day trips instead - except the 18th of August 2004.
Above: Frank Boeye painting the hull of his boat, Fralie
While sailing from Cuxhaven (Germany – River Elbe) to Borkum we ended up in a storm. Frank was in the cockpit. Steering was heavy. I was giving instructions about course and position to Captain McGale. He was steering like an automatic pilot. We entered the harbor of Borkum and tried to moor on a pier. Suddenly, the motor stopped. Aster and I could tie the boat to a pole in the middle of the harbor but it wouldn’t take long before the rope snapped. We called for the rescue services. They came alongside and brought us to the pier. By then it was 02:00 and 19th August. The next day Frank slept like a groundhog. He didn’t have problems due to the tumour. Captain McGale was waterproof. Unfortunately, Frank passed away in May 2012. But my daughter Aster and I have many, many happy memories of those days on board the Fralie with him. We still have Fralie and like to take her out on the water again or just stay on board in the harbor. n
Music speaks what cannot be expressed... By Alison Ware, Canberra, Australia IN a past edition of Brain Tumour magazine two years ago, we ran a short story about Australian harper Alison Ware. Here, Alison gives us an update on her innovative approach to help soothe the journey for brain tumour patients.
I
n 2012 I had the good fortune to be engaged by Brain Tumour Alliance Australia (BTAA) to provide a therapeutic harp service in both hospital and hospice care. My practice has since evolved, grown and developed. I am now working full time across five health care facilities and being supported by The Canberra Hospital Foundation and the Dry July campaign (an Australian and New Zealand initiative whereby people donate to support adult cancer patients instead of drinking alcohol). This is in direct response to my work with BTAA. I am also undertaking a Graduate Diploma in Pastoral Counselling and will be ordained as an Interfaith Minister in New York this June. For me, it has been an evolving learning journey. During that time I have had the privilege of supporting many brain tumour patients and their families. While my service encompasses all cancer patients, I still actively work with brain tumour patients. It is the people I meet, the stories I hear and the time spent with them that makes this privileged work. The music I offer is designed to provide deep rest, time for reflection, refreshment and renewal. The overwhelming comment I receive is that the music offered at the bedside helps create a quiet restful place. There are no expectations or requirements from patients. They may sleep, talk or rest. It is a holistic service. The music I choose is based on observation, referral requirements, comments, non verbal cues etc and I soon know if the music is appropriate. Typically, a patient will take a deep breath, relax into their bed or chair and look outwards and beyond to the window or into the distance. A restless patient 76
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Music speaks what cannot be expressed,
soothes the mind and gives it rest, heals
the heart and makes it whole, flows from heaven to the soul. (Anonymous)
will quieten down, a tired patient will sleep, a grieving patient will cry, and often a person will start telling me what’s on their mind. One lady, ‘Kate’, I initially saw in hospital, later in community care and then at a hospice. Kate loved the harp. She said she loved its beauty, sound and the way it transported her to a special place away from the hospital. Over some months she
Above: Harper Alison Ware. Her soothing music comforts patients
began to become confused, disoriented and agitated. The staff placed her in a comfortable chair and she was able to look out into the garden. I played music with a slow rhythmic pulse and observed her breathing settle, her agitations diminish, her face relax and soften until she finally fell asleep. Music can provide deep rest. For example, a lady requested her favourite song ‘Moon River’ and listened quietly. We did not speak but she closed her eyes and smiled. She later commented to staff that the harp was beautiful, she felt uplifted and it gave her a sense of peace. Hospitals are by necessity very busy and noisy places.-My aim is to provide some beauty and peace in a busy hospital. I work with four different sized harps. One is made of cardboard that can be left with patients for the day. One lady, ‘Gabby’, spent the day creating tunes with her brother. He said to me that this created a special time that he would always remember. It gave a distraction in a very long hospital day. I recently attended a vigil in the Intensive Care Unit where a woman, ‘Debby’, was dying from an inoperable brain tumour. I played quietly while her family held her and lay quietly with her. It was a privilege to be invited in to this sacred space. It gave the family an opportunity to say goodbye and they felt they were providing something special for her. In moments such as these I find the room becomes very quiet, still and reflective. There is a sense of the sacred. It also enables others to not feel as if they need to fill up the room with noise but gives them permission to just be in that space. I have come to awareness that this work supports, uplifts and nurtures the spirit. Hence, the service encompasses and integrates emotional/spiritual support. I look forward to developing this service further. n
For further information, contact Alison Ware CHM CCM CHP, at gentleharp@grapevine.com.au
Gio’s Fund for research on brain tumors As long as we continue to nourish research on the brain tumors of our children, we nourish hope.
Among projects currently supported
dendritic cell immunotherapy of glioblastoma molecular stratification of high grade glioma in children generation of immortalized cell lines of human medulloblastoma through the expression of a dominant negative form of TP53 gene morphine threatment wich permits doxorubicin to cross blood brain barrier in rat model
Il fondo di Gio – onlus http://www.ilfondodigio.it/
Celldex is pleased to support the IBTA in its mission to provide information, encouragement and hope to brain tumor patients worldwide.
www.celldex.com
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Caring for children and teenagers with brain tumors in Taiwan By Lilyan Song, Director Childhood Brain Tumor Association of Taiwan (ROC)
THE Childhood Brain Tumor Association of Taiwan (ROC) was established in 2000, and we provide six main services: 1. Children with brain tumors who are undergoing treatment are visited by social workers to provide help in adjusting to their illness and adapting to school. We also provide resource referrals and a support group is promoted for patients and families. 2. We offer group recreational activities to help relieve parents’ stress and to provide an exchange of health-care experience. 3. The CBTA assists school-age children with brain tumors who are returning to school after hospitalization.
Above: CHI-CHI Kao, the young girl suspended in a wheelchair, has her first experience of the high-low rope course (up to a height of 16 meters as pictured) with the help of twenty children
4. Occupational training is available to facilitate young adult survivors’ employment. 5. Bereavement counseling and crisis intervention is available to support patients and families. 6. Newsletters are published with educational and scientific articles. We also offer a summer camp for teenagers with a brain tumor. There are a lot of activities in the summer camp, such as the “Challenge Ropes Course”, Camping Picnic”, “Look at who I am”, “Dynamic Meditation”, “Meditation Exercises” and “Tunnel of Love”. There is also a volunteer program. These activities are to help the children face the challenges in life. We hope Right: This summer program includes youth camp and parents development camp
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Above: A school adaptation service is provided
Above: Children can increase their social skills
to assist school age patients with a brain tumor
and encourage each other
who are returning to school after hospitalization
that teenagers with brain tumors can build more confidence and courage and improve their interpersonal relationships with others through the summer camp. Parents can see their children’s performance in the camp and realize how much potential their children have and that children have the ability to deal with difficult things. This can lessen the worry that the parents have. The young volunteer program helps the teenagers learn how to accept other people’s help, how to help themselves and each other, and how to help others. n
From the March 2014 IBTA E-News
Above: Youth volunteers in the pediatric ward are able to rebuild their social skills through their volunteer work of helping patients with childhood
Decitabine and ependymomas: Researchers from Canada, the USA and Europe have identified the possible relevance of decitabine (Dacogen) to treating ependymoma tumors but caution that a properly conducted clinical trial is required and are seeking funds for that purpose. n
brain tumors
Now for a second university degree after brain tumour surgery By Wallis Stabler United Kingdom
I
am 21 years old. I live in Shildon, County Durham in the North East of England. I was diagnosed with a brain tumour in April 2011 at 18 years, a day before my 19th birthday. I became poorly and my symptoms started in October 2010 as complex focal seizures. I was very scared at the time and this explains the long period between the symptoms occurring and the diagnosis. During these episodes my head felt heavy with a spinning sensation and I would feel far away from reality. I was conscious and aware of the 'funny' turn happening, however, I couldn't respond as I couldn't “hear” my surroundings. I was chewing, smacking my lips, and my hands felt heavy with the sensation of pins and needles. I would rub my hands and play with my clothes, for example, with zips and buttons and would mumble a lot. I hid these symptoms when I could feel myself going into one of my seizures and would go into the bathroom so that no one could witness these episodes. They were only discovered by my family when I had a seizure in front of my Nana and I dropped a scalding cup of coffee down 79
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Above: Wallis Stabler - an inspiration to all
myself. I could not remember it happening and never felt the scalding coffee on my skin. I attended an appointment on the 2Oth April 2011 at the James Cook University Hospital in Middlesbrough. After a discussion with a consultant I was rushed in for a CT scan and the tumour was discovered in my right temporal lobe. It was a pilocytic astrocytoma. I was urgently admitted to a ward
and taken for an MRI. I had brain surgery (craniotomy and debulking) on 24th May 2011. I am currently on high doses of the epilepsy medication lamotrigine and levetiracetam, as I still suffer from simple focal seizures. During this time (2010-2013) I was studying for my first degree (BSc Criminology) at Teesside University. I returned to second year studies four months after surgery and graduated with Second Class Honours. It was very hard returning and I was still in my recovery period so I became tired very easily and I was still tender after surgery. It was a struggle but I am pleased that I returned and graduated with my friends. I am currently studying for my second degree, Pre-registration Nursing (Mental Health) at Teesside University, which I commenced in January 2014. After I graduate I would like to work with people who have suffered mental health issues due to brain injuries, or work in the forensic area. I have little contact with other brain tumour patients, my only contact is with some via Twitter. n
Mind the Gap! By Dawn Hamill Bristol, UK
T
he words "brain tumour" stormed into my life on 18th November 2008. A tonic clonic seizure woke me from my slumber and following two urgent CT scans I was told by doctors: “We have seen a lesion; we think it’s a tumour, most likely a meningioma but we won’t know for sure until we have removed it.” “Never heard of it,” I said. “How much hair will I lose?” When the surgeon enquired, I listed symptoms with surprise: frequent headaches - sometimes Frank, my partner gently pulls my hair away from my scalp to ease the pain; I pointed to the spot on my head where the tumour lay beneath. I’ve tripped up a few times this summer, blamed it on my new scandals. And the last few months I have woken with nausea and heaved over my toothbrush - held my hormones responsible for that. Thirty years of nursing experience had not set off my alarm bells! One day and an operation later, my running legs could no longer stand or walk. The day before Christmas Eve I had my second operation for a post operative brain abscess and my left arm stopped working too. So I started the long road of recovery as a one-handed, no-legged, swollenheaded, hole-in-my-skull, happy-to-bealive-kind-of-girl! In hospital - as I shuffled my first steps I set myself some goals: 1. Raise enough money to buy a second standing hoist for the neurosurgical unit £5000 later I bought the hoist. 2. Return to work as Nurse Consultant in Infection Control. A year after my first operation I returned part time, hobbling with two sticks. But epilepsy further complicated my recovery, fatigue was an unwelcome demon and I was forced to retire from my beloved career. 80
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Above: Dawn Hamill, who writes a brain tumour blog
3. Walk to the top of the “Old Man of Coniston” (the highest point in Cumbria in England’s Lake District). I punched the air with delight as I entered the operating theatre for the third time in August 2009 to close the sunroof in the top of my head with a titanium plate; I no longer had to wear my protective helmet! But my life lay in splinters around my stumbling feet and as tears dampened every day, depression dug its claws in. My surgeon referred me to a neuropsychiatrist and I started anti-depressants. A friend gave me the details of the charity Hammer Out Brain Tumours [now called Brain Tumour Support] and as I joined their support group and started counselling, my recovery was kick started again. I felt so guilty. My tumour was benign. I had survived. I learnt that ‘Survivor’s Guilt’ is common. I eventually spoke out about my depression and was surprised how many had been hiding their story! On bad days I took my anger out on the pages of a notebook as my illegible scribbles tore at the paper. I wrote on good days too to remind myself that they existed:
“I walked to the end of the road with the sun on my face and giggled with a friend…” Frank and I married in September 2010 and after a seizure-free year my driving licence landed on the mat. I bought an automatic Mini and went straight to the seaside with my niece. But a year later my seizures restarted. My driving stopped but my writing continued. My scribbles began to create a picture of my journey. I drew a map and wrote chapters for a book. I met with a friend who is an author and she invited me to join her creative writing group. I wanted to write regularly and test how it would feel to go public. So in 2013 I set up a blog - a special kind of website for an online diary. I signed up for the Google Blog Host Blogspot and discovered that simple templates were ready to use. I named my blog Mind The Gap A-Z because the tumour left a gap in my brain, a huge gap in my life and now, when a train conductor announces “Mind the gap…” , it fills me with dread as I can no longer step off without help. I decided to share my story in the hope it may offer some comfort to others travelling a similar brain tumour path. Also, I wanted to educate the public about the reality of living with the effects of a brain tumour, epilepsy and disability. Initially I wrote several posts a week but I now write one or two, ensuring that each post has a clear message with a beginning, middle and end. I share my bite sized blog posts on Facebook and Twitter and discovered a fabulous brain tumour and epilepsy network of friends. I have received emails from people who have read my blog, surprised at the similarities to their own journey. Writing my story lightens my burden. I hope it also helps others to understand the difficulties caused by a benign brain tumour, but that there can be life after
surgery. I still have annual brain scans to monitor any tumour re-growth, am re-learning to swim, have discovered the beauty and peace of mindfulness and the joy each moment of life has to offer. The Old Man of Coniston still beckons, while humour and writing are my constant companions on my ongoing journey of recovery and acceptance. My blog can be found at www. mindthegapa-z.blogspot.com or by entering Dawn Hamills Blog or Mind The Gap A-Z into a search engine. n
Some excerpts from Dawn Hamill’s blog, Mind the Gap A - Z On coping with depression I searched for the old Dawn day and night, looked under cushions and tables…by the side of my chair but someone else sat in her seat…I set a deadline for finding Dawn and hatched a plan if I couldn’t …The pills and counselling gradually dried
the floods and sunshine peeked from behind the dark clouds… http://mindthegapa-z.blogspot. co.uk/2013/03/coping-withdepression.html
is the plan…I trundle from plot to plot, wobble, grab at thin air, shout I’m going... bang… bum on the rhubarb bed. I call for rescue… http://mindthegapa-z.blogspot. co.uk/2013/03/easter-on-my-bumin-rhubarb-bed.html
On disability Disability arrives uninvited, I try to loose him in the physio gym… walking in the village…drown him in the sea…talk him to death in counselling. He is clever…fatigue is his hidden weapon…but he can’t hide survival tools; bus and disability passes, giggles and laughter… http://mindthegapa-z.blogspot. co.uk/2013/03/disability-not-mytype.html
Information; why am I not a size 8? At home Google trembled at my search onslaught for information; meningioma, brain tumour, recurrence rates, epilepsy, paralysis, why is my leg not working, why am I no longer a size 8? (who am I kidding - last time I was a size 8 I was 16, still its worth asking!)… all hospitals should provide information and advice in written format and knowledgeable contacts after discharge – regardless of tumour type. http://mindthegapa-z.blogspot. co.uk/2013/07/information-iwonder-why-i-am-not-size-8.html )
Easter on my bum in the rhubarb bed The sun smiles, the dry sky is like a wall smeared with paint testers, shades of white, blue and grey, a couple of hours at our new allotment
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Life before cancer: a love affair with the past By Karissa Kneeland, United States THIS article first appeared in the on-line magazine Elephantjournal.com and attracted this on-line comment: “Karissa Kneeland is likely somewhere petting and/or giving treats to a dog or a cat or a squirrel or a donkey or a horse... You get the picture. She has been a pet care provider for 10 years and is continuously spreading her love of animals all over New England”. A 66 year old man with a GBM later wrote “Your story is moving and inspiring and I love your writing style”. A father’s caregiver wrote: “Beautifully written ...Thank you for shedding light on what [my dad’s] thought processes might have been like after his surgery”.
disorder. These seizures made me wake up in dread each day. “How many will I have today?” was often the first thought that entered my mind. Having physical evidence of the root of these seizures made the situation feel like a resolvable mission rather than a mysterious, looming dark cloud that floated above me. After the tumor was found, surgery was scheduled to remove it. Surprisingly, I was only slightly nervous considering one small slip of the surgeon’s knife could have left me mentally incapacitated. The nerves were outweighed by the thought of living without the relentless seizure attacks. I woke up from the surgery in Above: The author Karissa Kneeland from New excruciating pain. It felt as though my skull In my mind, there is a constant battle England, United States whose observations on her was still being drilled into. It was so intense between the nostalgic and the present. GBM journey have been chronicled online that I did not have room in my leftover brain Can I be both here, getting leaped on to worry about how I could not remember by dogs eager for kisses as I fight off a the other half feels like an old biddy as I sit what year it was, what my boyfriend’s name nagging headache, while also being there, here drinking my herbal tea while watching was, or what a pencil is called. I could not staying up until the wee hours of the “Antiques Roadshow.” remember how to read, but what did it morning surrounded by friends on random My body’s aging process has seemingly matter? I could hardly keep my eyes open excursions? hastened since the battle began with the enough to find the button by my bed to Recently, an old friend (and former tumor in my brain. push for the next dose of morphine. crush) from college contacted me and we Shortly after college, I was diagnosed with After a few days, my memory respoke for hours. “I’m glad I met you so epilepsy. My neurologist recommended a emerged and the pain lessened. But my many years ago, man, because tonight is precautionary MRI with the slight chance that brain was pissed off at me and it was a lot better talking to you,” he said. In that there was a tumor tucked away in my brain making it known. It had some imperative moment, I realized that I have missed him tissue. As I lay surrounded by the thumping, parts cut out (about one-fourth of it was without even realizing it. honking beats of the machine, I thought removed) and now it has to work on In those first few minutes that we talked nothing more than how much I had to pee. constant overtime to achieve a semi(for the first time in seven years), I was The MRI slipped out of my thoughts until normal level of functioning. Although blasted back to college. Memories rushed a few weeks later when I received a call the seizures have lessened considerably through me—staying up way past my from the neurologist. He asked me to come (hooray!), I now wake up with the worry of bedtime chatting with him on AOL Instant to his office, but I insisted he just tell me how bad my headache will be for the day. Messenger with my clunky laptop on the what he had to say over the phone. There I was diagnosed with a “mystery” glioma bottom bunk in my dorm room; being up was a tumor in my left temporal lobe, he and was told that its proliferative personality late, watching Aqua Teen Hunger Force with said in a solemn voice. would lead to an inevitable regrowth. him on a futon in someone’s apartment; While one might expect me to fall to Although I appear to be a completely feeling those butterflies when he arrived at my knees crying in disbelief, I felt relieved. average 20-something, inside I feel the parties on High Street. I had been suffering from complex partial as if I am 90. I am constantly aware My brain is in a time-travel warp. While seizures, but I was dismissed by doctors of the empty hole that was once my half of me still feels like that 20-year old, as having bad PMS or some type of panic hippocampus and amygdala. 82
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Well, almost constantly. When I reflect on my life before the diagnosis, I am, however fleeting, the person I was before becoming a brain cancer patient. When I spoke with my man-friend from yesteryear that night, I retrograded back to the person who never imagined having cancer. I was a normal, healthy and energetic woman. I adore moments such as those. I wonder if I would I still have such an intimate love affair with the past if I did not have brain cancer. Perhaps I crave the solace that comes with reflecting on my fun-filled past rather than contemplating how many years I have left to live into the future. When I awoke the morning after my late-night chat, my nagging headache had returned, but I still had a smile on my face as the newly resurfaced memories swirled through my mind. n Reproduced by kind permission of elephantjournal.com First published 23 October 2013. Elephantjournal editor: Sara Crolick
From the October 2013 IBTA E-News
From the January 2014 IBTA E-News
Blood-brain barrier: UK researchers have successfully used the tumour necrosis factor (TNF) protein in mouse models to disrupt the blood-brain barrier and permit the introduction of the anti-breast cancer drug trastuzumab to treat brain metastases. n
Stress or a tumour: An inquest in the UK has heard that doctors failed to diagnose that a 16 year old girl had a brain tumour and, instead, believed she was suffering from stress or her condition was related to a bulimic episode a year before. n
The IBTA has contacts in
From the February 2014 IBTA E-News
110 countries throughout the world to whom it makes available its free monthly electronic news and its free annual magazine, Brain Tumour
Vestibular schwannomas/ acoustic neuromas: In a retrospective case review of more than 600 cases of these tumours at a US hospital researchers concluded that there is a potential role for aspirin in inhibiting their growth. n
Easy it’s not. Brain Tumour Research was launched in April 2009 to raise the profile and funding for brain tumour research in the UK and improve the chances for brain tumour patients. Charities that have united together under the Brain Tumour Research banner include: Ali’s Dream, Anna’s Hope, Astro Brain Tumour Fund, Brain and Spine Foundation, Brain Tumour Research and Support Across Yorkshire, Brain Tumour Research Campaign, brainstrust, Brainwaves NI, Charlie’s Challenge, Children’s Brain Tumour Foundation, Children’s Brain Tumour Research Centre, The Diana Ford Trust, Ellie Savage Memorial Trust, Ellie’s Fund, Inbetweenears, The Jane Packer Foundation, Katie Holmes Trust, Levi’s Star, The Lisa Wiles Red Wellies Brain Tumour Support Fund, The PPR Foundation, Thorne Mason Trust and Trudy’s Trust.
Brain Tumour Research. A tough nut to crack. CALL:
01296 733011 eMail:
info@braintumourresearch.org Let’s connect
GIVE:
www.braintumourresearch.org/donate Registered charity number 1153487 (England and Wales) Company limited by guarantee number 08570737 (England and Wales)
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Celebrating 20 Years Information, Support and Funding Research in Northern Ireland
www.brainwaves-ni.org
On brain tumors, the Internet and life-long learning … an interview with Dr Robert Fink DR. Robert Fink is a native of Baltimore, Maryland. He received his M.D. degree at the University of Maryland School of Medicine in 1961. He completed a residency in Neurological Surgery at the University of Chicago Hospitals and Clinics in 1966, and served a Fellowship in Neurosurgery and Nuclear Medicine at the Donner Laboratory, University of California at Berkeley. He served on active duty with the United States Army Medical Corps (Major) during the Vietnam War and was a Clinical Professor at the University of California, San Francisco. Dr. Fink is married to Ilene Dillon-Fink and they have six children between them with five grandchildren. Dr Fink is is one of the few people with medical qualifications and neurosurgery experience who is an active participant in any of the major online brain tumor discussion groups, called a “List”. See a comprehensive article in this magazine by Al Musella about the concept of email discussion lists. Dr. Fink’s own website is http://www.rafink.com
IBTA: What led you into the field of medicine, and to neurosurgery and treating brain tumors in particular? Robert Fink (RF): Between the ages of three and six, I had three throat operations for what was a rare, but benign tumor, a juvenile angiofibroma of the nasopharynx. Instead of being forever traumatized, I became interested in surgery and resolved to "do that when I grew up". Thus, my education was "directed" from the beginning and I had no hesitancy later on. Prior to medical school, I had developed an interest in OB-GYN [obstetrics and gynaecology], but when I was exposed to Professor Walle Nauta (neuroanatomy at the University of Maryland), I was irrevocably fascinated by the nervous system. Initially, I was interested in neurology, but when I Above: Dr Robert Fink saw that neurological surgery represented a more fertile field for actually doing of California, San Francisco. I concentrated something, I definitively decided on a career on trauma and tumor surgery, but did all in neurological surgery. forms of neurosurgery except, after the first five years or so of my practice, I did IBTA: You have had a long-standing no pediatrics. I practiced in the Berkeley, practice in the San Francisco East Bay California area for 48 years, interrupted area. Can you tell us something about by two years of medical duties with the your current work? U. S. Army during the Vietnam War. I am RF: Due to my own medical issues (back currently active on the Internet in various and prostate problems), I retired from active Lists and neuro-related sites, and do some clinical practice (neurosurgery) in 2012, legal consulting and forensic medicine. but before that, I was, for more than forty I am still quite busy, but, at the age years, an active neurosurgeon with an of 75, I am no longer subject to the office and surgical practice, and a teaching middle-of- the-night telephone calls from position (Clinical Professor) at the University the hospital! 84
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IBTA: You have been an active contributor to brain tumor-related Internet discussion groups - what led you to participate in these groups? RF: When my beloved first wife of 25 years became ill and died of ovarian cancer (with brain metastases) in 1985 at age 47, I decided that I would offer my expertise to the world on the Internet. The work that I have done (and continue to do) in this area is in loving memory of my late wife, Doris Caroline Levi Fink. IBTA: What do you see as your role in the internet discussion groups? RF: I see my job as using terms which lay people can understand, offering the fruits of my training and experience even though I no longer actually "lay hands" on patients and treat such devastating conditions as brain tumors. There is much advancement in this field, and there is also a great deal of information on the Internet which is not scientifically proven and I try to keep the scientific aspects in strong perspective while supporting the ability of others to express their opinions. I also like to add some of my personal philosophies to my commentaries, as despite my scientific background, I consider myself a religious person who strongly believes in God and who follows a spiritual life as well as that of a man of science. Another reason for my participation in the Lists is that of my learning from others,
understanding and control my feelings of annoyance. The valuable assistance of my wife, Ilene, who is a psychotherapist and family counselor, has helped me significantly in this regard.
IBTA: Why do the old questions on the List keep recurring? RF: The old questions keep recurring because the membership of the List changes rapidly, from loss of patients from the disease, and from those who either have seen their problems solved or who no longer wish to cope with the strong emotions involved. Of course, there are some who have seen positive results to them and their families, and some of these people remain on the List to share what they have learned from new members.
Above: Dr Robert Fink and his wife Ilene Dillon-Fink
including not only my peer professionals, but also from the patients and their families involved in the fight against brain tumors. Even in retirement, one never stops learning!
IBTA: Are you disappointed that there are not more doctors participating in the Internet discussion groups? RF: I think that the reason that there are not more doctors participating in the group is that not many physicians are aware of the List. I would like to see more publicity about the group and believe that this would attract more professionals. IBTA: Many participants in the groups gravitate towards alternative or unproven treatments. Why do you think that is? RF: Unfortunately, most of the brain tumors that develop are either moderately or severely malignant and there are relatively few which can be “cured” using today’s armamentarium of treatments. Furthermore, many of the treatment modalities have bothersome side-effects which can negatively affect lifestyle while, at the same time do not offer a strong chance of beneficial results. People tend to be naturally attracted to treatment programs which “promise” positive results without side-effects (other than high monetary costs, which, unlike the orthodox treatments, are usually not covered by traditional health insurance.) Many of the non-traditional treatments are 85
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conflicted between hope and desperation, with the “push” based on hope rather than on science; and the cost is usually massive which, in more than a few cases, can lead to the financial ruin of the family. When I see the possibility of such a situation developing, I try to point this out to the patient and family so that an informed choice can be made.
IBTA: Do you ever get annoyed at how some participants react to your posts? RF: When I first began to participate in these Lists, I found myself becoming annoyed with what seemed to be studied ignorance on the part of some questioners who denied the value of scientific-based approaches to management of brain tumors. Some of these actions by the non-scientifically-oriented people involved personal attacks on myself, including charges that my comments were financially motivated. I have never received one penny for my work on the Lists. On another List, when one participant made negative remarks about my late wife and her illness (blaming my scientific approach for her demise), and the management of that List refused to censure that behavior, I resigned and no longer participate in that List. I have come to realize, however, that many List members are faced with agonizing decisions and the impending loss of their loved ones, and so, as I have continued to participate in the Lists, I have learned to become more
IBTA: And, finally, what are some of your other brain tumour-related activities? RF: Although I retired in May, 2012 from the clinical practice of neurological surgery, I remain available for consulting to patients, families, and other professionals. One of my daughters has been working with a non-government (nonprofit) organization in Ecuador, and I have recently consulted online on several young patients with brain tumors, and recently was involved in making some recommendations concerning a patient in Kosovo and in Turkey. I also helped bring a young man from Palestine with a serious head injury to my hospital in California, where my team and I reconstructed his skull and repaired damage due to bullet fragments received as the innocent bystander to armed conflict. The patient did well and was returned to his family after surgery and rehabilitation in California. n
From the February 2014 IBTA E-News Pituitary tumour: Doctors in India have removed a pituitary tumour from a twenty-five year old woman who had grown to a height of seven feet eight inches (233.7 cms), and is believed to be the tallest woman in the world. n
Focus on Colombia and the 3rd Symposium, International Brain Tumour Awareness Day, 2013 Report of the 3er Simposio Dia Internacional de la Concientizacion en Tumores Cerebrales, Bucaramanga, Colombia By Gabriel Vargas, MD Neurosurgeon, Coordinator of the event.
FOR the third year in a row, in support of the International Brain Tumour Awareness Week 2013, we met on Saturday 2nd November 2013 in the city of Bucaramanga, Colombia. We organised the symposium “3er Simposio Día Internacional de la Concientización en Tumores Cerebrales” at the Mayor Auditorium of the University of Santander (Universidad de Santander) UDES, with the support of the Clínica Chicamocha of Bucaramanga, the Section of Oncological Neurosurgery (Capitulo de Neurocirugía Oncológica) of the Federación Latinoamericana de Sociedades de Neurocirugía FLANC, and Section of Neurooncology and Base of Skull (Capítulo de Neurooncología y Base de Cráneo) of the Asociación Colombiana de Neurocirugía ACNCx. From 8 am to 6 pm, physicians, health
personnel interested in the topic, students, patients and families attended various interdisciplinary academic lectures given by a group of experts in each one of the topics relating to “Advances in the Diagnosis and Treatment of Brain Tumors”. The University UDES arranged through the National Academic Network of Advanced Technology (RENATA) to transmit the entire event on-line and in real-time. Nineteen lectures were presented and one videoconference from Austria was organised, all of this to an audience that reached 260 registered people. n All event details can be viewed on these webpages www.neurocirugiaoncologicaflanc. blogspot.com www.neurooncologiaybasedecraneoacncx. blogspot.com Above: A poster promoting the 3rd Symposium
Below: A photo of the participants who attended the symposium “3er Simposio Día Internacional de la
for International Brain Tumour Awareness Week
Concientización en Tumores Cerebrales” at the Mayor Auditorium of the University of Santander, Colombia
in Colombia
Above: A section of the large audience at the Symposium
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Brain Tumour Awareness Day in Argentina By Dr Alejandra T Rabadán, MD, PhD Chief of Division of Neurosurgery, Institute for Medical Research A. Lanari, University of Buenos Aires UBA, Argentina
DR Rabadán is President of the Section of Skull Base, Latin American Federation of Neurosurgical Societies FLANC; Past President of the Section of Neurooncology, Latin American Federation of Neurosurgical Societies FLANC; President of the Section of Neurooncology. Argentine Society of Cancerology; active Member of the Argentine Association of Neurosurgery AANC; and International Committee Chair of the AANS/CNS Section of Tumors, American Association of Neurological Surgeons. Here, Dr Rabadán reports on Argentina’s Brain Tumour Awareness Day. Since its initiation in 2005, the Section of Neurooncology of the Argentine Society of Cancerology (SAC) has continued to support annual interdisciplinary activities comprised of neurosurgery, clinical oncology, radiation therapy, radiology and basic sciences. Each year various events, such as post-graduate courses, symposiums and meetings, occur in an effort to foster the development of neurooncology. See www.socargcancer.org.ar From the medical care point of view, great strides have been made so that quality neurosurgical oncology care, as well as care rendered from other related disciplines such as radiology and clinical oncology, can be accessed by patients in Argentina. Chemotherapy, for instance, is now widely available for patients. While radiation therapy and radiosurgery have a long tradition in Argentina, these
Above: Dr Alejandra Rabadan
resources have been modernized in recent years. Although the majority of radiation therapies centers are private, the public
health organizations have agreements with them, thus allowing patients access to the appropriate type of radiation therapy. Palliative care is another important specialty that has grown considerably over the last several years. Nonetheless, the most problematic issue remains the scarcity of neuropathologists in the region. In that sense, the contribution of Dr. Gustavo Sevlever, who recently organized a fellowship in neuropathology is an extremely valuable advance. Another issue in our region has long been the lack of regional statistics on brain tumors. To rectify this, we have enthusiastically joined new collaborations. In Argentina, the AANC and the SAC Section of Neuro-oncology also support and participate in the Argentine Interhospitals Neuro-oncological Registry (RAHON) that was first initiated in 2012 under the leadership of Dr. Mercedes García Lombardi et al. See www.rahon.org We have joined the Neuro-oncological Section of the Latin American Federation of Neurosurgical Societies (FLANC); the Neurooncological Section of the Argentine Society of Cancerology (SAC) and AANC as supporting organisations of the awareness-raising projects of the International Brain Tumor Alliance (IBTA). The result of this collaboration was the second annual “Brain Tumour Awareness Day,” which took place on October 24, 2013 in Buenos Aires. Our purpose was to give information about the modern diagnostic methods and treatments. n Left: A section of the audience at the Brain Tumour Awareness Day
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Supporting organisations for the IBTA’s 2013 awareness-raising activities For an organisation or group to be a "supporter" of the International Brain Tumour Awareness Week and The Walk Around the World for Brain Tumours, the IBTA requires no financial commitment or fee to be paid to us by you. All we are asking for is your enthusiasm in supporting and promoting these events and for allowing us to add your name to our list of supporters. Thank you. Organisations wishing to be listed as supporters of the IBTA's two awareness raising activities should contact chair@theibta.org 42nd Vienna Scout Troop "St Sebastian" (Austria) n Accelerate Brain Cancer Cure (USA) n ACT Brain Tumour Network (Australia) n Addi’s Faith Foundation (USA) n Adult Brain Cancer Support Association of South Australia n AITC - Onlus Associazione Italiana Tumori Cerebrali n Alis' Dream (UK) n American Brain Tumor Association (ABTA) n Anna’s Hope (UK) n Andrew McCartney Trust Fund (UK) n Angels Among Us Walk (USA) n Neurooncological Section of the Argentine Society of Cancerology n Association pour la Recherche sur les Tumeurs Cérébrales - Paris - ARTC (France) n Association pour la Recherche sur les Tumeurs Cérébrales – Rhone Alpes - ARTC (France) n Associazione Italiana Di Neuro-Oncologia (AINO) n Astro Brain Tumour Fund (UK) n Australian Genomics and Clinical Outcomes of High Grade Glioma - AGOG n Australian Pituitary Foundation Ltd n Austrian Society for Neurooncology (SANO) n Barbara DiStase Memorial Walk (USA) n Barrow Neurological Institute n Belgian Association of Neuro Oncology - BANO n Michael G. Belz Foundation (USA) n Beyin Tumoru Destek Grubu Turkiye n Brad Kaminsky Foundation for Brain Tumor Research (USA) n Braincare BC - British Columbia Cancer Agency (Canada) n Brain and Spine Foundation (UK) n Brain Candy Project (USA) n BrainLife n Brain Science Foundation (US) n Braintrekking (Hong Kong) n Brain Tumour Action - BTA (UK) n Brain Tumour Alliance Australia - BTAA n Brain Tumour Association of Western Australia n Brain Tumour Barcelona (Spain) n Brain Tumour Foundation of India n Brain Tumour Research (UK) n Brain Tumour Research and Support Across Yorkshire (UK) n Brain Tumour Research Campaign – BTRC (UK)n Brain Tumour Support Group, The Austin Hospital (Australia) n Brain Tumour UK n Brainwaves Brain Tumour Support Group (UK) n Brains Together for a Cure (USA) n Brainstrust (UK) n British Acoustic Neuroma Association - BANA) n British Neuro-Oncology Society (BNOS) n Bryan's Dream Foundation (USA) n BT Buddies (UK) n California Brain Tumor Association (USA) n Canadian Alliance of Brain Tumour Organizations - CABTO n Cancer Council Queensland Brain Tumour Support Group (Australia) n Cancer 52 (UK) n Cancer World magazine (Italy) n Capitulo de Neurooncologia y Base de Craneo Asociacion Colombiana de Neurocirugia (Colombia) n CART-WHEEL (Australia) n Cathean Limited Medical Writing Consultancy (UK) n Cellular and Molecular Neuro-oncology Research Group, University of Portsmouth (UK) n Central Brain Tumor Registry of the United States - CBTRUS n Central New Jersey Brain Tumor Support Group (USA) n Centre de Recherce Public de la Sante - CRP-Sante (Luxembourg) n Charles Warren Brain Tumor Awareness Foundation (USA) n Charlie’s Challenge (UK) n CHANCE CHildren AgaiNst CancEr Association Beirut (Lebanon) n Children's Brain Tumour Research Centre Nottingham (UK) n The Christie Radiotherapy/CNS Team n Clowns in the Sky (UK) n Collaborative Ependymoma Research Network (CERN) Foundation (USA) n Comprehensive Cancer Center Vienna Central Nervous System Tumours Unit - CCC-CNS n Chris Elliot Fund / The Elliott Foundation (USA) n Cristian Rivera Foundation (USA) n Cullather Brain Tumor Quality of Life Center, Bon Secours Health System (USA) n The Cure Starts Now Foundation (USA) n Deutsche Hirntumorhilfe (Germany) n Dr Marnie Rose Foundation (USA) n Ed Evans Foundation (UK) n Edinburgh Centre for Neuro Oncology - ECNO (Scotland) n European Association of Neuro-Oncology n European CanCer Organisation (ECCO) n European Organisation for Rare Diseases (EURORDIS) n European Organisation for Research and Treatment of Cancer – Brain Tumour Group n European School of Oncology (ESO) n Florida Brain Tumor Association (USA) n Glioblastome Association Michele Esnault - GFME (France) n Gray Matters Foundation (USA) n Grey Matters (Australia) n Gruppo Italiano Cooperativo di Neuro-Oncologia - GICNO n Hammer Out Brain Tumours (UK) n Headsmart Be Brain Tumour Aware (UK) n Hjernesvulstforeningen (Norway) n Il Fondo di Gio ONLUS (Italy) n Imagine for Margo (France) n Indian Society for Neuro Oncology (ISNO) n Instituto nacional de enfermedades neoplasicas INEN (Peru) n International Association for Hospice & Palliative Care - IAHPC) n Irene ONLUS (Italy) n Ben & Catherine Ivy Foundation (USA) n Joe Di Palma Brain Tumor & Pediatrics Foundation (USA) n Katie McKerracher Trust (UK) n Kartu Lengviau (Lithuania) n Kings Health Partners Neuro Oncology Service n Kortney Rose Foundation (USA) n Latin American Federation of Neurosurgical Societies - FLANC n League Against Cancer, County PGZ-Rijeka (Croatia) n Leap For A Cure (USA) n Legacy Brain Foundation (USA) n Levi’s Star Children's Brain Tumour Charity (UK) n Mark Linder Walk for the Mind (USA) n Liverpool Hospital (Australia) Brain Tumour Education and Support Group n mAss Kickers Foundation (USA) n Meagan’s Walk - Creating a Circle of Hope (Canada) n Meningioma UK n Michael Quinlan Brain Tumor Foundation (USA) n Monmouth and Ocean County Brain Tumor Support Group Inc (USA) n The Kevin Mullin Memorial Fund for Brain Tumor Research (USA) n Musella Foundation (USA) n Naseem’s Manx Brain Tumour Charity (UK) n The National Brain Appeal (UK) n National Brain Tumor Society (USA) n Neurooncology Working Group of the German Cancer Society – NOA n Neuroscience Centre, New Queen Elizabeth Hospital, Birmingham (UK) n Newro Foundation (Australia) n The Nicholas Connor Institute (USA) n Nick Gonzalez Foundation for Brain Tumor Research (USA) n NOgIN, The Neuro Oncology Information Network, Westmead (Australia) n Northwestern Brain Tumor Institute (USA) n One More Day Inc - David Bailey (USA) n Paul Levitt Foundation (UK) n Pediatric Brain Tumor Foundation (US) n Pediatric Brain Tumor Network of Japan (PBTN) n The Gerry and Nancy Pencer Brain Tumor Centre (Canada) n Philippine Alliance for Brain and Spine Tumours Inc n Philippine Brain Tumour Alliance n Rachael's Ribbons of Hope Foundation n Rare Cancers Europe n Rare Disease UK n ROC On! (USA) n Rarer Cancers Foundation (UK) n Romanian Society of Radiotherapy and Medical Oncology n Sally Payne and Friends (Australia) n Scottish Adult Neuro-Oncology Network (SANON) n 2nd Department of Neurology, University and Derer Hospital, Bratislava (Slovak Republic) n The John Sierzant Brain Tumor Support Group (USA) n Society for Neuro-Oncology - SNO (USA) n Sontag Foundation (USA) n Sophie’s Wish (UK) n Southeastern Brain Tumor Foundation (USA) n STOPhersentumoren.nl (The Netherlands) n Students Supporting Brain Tumor Research - SSBTR (USA) n Svenska Hjarntumorforeningen (Sweden) n Sydney Neuro Oncology Group Ltd (Australia) n Tali’s Fund (Canada) n Teenage Cancer Trust (UK) n The Brain Tumour Charity (UK) n Tug McGraw Foundation (USA) n United Brain Tumour Support (Australia) n Victorian Race Walking Club Inc (Australia) n Voices Against Brain Cancer (USA) n The Charles Warren Brain Tumor Awareness Foundation (USA) n We Can, Pediatric Brain Tumor Network (USA) n Wendy J Pierson Foundation for Brain Cancer Research n Werkgroep Hersentumoren (Belgium) n Worcestershire Brain Tumor Support Group (UK) n Wylie’s Day Foundation (USA) n Zimbabwe Brain Tumor Association n Z.V.I. Health Consumers (Israel)
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University of Cincinnati (UC) Brain Tumor Center Run/Walk
Above: A 5 kms walk is too far for this pooch participant!
Above: Walkers from the “Cranium Crusaders” group.
CINDY Starr from the University of Cincinnati (UC) Brain Tumor Center informed the IBTA that its Run/Walk on 27 October 2013 with 2,350 walkers and runners, "contributed" 11,750 kilometers 7,304 total miles - to the IBTA's year-long Walk Around the World for Brain Tumours. Cindy wrote: “Thousands of individuals were touched by the glow of camaraderie, compassion and support last weekend during two of the UC Brain Tumor Center’s most significant events of the year. On Saturday more than 170 patients, caregivers and family members from six states participated in the Midwest Regional Brain Tumor Conference at the Miami University Voice of America Learning Center in West Chester, Ohio. And on Sunday, 2,350 people from 19 states walked or ran in the “Walk Ahead for a Brain Tumor Cure” at Sawyer Point in downtown Cincinnati. “The fourth annual 5k walk/run, chaired by survivor Brian Wiles and his brother, Joe Wiles, has raised more than $213,000, with proceeds still coming in. But the number of participants and dollars raised were not as exciting to Brian Wiles 89
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as the number of teams – 191 – and “the individual stories of hope” they represented. “Walking through the event on Sunday, the sun was shining on each team as they smiled and shed a few tears for their loved ones,” Mr. Wiles reflected. “The event’s new memory quilt, created from team T-shirts, “will provide the symbolic future of hope for the event,” he added. “Proceeds benefit education and research at the Brain Tumor Center, one of nine centers of excellence within the UC Neuroscience Institute, one of four institutes of the UC College of Medicine and UC Health. Cumulative funds raised since 2010 have surpassed $700,000. “These funds enable patients and families to attend the Brain Tumor Conference at no cost while also fuelling basic research into the major pathways used by cancer genes and the specific proteins that play a role in the spread of cancer cells. Researchers at the UC Brain Tumor Center are also using “Walk Ahead” funds to study compounds that inhibit the ability of cancer cells to utilize energy, with the hope of converting such compounds
Above:The quilt made from T-Shirts
into promising new medications. “The Brain Tumor Conference, which was sold out, included 20 speakers, 16 volunteers, and exhibitors from 12 organizations. Registrants came from Ohio, Kentucky, Indiana, Michigan, Maryland and Arizona. Following presentations about wellness, patients and their families broke into 90-minute question and answer sessions related to specific brain tumor diagnoses (glioma, acoustic neuroma, meningioma and pituitary tumors). The conference was directed by Luke Pater, MD, Assistant Professor of Radiation Oncology at the UC Brain Tumor Center.” n
The 2014 UC Walk will be held on 26 October. Contact: cstarr@mayfieldclinic.com
Hope vs Realism -
a survey of our "Brain Tumour" magazine readers Based on a poster presentation by Denis Strangman IBTA Chair and Co-Director, to the 12th Australian Palliative Care Conference, September 2013, Canberra
ON 11 May 2013 the IBTA distributed a sixteen-question survey to 5,600 of its contacts for whom it held an email address on its database. It used the computergenerated Survey Monkey program and asked questions about its monthly E-News bulletin and its annual Brain Tumour magazine, among other subjects. Many survey recipients would have been in recent direct receipt of a copy of the magazine but some would not have, because the IBTA does not have their postal address. 760 people (13.6%) responded to at least one of the questions in the survey and 571 (10.2%) responded to Question 7, which was a question about balance: “Concerning the content of the [Brain Tumour] magazine, is the [content] balance appropriate between stories of hope, compared with stories of realism, between interviews with specialists and patients and caregivers, between paediatric and adult brain tumours, between the different countries. Please expand your “yes” or “no” answer if you wish.” The inclusion and wording of Question 7 had been prompted primarily by an awareness that many of the IBTA’s magazine readers either were, or had contact with, someone who suffered from a malignant primary brain tumour for which the average prognosis for a high grade glioma is less than a year. It is one of the most lethal of all cancers. Many respondents focused their answer on the aspect of hope versus realism. This subject touches on the challenges posed by our interaction with brain tumour patients and their caregivers – what do they wish to hear? Do they wish to read 90
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Above: Covers of Brain Tumour magazine from 2010, 2011, 2012 and 2013
information about others in a similar situation? The discussion about balancing hope and realism for patients with a lethal cancer, including brain tumours, is the subject of on-going study among researchers and health professionals.
Results Respondents by country: Of the 571 people who responded to Question 7 the largest responding country group was the USA with 152 respondents, followed by Australia with 133, and the UK with 100, which tends to reflect the IBTA’s main constituencies. The remaining participants came from 44 other countries. Overall answers of Australian, USA
and UK responders to Question 7 (about balance): Australia - Yes (116 – 87.2%); No (8); Indeterminate (9); USA -Yes (152 92.8%); No (2); Indeterminate (9); UK - Yes (88 - 88%); No (3); Indeterminate (9). Analysis of comments supplied by the Australian respondents: bearing in mind that many respondents were evaluating ”balance” from a non-hope/ realism perspective, the responses warrant closer examination. Among the Australian responses were the comments reproduced in the accompanying text box, mostly from carers because the patient responses were usually a monosyllabic “Yes”, as was the case with the USA and UK “Yes” responses from all categories of survey participants.
A selection of individual Australian responses:
Patient: "Yes. We understand the position we are in but we learn from others in the stories what they too are going through. Also, the hope that some stories give."
Carer: "Yes. There are always stories of long term survivors as well as families and friends who have been able to move on to a positive and rewarding life after losing their loved one."
Carer: "It gives me hope that you report so thoroughly on the research and that things will change in the future. Not there for my brother but it will be for someone else."
Carer: "Yes, I think so...........it is a balancing act between realism and keeping people positive even in the face of a disease that may be terminal."
Carer: "I would love to hear more stories of hope, more stories of survivors. I know we have to be realistic. This disease kills sometimes more than we like to think about. However, we are faced with this prospect every single day so the last thing I want to do is pick up a magazine and read about someone's sister/ husband/ wife who has died. I believe in tributing these people but having articles about it makes me depressed and I hardly want to show my loved one, the patient, the magazine. However, if there are articles about the patient dying it would be great to see the article turned around to how they have lived past the death of a loved one because we all wonder how we would cope. I love hearing about the new possible treatments and their trials. I love hearing from people currently fighting. I love hearing from the medical profession if they have something new to offer. It is also great to hear about their patients who have responded well. We all know the doom and gloom and unless we are trying to get funding, then it is just sometimes too much to bear."
Carer: "Sadly my father passed away 4 months ago so feel like some info a little late for us. However, it is encouraging to see the work going on in the world and see that we don't suffer alone."
Carer: "I don’t read it in depth; my partner has already passed away from his brain tumour so sometimes I can’t read stories of hope when he had none."
The IBTA has contacts in 110 countries throughout the world to whom it makes available its free monthly electronic news and its free annual magazine, Brain Tumour
Conclusion 87.2% of the 133 Australian readers who responded to a question about “balance” endorsed the content balance in the IBTA’s Brain Tumour magazine but in examining several of the more detailed responses which referred to the balance between hope and realism it is obvious that readers have different perspectives and to implement an overall emphasis which favours only one approach such as “more hope”, “less realism”, or “more facts”, could alienate significant sections of the readership. Producing a magazine that has the right balance between hope and realism for the mixed readership from this particular community requires more “art” than “science”. Frequent surveys of the readership, utilising the now widely available computer-generated survey programs, will produce useful, on-going feedback for the editors about the success or otherwise of their efforts to achieve this.
Comment We have taken on board the comments from our readers and hopefully you will come across a number of articles in this issue describing how something positive has come out of adversity. n
From the July 2013 IBTA E-News Long term effects: Parents of Canadian children treated for their cancer when young have formed a “Pediatric Cancers Survivorship Society of B.C. (British Columbia)” to advocate for better treatment for their now adult children who suffer from complex health problems. Some of these children were given heavy doses of radiation or chemotherapy when young but treatments have now changed following greater recognition of possibleLeft: long-term The entire family effects. A doctor who sought in Hawaii in the government fundingsummer to identify of 2012. pastLeft to paediatric patients who right:should Jake, Kim, be Dallas, warned about possible Janice late effects and Anthony has had his request rejected. with Jake n and Kim’s three children.
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An interview with Gaetano Finocchiaro, MD Director, Department of Neuro-Oncology, Istituto Neurologico Carlo Besta, Milan, Italy
IBTA: Where did you spend your childhood? Gaetano Finocchiaro (GF): I was born in Milan, northern Italy, and grew up there. But both my parents were from Sicily, very south, in the middle of the Mediterranean Sea. A nice mix, in my opinion. IBTA: Did you come from a family environment that had a connection with medicine or research? GF: To some degree. My uncle was an MD. So my mother (his sister) who really admired him, was pushing me to be a medical doctor. Not exactly my feeling at that time. Eventually I decided to try, as I was attracted by psychiatry. But when I had my exam, and did a little practice before, I realized that real psychiatry was truly different from what I had in mind. I still remember attending an interview with a schizophrenic patient behind a false mirror. I just thought there was nothing really relevant I could have done for him as a doctor. IBTA: What attracted you to research and to the brain tumour area specifically? GF: I have always been very attracted by science. It was kind of theoretical at the beginning. But then, thanks to my mentor (Dr Stefano Di Donato) I had the chance to work on the biochemistry and the genetics of rare diseases caused by mutations in mitochondrial enzymes. I spent three years at Yale University, in the Department of Genetics. Just great! At that time (the late 1980s) the genetics revolution was starting and I had the chance to be there, right there, in the middle of it. And when I went back to Milan, I could start applying the techniques I learned to novel diseases and genes. But eventually I got more and more interested in the fascinating biology of cancer, specifically brain cancer. And Di Donato was nice enough to let me do what I liked, even though it was not what he liked. 92
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Above: Dr Gaetano Finocchiaro who is based at the Istituto Neurologico Besta in Milan, Italy
I always thought about cancer as an extraordinarily clever, dynamic enemy - an enemy it was worthwhile fighting with. Sometimes it was (and still is) kind of personal. IBTA: What are the biggest challenges in defining the genetic and genomic landscape of glioblastoma? GF: I guess that a number of “technical” (and economic) issues are becoming less relevant and challenging. But biological issues are still there. Heterogeneity, in particular. We have seen in renal cancer and to some degree in brain cancer - that different areas of the tumor may express different drivers. That is, important and necessary genetic mutations that do not necessarily derive one from the other. This increases the complexity and, as a consequence, might decrease our capacity to target the tumor effectively. But this is the real tumour: complex. We have to face it and devise new methods and techniques to know the actual landscape we are facing in different stages of the disease. That landscape, for instance, may be significantly diverse after chemotherapy with temozolomide.
IBTA: Can you briefly describe your work with brain tumour immunotherapy research? GF: This started in the late 1990s with experiments based on the release of cytokines into the tumour, driven by viral constructs (gene therapy) or released by stem-like cells (cell therapy). We then moved to dendritic cells. These are very powerful cells of the immune system that recognize foreign or abnormal proteins and “present” them to other immune cells for their response. The use of dendritic cells is now in the clinic and we will see whether they will maintain at least part of the efficacy shown in pre-clinical models. And we also started clinical work with vaccination against the EGFRvIII peptide, an abnormal protein resulting from a genetic abnormality present in about 25% of glioblastomas. With this and other strategies we always try to reeducate the immune system to recognize and fight against the tumour. IBTA: Do you anticipate any significant breakthrough in brain tumour therapies in the next ten years? If so, in what area? GF: As you may recall, a mutation in a gene, IDH1, was discovered in 2008 and found to be present in the majority of grade II and III gliomas. I think there are reasonable chances to find a molecule that can interfere with the new function that this mutated protein acquires. Even though these tumours are less aggressive than glioblastoma if such drugs show some efficacy we would definitely have a breakthrough. For glioblastoma it seems possible to me that new drugs that tested positive in melanoma and other malignancies (the so-called checkpoint inhibitors) may show efficacy. Their combination is also promising. If we talk about ten years from now we should also consider that next generation sequencing may very well provide more and novel targets for vaccine therapy or dendritic cell immunotherapy.
IBTA: What is at the top of your wish list for brain tumour patients in your country? GF: I would say that Italian patients deserve a strong motivated community of neuro-oncologists acting together to offer them the best available treatments or experimental protocols. We have very good groups and individuals but they would be much more effective in cooperation. Almost on the same level, my wish would be for a strong clinical and research center on brain tumours established in the southern part of Italy. Too many brain tumour patients still have to move hundreds of kilometers away to receive adequate treatment. IBTA: What inspires you in your research work? GF: I guess initially it was mostly scientific “curiosity” to understand the extraordinary, malignant capacity of glioblastoma and, in particular, the ability of the tumour to overcome whatever treatment was available. In the last five years I have started clinical work and together with that curiosity came a progressively stronger feeling, the necessity
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as a human being, to do more (much more) for patients at all possible levels - particularly for young patients. I was so happy when I saw the results of Nada Jabado and Stefan Pfister (see Schwartzentruber, Nature 2012), who discovered novel, important mutations in pediatric glioblastomas! IBTA: How do you cope with the emotional and psychological challenges to you personally arising from your work? GF: With patients I focus on whether we could really offer them everything that is realistically available in the different stages of their disease. I can be happy or sad about the results, but it is important that I am convinced that we did all we could do. With science it is different. I am never fully convinced that we are doing as much as we could. I often think that we should stretch things more, be faster, be more insightful… that is hard. IBTA: Is there anything you would change about current practices for brain tumour patients in your country? GF: I would really like the concept of
evidence-based medicine to become a truly common belief in the neuro-oncology community. There are still doctors who consider brain tumours as something not worth any serious medical efforts. Or there are colleagues who propose treatment “variations” that do not have a scientific rationale. This should change, possibly soon. IBTA: How do you relax? Do you have any hobbies? What do you do in your spare time? GF: Good question! I must say, I don’t relax too much. I like cooking a lot, and my family seems to enjoy it. I relax going to the movies. I love the sea and I would love sailing, but for some reason I never was able to pursue this hobby. IBTA: Do you have anything else you wish to add? GF: I would just like to add that I have seen IBTA in its infancy when it first was established. I am completely happy to see it growing up steadily and becoming a young, bright, energetic “adult”. I think it’s a very exciting time of life for them! n
Brain tumors in The Netherlands By Jelle Jan de Vries and John de Bruin Members of the Executive Board of the Supportgroup Braintumors Cerebraal, The Netherlands
T
he Netherlands is a small country. The longest distance you can drive is about 350 kms (217 miles). It has about seventeen million people. Every year approximately 1,200 people are diagnosed with an invasive, primary malignant brain tumor (excluding meningiomas, etc). We are in the fortunate position to have modern diagnostic equipment and treatments available here. In relation to diagnostic equipment there are opportunities for MRIs, PET-MRIs, fMRIs etc. For surgery there are opportunities for neuro-navigational surgery and for awake surgery. With respect to radiation therapy, stereotactic radiosurgery, Gamma Knife, CyberKnife, IMRT (intensity-modulated radiation therapy) and IGRT (image guided radiation therapy) are all available. There are four proton radiation centres planned for The Netherlands, although it is not yet clear if this therapy will be widely available for brain tumor patients. Chemotherapy is also widely available, although there are European regulations and reimbursement policies that create barriers for accessing some cytostatics that are available in other countries like the US. If a treatment is not available, then there is the possibility of receiving treatments in other countries, mainly in Belgium and Germany, but insurance coverage may be an issue in individual cases. Following treatment there are various rehabilitation services available here, even for many years after the initial treatment.
Financial background and treatment trends This is all being reimbursed by our healthcare system. Every person who lives in The Netherlands is obligated to join the healthcare insurance system, for which they pay. The fee is about 1100 Euros (about $1500 USD) a year (children are free), with the opportunity of paying a lower rate by 94
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Above: Jelle Jan de Vries (left) and John de Bruin (right) are both members of the Dutch organisation Supportgroup Braintumors Cerebraal. They are pictured here at the IBTA’s First World Summit of Brain Tumor Patient Advocates in California in 2013. Photo © Paolo Salcido (www.salcidoarts.com) reprinted with permission
taking an annual ‘own risks’ coverage. All the previously listed treatments are covered, and there is an opportunity for some extra coverage. We spend 11.9 % of our GDP on healthcare, the fourth highest in the world per capita (2011). It is a big blessing in The Netherlands that brain tumor patients can have the treatment they need, without having to worry about costs. There are a few trends developing in relation to brain tumors. For example, treatments are more and more concentrated in specialised (mainly academic) centres. In the near future it is anticipated that centres will need to treat a certain number of brain tumour patients, otherwise they will lose the right to perform the treatment. Moreover, brain surgery is already restricted to a limited number of centers. This means that people need to travel more, but on the other hand we think that the quality of the treatment improves with more experience and a team-approach. In the
bigger centres every patient is discussed in a multidisciplinary team. Most of the research projects are also undertaken in the academic centres. Sometimes it is possible to join a clinical trial. They are listed on a Dutch website (www.kankeronderzoek.info/). At the present time there are five trials related to brain tumors that have been activated here. One of these trials is sponsored by a pharmaceutical company.
Challenging situations and finding support There are still some troublesome situations. It still takes a relatively long time before a brain tumor patient receives the right diagnosis. An average general practitioner is likely to see only a few brain tumor patients in his or her entire career, and symptoms of a brain tumor can be vague. Unfortunately, despite recent improvements in treatments (partly through developments in technology), the prognosis has not
substantially improved in the last twenty years. But on the other hand, we think that quality of life for brain tumor patients has improved quite a bit. In The Netherlands there are several organisations involved in brain tumors. Each has more or less its own goal, with little overlap. The list below is not complete: www.stophersentumoren.nl www.hersentumor.nl n www.kwf.nl (the main cancer organisation in The Netherlands for all cancer types) n www.vokk.nl and www.kika.nl (children with cancer and their parents), n www.kanker.nl/organisaties/werkgroep- hersentumoren (Supportgroup Braintumors Cerebraal) n n
My colleague John de Bruin and I are members of the executive board of The Supportgroup Braintumors Cerebraal.
How we function as an organisation We support patients and relatives. About
five times a year we organise a meeting at which there will be a qualified speaker in the morning, and in the afternoon there are several group meetings for patients, partners, mixed-groups, sometimes for widows/widowers, and youngsters. Despite the increased publicity we have created, the number of people who visit our gatherings is more or less stable. But our Facebook group (search online for ‘Hersentumor Contactgroep’) and our brain tumor area on www.kanker.nl (a newish cancer-related community organised by the KWF) attract more and more members/attendees. Once a year, together with three other organisations, we run a public brain tumor day, where ten to fifteen top specialists in The Netherlands give presentations, and which is attended by about 250 brain tumor patients and their relatives. Our support group is financed by a government-fund, our members, and by the KWF. So far we do not need to organize charities to raise funds. We hope we’ve given you a brief view
Above: Jelle Jan de Vries (left) and John de Bruin (right)
of the situation in The Netherlands. Please don’t hesitate to contact us if we can help: Jelle de Vries (and John de Bruin), Supportgroup Braintumors Cerebraal, jelledevries@cerebraal.nl n
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Helping move forward our knowledge of brain tumors An interview with Dr Erwin G. Van Meir Professor in the Departments of Neurosurgery and Hematology and Medical Oncology at Emory University School of Medicine, Atlanta, Georgia, USA
IBTA: Where were you born and where did you receive your early education? Erwin Van Meir (EVM): I am a native of Mechelen, in the Flemish-speaking part of Belgium. When I was seven my family relocated to another “chocolate country”, Switzerland, where I received the rest of my early education in French. I completed my undergraduate degrees in Biology and Education at the University of Fribourg, then obtained my PhD in Molecular Virology at the University of Lausanne. IBTA: Is there anything in your family background or studies that led you to specialise in brain tumours? EVM: Not really. It was a chance event. After finishing my PhD in molecular biology working on vaccinia virus gene transcription (a kind of cowpox virus used to vaccinate people against smallpox), through a friend I heard that a clinician was looking for a molecular biologist to do cancer research at the University Hospital in Lausanne. This led me to meet with Professor Nicolas de Tribolet who was the chairman of the Neurosurgery Service and he gave me a great opportunity to start working on brain tumors and early freedom in directing my research. I was always very motivated in my research when I would enter the hospital on my way to the lab and see the patients who had scars on their head. While research can be frustrating at times, seeing the patients’ plight put it in direct perspective. My family has been affected by cancer, but this happened after. My mother was diagnosed with breast cancer in her mid-fifties and my father with bladder 96
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Above: Dr Erwin Van Meir
cancer in his early 70's. Fortunately, both are long-term survivors. I also lost a 49-year-old cousin to breast cancer on my mother’s side and one cousin on my father’s side has had bladder cancer, so there might be a cancer predisposition in the family. IBTA: What are your areas of research focus today? EVM: My research interest lies in understanding the molecular basis for human tumor development and how we can use this knowledge to devise new therapeutics that will improve patient survival. We examine how genetic alterations and hypoxia induce changes in cell biology that promote tumor formation with particular emphasis on heterotypic cell signaling, including tumor angiogenesis. We are currently studying how the p53 pathway controls intercellular communication and have recently
demonstrated new roles for p14ARF in regulating glioblastoma angiogenesis and thrombosis. We have a further interest in the function of the Brain-specific Angiogenesis Inhibitor 1 in the brain and its role as a new tumor suppressor in medulloblastoma. We have developed novel therapeutic approaches for cancer using oncolytic adenoviruses and small molecule inhibitors of the hypoxia-inducible factor pathway. Our drug discovery efforts are currently focused on gliomas, uveal melanoma and Ewing’s sarcoma, although they might be applicable to other cancers. We aim to translate these novel agents to testing in clinical trials with the hope of developing novel medicines for cancer treatment. IBTA: Among all the research and studies you have undertaken what do you regard as your most significant finding? EVM: This is a difficult question. I hope our contributions to the scientific literature have helped move forward the knowledge on brain tumors. It would be especially satisfying to me if any of what we did had an impact in improving patient survival. That is something I would call significant. I hope that our drug discovery program will lead to a candidate drug that can be tested in a clinical trial. We were also fortunate to be able to contribute to The Cancer Genome Atlas (TCGA) for glioblastoma and this molecular profiling of human tumors has already had a significant impact on our understanding of the disease and identification of novel targets, and should accelerate the discovery of new therapies.
From the July 2013 IBTA E-News
Above: Dr Van Meir (middle of photo, fifth from left) with a group of fellow kayakers from the Van Meir and Dan Brat laboratories who don’t mind getting their feet wet
IBTA: You edited a significant book "CNS Cancer: Models, Prognostic Factors and Targets (2009)". Has the increase in digital publishing affected the relevance of the traditional text book form in oncology studies? EVM: I was approached by Springer (a research publisher) to edit a book on brain tumors. While initially reluctant, I thought that I could put together some interesting content focused on tumor biology and animal models that was not typically covered in edited brain tumor books that usually have a strong emphasis on diagnosis and treatment. I was fortunate that over 100 colleagues accepted an invitation to participate and hope this text is useful to the community. It is available both in print and in digital form. I hope chapters in edited book series will soon become accessible through PubMed searches so more researchers can get easy access to the interesting content prepared by the authors. IBTA: Where do you anticipate that useful progress will be made in treating glioblastomas? EVM: A few years ago I wrote a lay review article on this topic with some of my colleagues (Van Meir et al, 2010, CA Cancer J Clin 60; 166-193). The idea was to provide a “vision 2020” as to where we would be by the year 2020. Of course, making predictions with a highly challenging disease was daring, yet I believe 97
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we are on our way to realizing some of them. Digitally assisted pathology and vastly improved imaging methods are available today to facilitate diagnosis, surgery and precision radiation therapy. Blood and cerebrospinal fluid (CSF) are being experimentally characterized for biomarkers and hopefully these will soon guide therapeutic response. We are about at the point where each patient will have their complete tumor genome sequenced so that more personalized therapies can be applied. Pharma’s armamentarium of targeted agents is growing continuously so this is on the immediate horizon. I am very optimistic that with these tremendous advances we will soon identify new therapeutic combinations for glioblastoma that will increase patient survival to three to five years. This is still no cure, but it will be a major improvement over the current situation and will set the stage for further progress. The article is freely available online at http://onlinelibrary.wiley.com/doi/10.3322/ caac.20069/abstract IBTA: How do you relax? EVM: Sailing is one of the most relaxing activities I know, although I enjoy skiing, reading a good book, watching a movie or simply spending leisure time with my family. I also enjoy traveling and discovering new cultures and landscapes. Unfortunately, most of my travel lands me in a dim conference room in a hotel… n
Humour and brain damage: A 44 year-old Scottish journalist launched a blog “Hole in The Head” in 2011 where he chronicled with humour and wit his journey with a brain tumour. He passed away in June 2013. In his last entry on 13 April he wrote: “Cancer death can be so cruel and undignified. At least with glioblastoma it seems that there is no pain, no suffocation, no pneumonia, no dwindling out of personality into dementia. Eventually the tumour fatigue takes hold and you simply sleep it away. But until then, I fully intend to enjoy myself as much as I can. I will remain me until the end, and I will not waste that time on self-pity and fear. And I will fight with every resource at my disposal. I have a strong mind, and I'm not planning on going anywhere gently.” He had commenced that day’s blog with a sarcastic comment about plastic shopping bags: “I'm keeping out of supermarkets. Two quid for a bag for life? If I'm going to spend that kind of money on a plastic carrier, I expect it to last past the autumn.”n
From the December 2013 IBTA E-News Tumor cluster: From time to time claims of a geographical brain tumor cluster arise. The latest suggestion is for the small city of Moorpark, near Los Angeles, whose residents have approached consumer advocate Erin Brockovich to help them … Residents in the small Italian town of Acerra, near Naples, also report an unusual incidence of paediatric brain tumours but blame it “on the [alleged] rogue dumping of toxic chemicals in the countryside by the Camorra crime syndicate”. n
Brain Tumour Foundation (Cayman Islands) “The Forgotten” By Brenda J. Archer President, Brain Tumour Foundation (Cayman Islands)
THE vision for this foundation started with a personal experience and several other experiences subsequently. After six-and-a-half years of research on brain tumours, and maintaining constant communication with my neurosurgeons, it became apparent that this vision needed to be put into action, so from there, it was decided that the Brain Tumour Foundation (Cayman Islands) “The Forgotten” would be formed. February is our month of Awareness and Observance; our colour is orange.
Above: Brenda J Archer, President of the Brain Tumour Foundation (Cayman Islands)
events in the Cayman Islands with a view to educating the community; n to promote high standards of medical care in the Cayman Islands as it relates to
the detection, intervention and treatment of brain tumours; n to provide locally available emotional support to patients and their immediate families through professional counselling, therapy, support groups and otherwise; n to oversee and regulate local public awareness events and public campaigns and seminars; n to promote and govern Caymanian participation in both local and international medical professional events relating to the detection and treatment of brain tumours; and n to promote, arrange and offer financial assistance, if and when possible
Some of our short term goals are: To expand the Foundation by setting up various committees, increasing our number of volunteers and sponsors; n
Our logo: We have been asked about our logo. The significance of it is that the ribbon is turned the other way. This symbolizes two hands giving thanks. The flames symbolize eternal hope for all. We would like to thank Mr. Wayne Armond for his contribution with the art work which was modified and now has become our logo.
Some of our main objectives are: to promote and raise awareness of brain tumours within the Cayman Islands; n to raise awareness of early detection; n to educate and inform the public of the benefits of early intervention and treatments of brain tumours and the residual affects; n to promote and publicize awareness n
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Above: At the launch of the Brain Tumour Foundation (Cayman Islands), back row, left to right: Ms Shari Whittaker (Cayman National), Mrs. Elizabeth Daniels (Assistant Treasurer), Ms Sandra Parchment (Secretary), Mr Albert Anderson, Ms Wendy Thomas. Front row, seated, left to right: Ms Patricia McField (Assistant Secretary), Mr Samuel Young (Vice President and Treasurer), Ms Brenda J Archer (President and Public Relations).
whilst always raising awareness, and have the support of their families and sharing knowledge and assisting those loved ones. in present need; Early detection will be possible, early n to eradicate the stigma and intervention can be done locally. discrimination that is attached to this Imagine! n illness and its residual affects The statistics are compelling and help to drive us with this cause. With perseverance, For further information, please see dedication, and local knowledge, we started www.btfcaymanislands.com the Caymanian way, reaching out and touching people, rather than waiting for them to come to us. These are a select group who already feel FORGOTTEN. This Foundation is designed solely for persons affected by brain tumours, whether benign or malignant. Our email address is: btfcaymanislands@gmail.com One of our ultimate goals is to set up a Neuroscience Department or wing right here in the Cayman Islands, with For further the relevant medical personnel always information contact : present and available. I know with the community’s support and help this chair@theibta.org can be done. Once this is established, patients can receive treatment at home n
Above: Neurosurgeon Professor Ivor Crandon, who was the keynote speaker at the launch and was inducted as an Honorary Member of the Cayman Islands Brain Tumour Foundation.
to realize more corporate sponsorship, as well as individual sponsors; n start the group support, therapy and counselling; n proceed with seminars and campaigns locally; n
Plan your 2014 “Walk Around the World for Brain Tumours” NOW!
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Hunting for better therapeutic targets By Maite Verreault, PhD GlioTex research team, Experimental NeuroOncology Team, Brain and Spinal Cord Institute Research Center, Paris, France TARGETED therapeutic agents constitute a promising approach for the treatment of glioblastoma patients. These new drugs are designed specifically to block deregulated molecular pathways in cancer cells without affecting healthy normal cells. This approach holds the promise of increased potency with fewer side effects to the patient compared with standard chemotherapies. Although targeted therapeutics have proven very effective in cancers such as breast cancer, there is still work to do in glioblastoma research to identify agents that will dramatically change the prognosis of this devastating disease.
are specific for the subtype of tumor they have. This approach to anti-cancer therapy is well implemented for breast cancer and constitutes a hopeful demonstration of the future of glioblastoma treatment. The same success stories exist for other cancers such as gastrointestinal stromal tumor, prostate, melanoma and lung cancer.
for patients having a glioblastoma with this modification, thus increasing their life expectancy after diagnosis. Multiple targeted therapeutic agents have been tested in glioblastoma patients with limited success so far. Bevacizumab is the most advanced targeted therapeutic agent in its development as an additional treatment option in newly diagnosed glioblastoma patients. Bevacizumab is targeted against the VEGF pathway that is involved in the construction of new vessels to irrigate the tumor, a process that is promoted by the tumor itself to access blood, nutrients and oxygen. Blocking of this process with bevacizumab showed some efficacy, particularly in patients with tumors that show high levels of VEGF. Despite the development of promising compounds for patients with tumors that carry those well-defined biomarkers, there is still no biomarker or target candidate for the majority of glioblastomas. Research must thus continue to improve our understanding of the biology of this cancer and refine our treatment options.
Biomarkers and targeted therapeutics in glioblastoma
The Growth Hormone Receptor as a candidate for targeted therapeutics
To date, one biomarker is interesting and might soon be used in the clinics for glioblastoma, and it is the presence of a modification on the tumorâ&#x20AC;&#x2122;s DNA, termed MGMT promoter methylation, that inhibits the expression of the gene MGMT. This gene is responsible for repair of DNA damage induced by chemotherapy agents such as temozolomide. When MGMT is suppressed, the tumor is no longer able to repair damages on its DNA induced by chemotherapy and will thus be more vulnerable to temozolomide therapy. Studies show that the response rate to the standard treatment (temozolomide combined with radiation) is doubled
Our laboratory is interested in identifying new therapeutic targets in glioblastoma. Recently, we found that the expression of the Growth Hormone Receptor (GHR) is increased in a subset of tumors. GHR is normally present on many cells of the body and acts as a receptor for the Growth Hormone (GH). GH is secreted by the brain pituitary gland in a pulsatile manner, mainly during sleep. The binding of GH to its receptor promotes cell growth and division and, consequently, the development of organs as well as the regulation of metabolism. A deficiency in the GH/GHR pathway often manifests in children as growth failure or short stature (proportional dwarfism). On
Above: Dr Maite Verreault
A success story: breast cancer Breast cancer research has been a dynamic and fast-evolving field over the last decade, with close to 19,000 scientific publications this past year. This effort has led to the identification of biomarkers that help predicting tumor response to treatment and, therefore, guide the choice of therapy. Biomarkers can be defined as characteristics that are common to a group of tumors within the same histo-pathologic class e.g. breast cancers. It was thus established that breast cancer tumors with high levels of the estrogen receptor (ER) respond better to tamoxifen, an ER antagonist. Tamoxifen reduces mortality rate by approximately one-third in women with ER -positive tumors, and outcome is even more favorable if tumors also show high level of the progesterone receptor (PgR). High expression of Her2 receptor, on the other hand, is predictive of response to Her2 antagonists such as Herceptin or Lapatinib. Identification of such subtypes of tumors constitute the basis for what is termed â&#x20AC;&#x153;personalized medicineâ&#x20AC;?, where patients are given targeted therapeutic agents that 100
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the other hand, excess of GH can result in acromegaly, or gigantism, a syndrome characterized by the thickening of jaw bones and increased size of fingers and toes. Inside normal cells, the GH/GHR pathway activates molecular pathways that are also activated in cancer cells. However, in the context of healthy tissue, this process is tightly regulated. An increased GHR expression in cancer cells could be associated with a deregulation of this pathway and it is therefore not so surprising that such deregulation is involved in the excessive growth of glioblastoma cells. Interestingly, we also showed that abnormal GHR expression is associated with higher GH concentration in the plasma of these patients, supporting a role of GH/ GHR pathway in growth of glioblastoma cells. Eventually, it might even be possible to detect GHR-positive tumors through a simple blood test. Further studies on the role of this pathway in glioblastoma are currently being conducted in our laboratory. Discussions have also been initiated with partners in
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the pharmaceutical industry to develop inhibitors of this pathway that could then be used to treat patients with this type of glioblastoma.
Dividing to conquer Research efforts like this one represent well the challenging approach of personalized medicine. Researchers and physicians are no longer fighting one cancer but several within the same pathological group, each requiring its own weapon. It is hoped that, as it was achieved in other cancers such as breast, gastrointestinal, prostate and lung cancer, this strategy will translate into improved therapeutic outcome for glioblastoma patients. n
Raise awareness of the challenges of brain tumours - plan an event for International Brain Tumour Awareness Week 2014 (26th October to 1st November)
From the July 2013 IBTA E-News Long term effects:: Parents of Canadian children treated for their cancer when young have formed a â&#x20AC;&#x153;Pediatric Cancers Survivorship Society of B.C. (British Columbia)â&#x20AC;? to advocate for better treatment for their now adult children who suffer from complex health problems. Some of these children were given heavy doses of radiation or chemotherapy when young but treatments have now changed following greater recognition of possible long-term effects. A doctor who sought government funding to identify past paediatric patients who should be warned about possible late effects has had his request rejected. n
Supporting people with a diagnosis of a brain tumor is my passion in life by Cindy Villarreal Nick’s Mom and founding President of the Nick Gonzales Foundation for Brain Tumor Research, Dallas, USA
NICKLAS Alan Gonzales loved and treasured his large family throughout his life and was blessed with many friends over the years. He was always so healthy as a child. He never even had an ear infection and only had a mild dose of chicken pox. Graduating from the University of Texas in Austin with a degree in aerospace engineering, he looked forward to a long career in the field that had fascinated him since childhood. When he was in college, he bought me a bumper sticker that said “My money and my son go to UT”. Upon graduation, he replaced it with one that said “My son IS a rocket scientist”. I was blessed with two wonderful, intelligent, compassionate sons, Nick and Marcus. Nick became an aerospace engineer and Marcus a therapeutic eye doctor. I was so proud of Nick at his graduation. Nick married and had two precious little boys. He looked forward to the days of taking them fishing, playing baseball - all the things a Dad does with his boys.
But life was about to change... Nick was just 28 when he suffered from headaches that got worse over time, then mood changes and a sense that something was wrong, but he couldn’t put his finger on it. Nick was diagnosed in November 2005 with a malignant brain tumor, a glioblastoma (GBM). He underwent emergency surgery at UT Southwestern in Dallas by one of the best neuro-surgeons in Texas, Dr. Bruce Mickey, followed by radiation and chemotherapy. 102
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Above: Nick (on left) with his brother, Dr. Marcus Gonzales, on a trip to New York City before Nick’s diagnosis.
Keeping a positive attitude and having a strong faith, he returned part-time to his career at Bell Helicopter in spring 2006 and to his volunteer activities with the Knights of Columbus and the Youth Group at his Catholic Church. Nick even accompanied his youth group to New Orleans in summer 2006 to join the massive efforts that had been underway for months, helping the city get back on its feet after Hurricane Katrina. They volunteered at one of the Catholic churches hit hard, replacing sheetrock, painting and more. Nick also worked with Habitat for Humanity on a project in Denton, Texas, while the catheter port was still in his arm. A second tumor was diagnosed in October 2006 and Nick lost his battle with recurrent GBM on the morning of December 5, 2006.
Our foundation The Nick Gonzales Foundation for Brain Tumor Research was established as a
501(c)(3) Public Charity in 2007 in honor of Nick. The Foundation’s mission is to increase awareness of the early warning signs of brain tumors and raise critical funds necessary for vital research on GBMs. The Foundation has also been proud to donate to The Legacy Brain Foundation to help cover the medical expenses of those stricken with brain tumors/cancer. When I first thought of setting up the Foundation, I researched organizations online and flew out to San Francisco to meet with the people at The National Brain Tumor Foundation in 2007. After meeting the team and seeing how focused they were, I asked what it would take to set up a research grant in Nick’s name. The answer was $25,000 and I told them we would raise and donate this amount every year. At the time, I had not yet filed the application for a 501(c) (3) public charity, but knew that would be critical to be taken seriously by donors and to gain corporate level donations. I
flew home to Dallas, worked with an attorney on the IRS forms, and that fall, we received approval. As I became more involved in the brain tumor community, I also learned of the hard work and dedication which Al Musella of the Musella Foundation has given to the brain tumor community. He established VirtualTrials.com and I have a deep respect for him.
Helping people in the Dallas-Fort Worth area At The Nick Gonzales Foundation we hope to make a real difference in the Dallas-Fort Worth brain tumor community. To date, over US $249,000 has been awarded in specific brain tumor research projects in Nick’s name. Funds have come from memorial donations, corporate sponsorships, revenue from recycling efforts, seven charity golf tournaments and fundraising dinners in the Dallas area, a ten-day-trip-to-Italy raffle, two “Brain Tumor Awareness Days” at the Texas Rangers Ballpark and other fund raising initiatives and activities.
We will be holding the 3rd Annual Brain Tumor Awareness Day on September 6, 2014 at the Texas Ranger’s Ballpark when the Rangers play Seattle. Both UT Southwestern and Baylor Healthcare in Dallas, two of the largest healthcare providers in the area, plus Grey Matters of Plano, a local support group, have pledged their support of this event. Wish us luck! Our goal is to sell over 2,000 tickets and get the Texas Rangers to put “Brain Tumor Awareness” on their official calendar like they do now for breast cancer.
Hope for the future As Nick’s Mom, I established the Foundation with a broken heart that will never be fully healed, but with the hope and prayer that the research the Foundation helps fund, opens the door to better treatment options and more effective therapies for all who are diagnosed. It is hard to cope with the loss of a child, a child at any age, but being proactive in Nick’s memory and supporting
those now with a diagnosis of a brain tumor, is my passion in life. I can’t bring Nick back, but I help establish a legacy for his sons, raising awareness and research funds to fight the brain tumor that took their Dad. The Foundation also supports survivors and their families. Nick’s sons are now twelve and ten years old and already have a succession plan in mind for the Foundation. As Jordan, the oldest, said: “Grandma, you’re old. When you leave us, Uncle Marcus will take over, then me, then Jonah, then my kids, then Jonah’s kids”. n
The IBTA seeks no financial contribution for a brain tumour organisation to be listed as a supporter for its major projects - we just want you to do something to raise awareness.
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The story of Brainwaves NI By Kate Ferguson, MBE Hon. Secretary, Brainwaves NI, Northern Ireland
BEFORE 1992 I had never met or known anyone with a brain tumour. My husband Billy and I had our life planned out. We would work hard and in the years to come we would reap the benefits. But in July of that year everything changed. Billy, a self employed quantity surveyor, was diagnosed with a choroid plexus papilloma. All that we knew and planned for was now gone. Billy went from being an independent man to a dependent one. This is not how we envisaged our life. This is not how it should have been but this was the journey we now found ourselves on.
Fulfilling a desperate need At that time there was no information or support available in Northern Ireland for brain tumour patients and their families who often face emotional, social and financial isolation. Through the local newspapers we invited fellow brain tumour patients and their families to meet. From the enthusiastic responses we met inspirational and courageous people and together we realised the importance of sharing our knowledge and experiences in order to help and support each other. We were united in the belief that together we could make a difference to the lives of others affected by this devastating condition. It was then we realised our 1% inspiration moment had been and gone and now it was time for the 99% perspiration! One of the most difficult things families face is looking at the exit sign of a hospital and wondering how are we going to cope, 104
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Above: Kate Ferguson, Secretary of Brainwaves NI in a dramatic hat by famous British milliner Philip Treacy which was later auctioned to raise funds for brain tumour research
what will the future hold and who will help us? It took time to set out our aims and objectives as a new charity, to consider what we should provide for patients and where to focus our efforts. However it was clear from the beginning that information, support, raising awareness and funding research was to be at the core of our charity. In 1994 Brainwaves NI received charitable status.
Growing over the years to provide support and information Brainwaves NI has grown as a charity, from our days when we had a handful of members meeting in the Royal Victoria Hospital, Belfast to now having almost 200 members with no geographic boundaries. To tackle emotional isolation, our patients and carers can call our dedicated phone line for advice, support and a listening ear.
We publish our own information leaflets, we have our own website and we can reach out to patients and families through social media and our mailing list. To prevent social isolation we organise membersâ&#x20AC;&#x2122; outings to places of interest, weekend breaks and host information evenings. To alleviate financial hardship we offer one-off financial grants. We have campaigned locally and nationally to raise awareness on all issues affecting the brain tumour community. This year we celebrate 20 years as a registered charity. We are a volunteer- led charity with no statutory funding and rely entirely on the friends of the charity for support. Membership of the charity is free and all outings and events are entirely funded by the charity.
Supporting research is a priority We in the brain tumour community know of the lack of funding for research
compared with other cancers and if we are to offer hope for patients now or in the future it is one of our priorities as a charity to support research. Brainwaves NI has raised funds for research into brain tumours at the Centre for Cancer Research and Cell Biology CCRCB, Queen’s University, Belfast. There has been a significant increase in donations since we made research funding a priority and, with encouragement from Brain Tumour Research (BTR – see www. braintumourresearch.org) of which we are a member charity our shared vision is that CCRCB becomes a Centre of Excellence for Brain Tumour Research. My husband Billy lost his brain tumour battle in 2006. I could never have imagined when he was first diagnosed that I would still be on a brain tumour journey 22 years later. I have travelled a road that initially I had no desire to be on but my life has been enriched because of it. I have met the most inspirational patients, families, neurosurgeons, scientists and charities sharing one goal: to find a cure and improve the outcome for brain tumour patients. I believe with one voice we are but a whisper but with many voices we will be heard.
A great honour I was honoured to be awarded an MBE (“Most Excellent Order of the British Empire”) by Her Majesty Queen Elizabeth in the New Year’s Honours List. The citation reads “Founder and Honorary Secretary, Brainwaves Northern Ireland. For services to people with Brain Tumours and their Families”. When I go to Buckingham Palace in June to receive my MBE I will think of all those in the brain tumour community whom we have lost and who I promised would never be forgotten. I will gladly accept this honour in their memory. n
For more information on Brainwaves NI, see www.brainwaves-ni.org
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Walking around Australia’s coastline for brain tumours
Above: Staff of the Multicultural Communities Council, Gold Coast, Australia with their pedometers
MULTICULTURAL Communities Council Gold Coast (MCCGC) which is located in Queensland, Australia, seeks to ensure that people from culturally and linguistically diverse (CALD) backgrounds have equal access to appropriate services for their ongoing health and wellbeing. On 1 January 2014 MCCGC inaugurated a healthy workplace program designed to have MCCGC staff benefit from a healthy lifestyle and to set an example for the wider community. They initiated a walking program in which staff wear pedometers to measure how far they walk as an exercise and have linked the program to the IBTA’s “Walk Around the World for Brain Tumours”. Specifically, the Council chose the walking activities in support of a staff member’s son who has an anaplastic astrocytoma (grade 3) brain tumour. A goal was set for the staff of the organisation to ‘walk around the coastline of Australia’ by the end of the 2014 calendar year. All staff are well on their way
to achieving that goal, with around 2,000 kilometres walked so far. This program contributes to making the Gold Coast in Australia more healthy and active in general. The program achieves greater staff connectivity and ultimately, contributes greatly to the IBTA’s goal of walking around the globe. Benefits include linking more closely with one another as a collective staff. Weekend walking groups have proven to be a fun way of getting to know one another in a relaxed environment. Staff are also becoming a more active workforce, and hopefully in doing so, inspire others to do the same. n
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Track the Tractor By Darren Hayes Florida, USA
LATE last year (2013) American Darren Hayes drove a green 1952 John Deere tractor from Florida to Michigan in the USA at an average speed of ten miles per hour. His unusual journey on this sixty-one year old tractor was prompted by the brain tumour experiences of two members of the same family, the Tassillos, who were friends of his. Darren wanted to raise funds and to raise awareness. His next journey will be on a 1948 Ford truck, commencing in July 2014, and traversing all 48 lower States in the USA. Darren takes up the story: “The Tassillo family of Clearwater, Florida, has been tested but continues to stay strong. Elyse Tassillo was diagnosed with inoperable brain tumors late in her battle. A couple of short months later she lost her fight. Six months later, her father Matt, who is my friend, fell victim to two inoperable tumors and is standing tall and staying positive through what he knows are his last days. As most friends would, I offered my help. Coming from a rural farm community and a background in marketing and advertising I devised a plan which was sure to raise attention. I explained to Matt that I wanted to raise $25,000 for his family but he preferred the money go to children's homes instead of to his family. At the end of August 2013 I mounted my 1952 John Deere tractor with a 16 foot trailer in tow with banners on both sides. Location: Florida. Destination: Michigan. The banners read "Trackthetractor", with the names of a few social media websites below. As passers-by witnessed this rolling billboard behind something that should have been parked in a museum and only traveling at ten miles per hour, it piqued an interest and the frenzy began. After the 24 day journey from Florida to Michigan, we had a hog roast where we raffled off my tractor. The total from 106
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Above: The 1952 green John Deere tractor in which Darren Hayes drove from Florida to Michigan (USA) to raise awareness of brain tumours.
donations and the raffle exceeded $31,000. We divided it equally between the Ronald McDonald House and Riley's Children's Foundation, both in Indianapolis. Even in his time of hardship, my hero Matt was more concerned with helping others than himself. Due to the success of the tractor trip we have formed a non-profit organisation in the name of Positive Seed Inc. The basis is to continue giving back as per Matt's request. Our goal this year is $250,000 for the same recipients. I am working on a 1948 Ford truck and will leave home on the 6th of July to cover all lower 48 States in 78 days, raising awareness and funds. Please "like" Positive Seed on Facebook to watch the journey. This Positive Seed event is named Follow the Ford…coming to a town near you!” n The IBTA wishes Darren all the best!
Above: “Elyse” is the name of a daughter of Darren’s friend who was diagnosed with brain tumours. Here, the tractor crosses the State line of Georgia on its journey.
Above: A “Titan” of the football field meets a titan of the farm.
Supporting organisations for the IBTA’s 2014 awareness-raising activities For an organisation or group to be a "supporter" of the International Brain Tumour Awareness Week and The Walk Around the World for Brain Tumours, the IBTA requires no financial commitment or fee to be paid to us by you. All we are asking for is your enthusiasm in supporting and promoting these events and for allowing us to add your name to our list of supporters. Organisations wishing to be listed as supporters of the IBTA's two awareness raising activities in 2014 should contact chair@theibta.org 42nd Vienna Scout Troop "St. Sebastian" (Austria) n Accelerate Brain Cancer Cure (USA) n ACT Brain Tumour Network (Australia) n Addi's Faith Foundation (USA) n Adult Brain Cancer Support Association of South Australia n AITC - Associazione Italiana Tumori Cerebrali ONLUS (Italy) n American Brain Tumor Association n Angels Among Us Walk Preston Robert Tisch Brain Tumor Center at Duke (USA) n Associazione Italiana di Neuro-Oncologia - AINO (Italy) n Astro Brain Tumour Fund (UK) n Australian Pituitary Foundation Ltd n b.r.a.i.n.child (Brain Tumour Research, Assistance and Information Network – Canada) n Belgian Brain Tumour Support (BBTS) n Brain and Spine Foundation (UK) n Brain Tumor Epidemiology Consortium n Brain Tumor Support Group of Northeast Florida (USA) n Brain Tumour Alliance Australia n Brain Tumour Association Western Australia n Brain Tumour Bank South West (BRASH) n Brain Tumour Foundation of Canada n Brain Tumour Foundation of India n Brain Tumour North West – BTNW (UK) n Brain Tumour Research (UK) n Brain Tumour Research Campaign – BTRC(UK) n Brain Tumour Research Group - University of Bristol (UK) n Brain Tumour Society (Singapore) n Braincare BC, British Columbia Cancer Agency (Canada) n Brainchild Foundation n BrainLife (Italy) n BrainLink Services (Australia) n Brains Together for a Cure (USA) n Brain Trekking (Hong Kong) n Brain Tumour Support (UK) n Brainstrust (UK) n Brainwaves (Northern Ireland) n Cancer Council Australia n Cancer Council Queensland Brain Tumour Support Group (Australia) n Cancer Research and Communications Organization (Kenya) n Cancer World n Capitulo de Neurocirugía Oncológica de la Federación Latinoamericana de Sociedades de Neurocirugía – FLANC (Latin America)) n Capitulo de Neurooncología y Base de Cráneo de la Asociación Colombiana de Neurocirugía - ACNCx n Catalan Institute of Oncology (Spain) n Cathean Limited Medical Writing Consultancy (UK) n Central Brain Tumor Registry of the United States (CBTRUS) n Central New Jersey Brain Tumor Support Group (USA) n Centre de Recherche Public de la Sante - CRP-Sante - Luxembourg n Centre for Analysis of Rare Tumors - CART-WHEEL.org (Australia) n CHANCE (CHildren AgaiNst CancEr) Association (Lebanon) n Charles Warren Brain Tumor Awareness Foundation Inc (USA) n Childhood Brain Tumor Association of Taiwan n Children's Brain Tumour Research Centre Nottingham (UK) n Clinica Chicamocha de Bucaramanga (Colombia) n Collaborative Ependymoma Research Network - CERN Foundation (USA) n Cullather Brain Tumor Quality of LIfe Center (USA) n East Kent Brain Tumour Support Group (UK) n Ed Evans Foundation (UK) n Edinburgh Centre for Neuro-Oncology (UK) n European Cancer Patient Coalition n European Federation of Neurological Associations (EFNA) n GEINO (Spanish Group for Investigation in Neuro-Oncology) n Gerry and Nancy Pencer Brain Tumour Trust (Canada) n Gray Matters Foundation (USA) n HeadSmart Be Brain Tumour Aware (UK) n Il Fondo di Gio ONLUS (Italy) n Irene ONLUS (ITALY) n Kings Health Partners Neuro-Oncology Service - Kings College Hospital and Guys and St Thomas Foundation Trust (UK) n Kortney Rose Foundation (USA) n Latin American Federation of Neurosurgical Societies FLANC n League Against Cancer, County PGZ-Rijeka (Croatia) n Legacy Brain Foundation (USA) n Levi's Star Children's Brain Tumour Charity (UK) n Liverpool Hospital Brain Tumour Education and Support Group (Australia) n Meagan’s Walk Creating a Circle of Hope (Canada) n Medical University of Vienna, Neurooncology Team (Austria) n Meningioma UK n Michael G. Belz Foundation (USA) n Monmouth and Ocean County Brain Tumor Support Group (USA) n Multicultural Communities Council Gold Coast (Australia) n Musella Foundation For Brain Tumor Research & Information, Inc (USA) n Naseem's Manx Brain Tumour Charity (Isle of Man) n National Brain Tumor Society – NBTS (USA) n National Hospital Development Foundation (UK) n Neurooncological Section of the Argentine Society of Cancerology n Neurosurgical Simulation Research Centre – Montreal (Canada) n Nick Gonzales Foundation for Brain Tumor Research (USA) n NOgIN The Neuro-Oncolgy Information Network (Australia) n Pediatric Brain Tumor Foundation (USA) n Pediatric Low Grade Astrocytoma Foundation (USA) n Philippines Brain Tumour Alliance n Robert Connor Dawes Fund n ROC On! - Run over Cancer (USA) n Romanian Society of Radiotherapy and Medical Oncology n San Diego Brain Tumor Foundation (USA) n Seve Ballesteros Foundation Brain Tumor Group n Society for Neuro-Oncology - SNO n Sontag Foundation (USA) n Southeastern Brain Tumor Foundation (USA) n Stichting STOPhersentumoren.nl (Netherlands) n Students Supporting Brain Tumor Research – SSBTR (USA) n Svenska Hjarntumorforeningen (Sweden) n Sydney Neuro-Oncology Group North Shore Private Hospital (Australia) n The Andrew McCartney Trust Fund for Brain Tumour Research (UK) n The Brain Tumour Charity (UK) n The Brain Tumour Charity - Ben Sambrook Fund (UK) n The Indian Society of Neuro Oncology - ISNO n Turkiye Beyin Tumoru Hasta ve Yakinlari Dernegi (Brain Tumour Patient & Caregivers' Association of Turkey) n Universidad de Santander – UDES (Spain) n Victorian Race Walking Club (Australia) n We Can Pediatric Brain Tumor Network (USA) n Worcestershire Brain Tumour Support Group (UK) n Zimbabwe Brain Tumour Association (ZBTA) n 107
Brain Tumour
Brain tumour organisations offering support and information* (*The IBTA cannot be held responsible for the content of other organisations’ websites included in the list below.) n Accelerate Brain Cancer Cure (United States)
n Angels Among Us
n Ben and Catherine Ivy Foundation
Accelerate Brain Cancer Cure has a singular focus - to
(United States)
(United States)
hasten the discovery of a cure for brain cancer.
The Angels Among Us 5K and Family Fun Walk is a
The objective of the US-based Ben and Catherine Ivy
www.abc2.org
celebration of life, strength, courage and commitment. This
Foundation is to cure brain cancer, while our immediate
volunteer organization was established to support the
goal is to improve diagnostics and treatment that will lead
n ACT Brain Tumour Network (Australia)
mission of hope at the Preston Robert Tisch Brain Tumor
to the doubling of life expectancy of patients with brain
The ACT BT support network meets on the 4th Sunday
Center at Duke University (Durham, North Carolina).
cancer within the next seven years.
of the month at Woden Southern Cross Club, Canberra.
http://dccc.convio.net/site/ PageServer?pagename=angels_home
www.ivyfoundation.org
Convened by Susan Pitt and MaryAnne Rosier under the
n Benny’s World
auspices of Brain Tumour Alliance Australia (BTAA).
Email secretary@btaa.org.au or call Susan Pitt on 0404255156 for more information. Freecall 1800 857 221 (free from landlines in Australia)
n Anna’s Hope
(United States)
(United Kingdom)
Benny’s World is a 501(c)(3) non-profit foundation
Anna’s Hope is a charity dedicated to giving hope to
established to fund research to find a cure for pediatric
children and young people diagnosed with a brain tumour.
brain stem tumors, specifically targeting Diffuse Intrinsic
n Addi’s Faith Foundation (United States)
It was inspired by Anna Olivia Hughes who tragically died
Pontine Glioma (DIPG). Benny Watters was diagnosed with
This foundation was created to help fund pediatric brain
from a brain tumour aged only three years and eight
a DIPG on January 18th, 2008 a few months before his 3rd
tumor research as well as provide financial assistance to
months and was set up by Anna’s parents, Rob and Carole
birthday. On September 8th, 2010 after 33 months battling
families who need help caring for their sick child.
Hughes and her five Godparents in 2006.
his tumor, our sweet Benny passed away. This foundation
www.addisfaithfoundation.org
www.annashope.co.uk
was established in March 2008 by his family.
n Adult Brain Cancer Support Association (Australia)
n ARTC Sud
The ABC Support Association is located in South Australia
(France)
n Beyin Tumori Tedavisi
and is focussed on giving support, encouragement, help
Ce site s’adresse à tous ceux qui souhaitent s’informer sur
(Turkey)
and guidance to adults diagnosed with brain cancer, their
les tumeurs cérébrales cancéreuses et sur la recherche
Turkish brain tumour support group.
families, friends and carers.
en neuro-oncologie et à ceux qui désirent faire progresser
www.beyintumoru.org
Contact: Andy Stokes, adultbraincancersa@gmail.com
cette recherche.
http://www.bennysworld.org/
www.artcsud.fr n Association Española de Afectados por Tumores Cerebrales - ASATE (Spain)
The Brad Kaminsky Foundation seeks to raise awareness
Spanish association for people affected by a brain tumour,
dedicated to providing support and resources to those
n Alinoe (France)
based in Madrid.
affected by this disease.
Alinoe (Association Lilloise de Neuro-Oncologie) is a local
http://www.asate.es/
www.tbkf.org
are wholly directed to support, information and advice for
n Association Léa Princesse Eternelle (France)
people with brain tumours and their families.
Léa est notre fille décédée le 10 juillet 2007 à l'âge de
n Brain and Spine Foundation (United Kingdom)
www.alinoe.asso.fr
5 ans 1/2 des suites d'une tumeur cérébrale récidivante
The Brain and Spine Foundation is a registered charity
A website dealing primarily with adult ependymomas.
https://sites.google.com/site/adultependymoma/
organisation (in the Lille are of north France) whose efforts
of brain tumors, to raise funds for research, and is also
: l’épendymome (cancer pédiatrique). A l'issue des deux
which is funded almost entirely by voluntary donations and
n Ali's Dream (United Kingdom)
années de maladie, nous gardons tous dans nos pensées
is committed to providing reliable information and support
A UK-based charity established to raise funds for research
l'image d'une petite fille souriante, joueuse, courageuse
to people living with neurological conditions across the UK.
into childhood brain tumours.
et généreuse. Afin de poursuivre son combat contre la
www.brainandspine.org.uk
www.alisdream.f2s.com
maladie, nous, parents de Léa, avons décidé de créer
n American Brain Tumor Association
l’association «Léa Princesse Eternelle».
n Brain Candy Project
http://leapourlavie.free.fr/
(United States) The Brain Candy Project aims to support the needs of
(ABTA - United States)
108
n Brad Kaminsky Foundation (United States)
n Adult Ependymoma (Web-based)
The American Brain Tumor Association was the first and is
n Astro Brain Tumour Fund
parents/guardians living in the hospital with their critically
now the only national organization committed to funding
(United Kingdom)
children who are recovering from brain tumours and other
brain tumor research and providing support and education
A UK organisation offering information, inspiration and hope
brain traumas.
programs for all tumor types and all age groups.
to all those living with a low-grade brain tumour.
www.braincandyproject.org
www.abta.org
www.astrofund.org.uk
n Andrew McCartney Trust Fund
n Australian Pituitary Foundation
b.r.a.i.n.child is a group of parents, family, and friends who
(United Kingdom)
The APF’s mission is to provide support to those who
have the common experience of caring for a child with
Funds scientific and medical research into the causes
have experienced pituitary gland conditions. We promote
a brain tumour or who are survivors. We are a volunteer
of brain tumours, and builds public awareness of the
awareness and disseminate information among the medical
organization providing support, education, and research
challenges of this disease.
community, public, pituitary patients and their families.
funding.
www.andrewmccartneyphotos.co.uk
http://www.pituitary.asn.au/
http://www.sickkids.ca/Brainchild/index.html
Brain Tumour
n b.r.a.i.n.child (Canada)
n Brainlife (Web-based)
n Brain Tumour Alliance Australia
BrainLife collects and offers to brain tumor patients,
Brain Tumour Alliance Australia (BTAA) is the only
n Brain Tumour Support and Information Across Yorkshire - incorporating Andrea's Gift
caregivers and medical/health professionals, references to
national brain tumour patient and caregiver organisation
(United Kingdom)
the latest published medical sources in the field of brain
in Australia.
Brain Tumour Research and Support across Yorkshire aims
(and other CNS) tumor research and treatment. Information
www.btaa.org.au
to provide a network of support across Yorkshire for brain tumour patients and their families. In 2003 Andrea’s Gift
is from peer-reviewed journals and medical databases. Some meeting proceedings are included too. The sources
n Brain Tumour Association Western Australia
registered as a charity with the sole aim of funding research
(abstracts, references and full-text articles) are republished
The Brain Tumour Association (Western Australia) is a
and providing improved patient support for anyone affected
with their original contents.
support group for patients and caregivers.
by a brain tumour in Yorkshire. The charity changed its
www.brainlife.org
braintumourwa@hotmail.com
name from Andrea's Gift to BTRS in 2011.
n Brain Science Foundation (United States)
n Brain Tumour Barcelona (Spain)
The Brain Science Foundation works to find a cure for
This Spanish brain tumour support group has been started
n Brain Tumour Support Group - Cancer Council Queensland (Australia)
primary brain tumors by advancing the understanding of
recently by Elisabeth Ros, a medulloblastoma survivor,
This brain tumour support service provides information
brain function and patient care. The foundation supports
with the collaboration of Fondo Alicia Pueyo (a fund for
about brain tumours and treatments; referral to support
cutting edge research in all areas related to primary brain
research on childhood brainstem gliomas).
and rehabilitation services as well as practical and financial
tumors, from developing and testing new treatments,
Contact Elisabeth Ros at elisabethrosmansilla@yahoo.es or Gloria Garcia at Gloria.Garcia@ohsjd.es
assistance; and regular meetings that give opportunities to
http://www.btrs.org.uk/
epidemiological studies, improvements in patient care, and basic research.
http://www.brainsciencefoundation.org n Brain Tumour Foundation of Canada
meet other people dealing with a brain tumour and hear health professionals discuss topics of interest.
http://www.cancerqld.org.au/page/need_support/ brain_tumour_support_service/
n Brain Tumor Awareness Organization
The Brain Tumour Foundation of Canada is the major
(United States)
non-governmental brain tumour organisation in Canada
The Brain Tumor Awareness Organization is an on-line
and aims to reach every person in Canada affected by
n Brain Tumour Support Group - St Thomas’ Hospital, London (United Kingdom)
resource for raising brain tumor awareness and gaining
a brain tumour with support, education and information
Everyone is welcome to join this brain tumour support
support.
and research.
group in London to be held at the Dimbleby Cancer Centre
www.braintumorawareness.org
www.braintumour.ca
in St Thomas' Hospital, London, UK. This group meets on
n Brain Tumor Fund for the Carolinas
n Brain Tumour Foundation of India
aimed at patients, families and friends of those diagnosed
(United States)
The Brain Tumour Foundation of India is a charity
with a brain tumour.
The Brain Tumor Fund for the Carolinas (BTFC), is a not-for-profit
concerned with improving the care and treatment
organization founded in 2003 by Charlotte neurosurgeon,
available to people with brain tumours and their families.
For more information contact Jamie Logan on 020 3229 4151.
Dr. Tony Asher and retired Bank of America executive, Jim
They work in partnership with other organisations to
Palermo. The Brain Tumor Fund for the Carolinas is dedicated
develop and support services for people with brain
n Brains Together for a Cure (United States)
to increasing public awareness of the impact of brain tumors
tumours. They hope to help all patients in and around
Our mission is To promote awareness of brain tumors and
and to providing support for the development of treatment
Bombay and expand their services to involve the
the need for effective treatments.
strategies and cooperative biomedical research related to brain
whole country.
http://www.brainstogetherforacure.org/
tumors in the Charlotte region.
www.braintumourindia.org
the first Monday of each month (see dates below) and is
n brainstrust (United Kingdom)
http://www.btfcnc.org/about/overview.cfm n Brain Tumour Ireland
brainstrust is a UK based brain cancer charity and a
n Brain Tumor Resource and Information Network – B.R.A.I.N. (United States)
The goals of Brain Tumour Ireland are : to raise awareness
community, which supports thousands of people across the
of and promote education about brain tumours; to
country who are affected by brain cancer. We work to help
Brain Tumor Resource and Information Network (B.R.A.I.N)
provide information and support to brain tumour patients
patients and carers regain control, and be confident that they
is a volunteer non-profit 501(c)3 organization dedicated
and their families/friends; and to promote and fund
are working towards the best outcome for their situation.
to improving the quality of life of brain tumor survivors,
medical research on the topic of brain tumours in Ireland
http://www.brainstrust.org.uk/index.php
increasing public awareness, and raising funds to aid in
and abroad.
research to eliminate the disease. They are based in the
http://www.braintumourireland.com/bti/
www.brainsite.org/index.html
n Brain Tumour Research
Brainwaves offer the opportunity to meet other people with
(United Kingdom)
similar experiences and to find out information about all the
n Brain Tumour Action (United Kingdom)
Brain Tumour Research specifically funds brain tumour
issues relating to brain tumours.
Based in Scotland, Brain Tumour Action aims to provide
research at UK centres to accelerate progress and improve
Email: audrey.hopwood@uhl-tr.nhs.uk
information, support and counselling to brain tumour
patient treatments and outcomes.
patients and patients’ friends and families.
www.braintumourresearch.org
www.braintumouraction.org.uk
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n Brainwaves Brain Tumour Support Group (United Kingdom)
Richmond, Virginia area.
n Brainwaves NI (Northern Ireland) Brainwaves NI provides support and information to those
n Brain Tumour AhoyHoy (Australia)
n Brain Tumour Support (formerly Hammer Out)
Brain Tumour Ahoy Hoy's mission is to provide information,
United Kingdom)
support and awareness for patients, friends and family who
Brain Tumour Support is dedicated to supporting patients,
n BrainWorks
have or have previously had a low grade brain tumour. Let
families and friends affected by any type of brain tumour
Brain Works is a UK project providing support, resources
us provide you a safe harbour to drop anchor, where you
diagnosis in the South West and Midlands area of the
and information for long-term survivors of a brain tumour;
can laugh, cry and just be yourself.
United Kingdom.
helping patients live their life, rather than just exist.
http://www.braintumourahoyhoy.org/
http://www.braintumoursupport.co.uk/
http://brainworks.org.uk/
Brain Tumour
people affected by a brain tumour, their families and carers.
www.brainwaves-ni.org
n Brian Bedell 2 Young Foundation
n Charles Warren Brain Tumor Awareness Foundation
n Ed Evans Foundation
(United States) The 2 Young Foundation was founded in 2004 by Brian
(United States)
The Ed Evans Foundation, in memory of 27 year old Ed
Bedell and continues to grow each year in his honor. 2YF is
The Charles Warren Brain Tumor Awareness Foundation,
Evans who passed away in 2007, is based in Wales, UK,
a non-proft (501c3) charitable organization that is dedicated
based in Georgia, USA, seeks to "significantly raise
and raises funds for cancer and brain tumour charities.
to caring for families and patients affected by brain tumours,
awareness of the disease of brain tumors so that a cure
www.edevansfoundation.co.uk
connecting communities to generate public awareness, and
can be found more quickly". It directly supports the Preston
committing funds to further research in curing this disease.
Robert Tisch Brain Tumor Center at Duke University.
n Ellie Savage Memorial Trust (United Kingdom)
http://www.2yf.org
www.charleswarrenfoundation.org
The Ellie Savage Memorial Trust has been founded to help
n British Acoustic Neuroma Association - BANA
n Charlie's Challenge
cancer or a brain tumour by providing financial support.
(United Kingdom)
(United Kingdom)
https://www.facebook.com/elliestrust
BANA is organised and administered by people affected
Charlie’s Challenge is a UK-based charity which raises
by acoustic neuroma; is a registered charity and exists for
money to finance urgently needed research into children’s
n Emory Brain Tumor Support Group (United States)
mutual support, information exchange and listening.
brain tumours.
The Emory Brain Tumor Support Group (Georgia, USA)
www.bana-uk.com
www.charlieschallenge.com
provides an opportunity for information-sharing and support
n BT Buddies
n Childhood Brain Tumor Foundation (United States)
malignant, benign or metastatic.
(United Kingdom)
The CBTF’s mission is to raise funds for scientific research
www.neurosurgery.emory.edu/BTSG/contact.htm
A national charity committed to providing information and
and heighten public awareness of brain tumours and to
support to anyone affected by a high grade brain tumour
improve prognosis and quality of life for those who are
n Ependyparents
in the UK.
affected.
The Ependyparents online support group is a private email
www.btbuddies.org.uk
www.childhoodbraintumor.org
list for parents of children with ependymoma. We are a
n BT Survivor group
n Childrens Brain Tumor Foundation
on behalf of our children who are too young to make
(Web-based)
(United States)
decisions. Group communication is by a private email
A site dedicated to discussing survivorship, treatment
The NY-based CBTF, founded in 1988, seeks to "improve
list hosted by T.H.E. BRAIN TRUST, a 501(c)(3) nonprofit
options available now and those options on the horizon
the treatment, quality of life and the long term outlook for
organization specializing in internet based and patient
that show promise.
children with brain and spinal cord tumors ..."
oriented brain tumor support groups.
www.btsurvivor.com
www.cbtf.org
http://braintrust.org/groups/ependyparents/
n California Brain Tumor Association
n Chris Elliot Fund for Glioblastoma Brain Tumor Education, Awareness, Advocacy and Research
n Epidermoid Brain Tumor Society
(United States) The California Brain Tumor Association is dedicated to
(United States)
support, information exchange and a connection with
advancing brain cancer research efforts, employing the
The Chris Elliott Fund for Glioblastoma Research (CEF) is a
others in similar circumstances by support group interaction.
precautionary principle, outreach, and education.
non-profit organization that raises funds specifically aimed
http://epidermoidbraintumorsociety.org/
http://www.cabta.org/
at ending brain cancer through education, awareness,
(United Kingdom)
families living in East Anglia (UK) who have a child with
among patients diagnosed with a brain tumor, be it
group of parents looking for knowledge and information
n Central Brain Tumor Registry of the United States
The Epidermoid Brain Tumor Society provides mutual
advocacy and research.
n Fitzy's 5 km Run/Walk (United States)
www.chriselliottfund.org
This annual run/walk raises funds for brain tumor
The Central Brain Tumor Registry of the United States,
research and support activities in honour of 20 year old
CBTRUS, is a not-for-profit corporation committed to
n Clowns in the Sky (United Kingdom)
Lauren M Fitzgerald who passed away in 2005. Funds
providing a resource for gathering and disseminating current
Clowns in the Sky is a small, registered charity which
are administered through the Berks County Community
epidemiologic data on all primary brain tumors, benign
supports children with brain tumours and their families
Foundation.
and malignant, for the purposes of accurately describing
across England. They provide activity and portable sensory
http://bt-family.org/lauren/lauren.htm
their incidence and survival patterns, evaluating diagnosis
trolleys in oncology wards and shared-care units in many
and treatment, facilitating etiologic studies, establishing
hospitals.
n Florida Brain Tumor Association (United States)
awareness of the disease, and ultimately, for the prevention
http://www.clownsinthesky.org/
Our mission is to provide hope, support and education to
of all brain tumors.
http://www.cbtrus.org/
brain tumor survivors, their families and friends; to conquer
n Cyprus Brain Tumour Association
brain tumors by funding research into their causes and
The CBTA is a brain tumour organisation for patients and
cures; and to enrich the quality of life of those touched by
families.
brain tumors.
Contact: masolomou@hotmail.com
http://www.floridabraintumor.com/homepage.htm
Meets in North Plainfield, New Jersey. For further information
n Deutsche Hirntumorhilfe eV (Germany)
n Fondo Alicia Pueyo (Spain)
see website.
A non-profit, German-based independent organisation,
This Spanish organisation was created with the mission
www.njbt.org/startCNJBTSG.cfm
which raises funds for the advancement of neuro-
to promote and support research on childhood brainstem
oncological research and the improvement of medical
tumors in order to develop new treatments and drugs
n CHANCE - Children AgaiNst CancEr
health care for brain tumour patients.
that may offer an early cure for all children affected by this
(Lebanon)
www.hirntumorhilfe.de
terrible disease.
n Central New Jersey Brain Tumor Support Group – CNJBTSG (United States)
www.fondoaliciapueyo.org/e_inicio.php
CHANCE (CHildren AgaiNst CancEr) is a Lebanese association
110
whose mission is to help Lebanese children with cancer or
n Dr Marnie Rose Foundation (United States)
blood disorders receive the best chance for cure and accept
The Dr Marnie Rose Foundation funds brain tumour
n GentleGiant (United Kingdom)
their disease.
research at MD Anderson in Houston, Texas (USA).
GentleGiant UK is a website devoted to pituitary tumours.
http://www.beirut.com/l/25407
http://www.runfortherose.com/?id=235
www.gentlegiant.co.uk
Brain Tumour
n Gerry and Nancy Pencer Brain Tumor Centre
n Hjernesvulstforeningen
n kartu lengviau (Lithuania)
(Canada)
(Norwegian Brain Tumour Association/NBTA)
The first and the only Internet page and support group for
The Gerry and Nancy Pencer Brain Tumor Centre is dedicated
The NBTA was created in 2009 and is a national group,
brain tumour patients and their carers in Lithuania.
to improving the lives of people living with brain tumours.
providing brain tumour patients, their families and caregivers in
www.kartulengviau.lt/joomla/pradzia.html
http://www.theprincessmargaret.ca/en/ PatientsFamilies/ClinicsAndCentres/BrainClinic/ Pages/about-us.aspx
Norway with information and support. Hjernesvulstforeningen
n Glioblastoma Fundation Michèle Esnault - GFME
er til både for pasient og pårørende. Vi etablerte i januar i år en
n Katie McKerracher Trust (United Kingdom)
kontakttelefon, der du kan snakke med folk som selv har eller
Katie's Trust wants to help children with a diffuse pontine
har hatt hjernesvulst, og med pårørende.
glioma by supporting patients and parents with finance and
www.hjernesvulst.no
advice, providing access to healing/alternative therapy and investigating/ supporting research. The Trust also provides
(France) Glioblastoma Fundation Michèle Esnault (GFME) is a French-
n HjernetumorForeningen (Denmark)
some financial assistance to dancers from the Scottish
speaking group for brain tumour patients.
We are an association of patients who have and have
Borders studying dance in higher education.
http://gfme.free.fr/
had brain tumor and their relatives. Here you have the
http://www.katiemckerrachertrust.co.uk/
opportunity to exchange experiences and get support from
n Glioma Online Support Group
others who are in similar situation.
(Web-based)
http://www.cancer.dk/hjernetumorforeningen/
n Kevin J Mullin Memorial Fund for Brain Tumor Research (United States) The Kevin J. Mullin Memorial Fund for Brain Tumor Research,
The international forum dedicated to those affected by low grade gliomas.
n Il Fondo di Gio ONLUS (Italy)
https://groups.yahoo.com/neo/groups/ gliomasupport/info or email glioma@hotmail.co.uk
Il Fondo di Gio ONLUS is an Italian brain tumour charity
run/walk from which the proceeds go to brain tumor research.
named in honour of Gio, the young son of Francesca
www.lemonhead.org/Home.aspx
based in the USA (Lancaster, Ohio), conducts an annual 5 km
Scropetta, who passed away from a brain tumour.
n Gray Matters Foundation
www.ilfondodigio.it
n Kortney Rose Foundation (United States) The Kortney Rose Foundation is a 501(c)(3) organization
(United States) The Gray Matters Foundation is a 501(c)(3) organization
n IRENE Onlus (Italy)
that is dedicated to raising funds to support research and
whose mission is to support and empower people
L'associazione IRENE Onlus è stata fondata alcuni anni fa
education related to the treatment and cure of pediatric
impacted by brain tumors through outreach, awareness and
per iniziativa di pazienti e familiari di persone affette da
brain tumors.
assistance programs.
tumori cerebrali. Obiettivo dell'Associazione IRENE è quello
http://thekortneyrosefoundation.org/
www.graymattersfoundation.com
di aiutare le persone che hanno ricevuto una diagnosi di tumore cerebrale e i loro familiari, ad affrontare i problemi
n Legacy Brain Foundation (United States)
n Grey Matters
sia di natura sanitaria che psicologica e sociale che questa
Our Mission is to support patients with brain or spinal cord
(Australia)
diagnosi comporta....
tumors in their communities through public awareness,
A new support group for those living with a benign and low
http://www.associazioneirene.it/
education, grants and services; creating a better quality of life for patients and their families.
grade brain tumour. Grey Matters is affiliated with Cancer
http://www.legacybrainfoundation.com/
(including Royal Melbourne and The Austin).
n Italia - Glioblastoma Multiforme - cancro al cervello (Web-based)
www.greymatters.org.au
Italian glioblastoma Facebook website.
n Levi’s Star (United Kingdom) Levi’s Star works to relieve the sickness and distress of
n Headcase
www.facebook.com/group.php?v=info&ref=ts&g id=42437508756
Council Victoria and associated with Melbourne Hospitals
children suffering from brain tumour within the Yorkshire Health Authority Cancer Centres.
(United Kingdom) Headcase raises funds to provide research to find a cure
n Japan Brain Tumor Association
for the most common and aggressive type of adult brain
Assissting brain tumour patients and families in Japan.
tumour called a Glioblastoma Multiforme or GBM.
Contact: otang@js7.so-net.ne.jp
http://www.headcase.org.uk/12.html
http://www.freewebs.com/levisstar/ n Making Headway (United States) Making Headway Foundation Inc. is a US (Chappaqua, NY)
n Japan Pediatric Brain Tumor Network
based not-for-profit organization dedicated to the care, comfort,
n Head for the Cure Foundation (United States)
Helping pediatric brain tumour patients and their families
and cure of children with brain and spinal cord tumors.
The Head for the Cure Foundation is a 501(c)3 nonprofit
in Japan
www.makingheadway.org
organization dedicated to raising awareness and funding in
www2.pbtn.jp n Mark Linder Walk for the Mind (United States)
the fight against brain cancer.
n Jeffrey Thomas Hayden Foundation (United States)
Mark's goal was to create a place where brain tumor
The Jeffrey Thomas Hayden Foundation is a registered non-
survivors and those still fighting the battle can come and
n Head Start (New Zealand)
profit 501c(3) US-based organization dedicated to helping
support one another in this battle...Mark founded the Walk
This organisation is intended to give sufferers in New Zealand
kids affected by cancer.
for the Mind in 2003. The Walk is a way to unite those
a “head start” when they are battling brain tumours.
www.jthf.org/default.asp
individuals and their families as well as to raise funds to
http://www.headforthecure.org/
www.headstart.org.nz/Site/Default.aspx
support brain tumor research in hopes to find a cure.
n Joe di Palma Brain Tumor Foundation (Canada)
http://www.marklinderwalkforthemind.org/
n Healing Exchange Brain Trust (United States)
The Joe Di Palma Brain Tumor & Pediatrics Foundation is
Provides support services for people affected by brain
dedicated to raising money for charities that are focused on
n mASS Kickers (United States)
tumors and related conditions.
helping adults and children with brain tumors.
mAss Kickers Foundation (MKF) is a 501(c)(3) non-profit
www.braintrust.org
http://www.joedipalmafoundation.com/index.htm
organization, which provides support and motivation to
n Hersentumor.nl (The Netherlands)
n Just One More Day (United States)
by tumors or cancer. MKF serves this mission through its
A patient-oriented organisation in the Netherlands whose
Just One More Day is committed to providing information and
website, fund-raising, and select events throughout the year.
aim is to prevent and cure brain tumours.
support for families affected by diffuse intrinsic pontine glioma.
Founded by brain tumor patient Dr Eric Galvez.
www.hersentumor.nl
www.justonemoreday.org
http://www.masskickers.org/
all newly-diagnosed patients, family, and friends affected
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Brain Tumour
n Matthew Larson Pediatric Brain Tumor Research Foundation
n Naseem’s Manx Brain Tumour Charity
n Pediatric Low Grade Astrocytoma Foundation
(United Kingdom)
(United States)
(United States)
Our aim is to support Island residents who are suffering
The US-based Pediatric Low Grade Astrocytoma
The Matthew Larson Pediatric Brain Tumor Research
with a brain tumour by way of giving them financial support
Association (PLGA) seeks to raise awareness, funding, and
Foundation seeks to raise the awareness and funds
and providing the latest information about brain tumours.
find a cure for this disease.
needed to overcome pediatric brain tumors and to help the
http://www.naseemsmanxbraintumourcharity. co.uk/
www.fightplga.org
children and families affected by them.
www.ironmatt.org
n Philippines Brain Tumour Alliance n National Brain Tumor Society
We are committed to improving the lives of those affected
n Matthew’s Miles
(United States)
by brain tumors. Educating and empowering the patients
(United States)
The National Brain Tumor Society is a nonprofit organization
and their families to improve the quality of their lives.
Our mission is to raise brain tumor awareness in
inspiring hope and providing leadership within the brain
the general public and to raise money for pediatric
tumor community. We exist to find a cure and improve the
http://www.facebook.com/pages/PhilippineBrain-Tumor-Alliance/139492062749160?sk=info
brain tumor research in hope of finding a cure for this
quality of life for those affected by brain tumors. We fund
devastating illness.
strategic research, deliver support services, and promote
n PPR Foundation
http://www.matthewsmiles.org/
collaboration.
(United Kingdom)
www.braintumor.org
We are committed to raise £1 million by 2015 to fund
n Meagan's Walk: Creating a Circle of Hope
Brain Tumour Research. We will support various research
(Canada)
n Neuro-Oncology Information Network - NOgIN
projects aimed at possible causes, cures, treatments or
Meagan's Walk, held annually on US Mother's Day, raises
(Australia)
effects thereof.
awareness about paediatric brain tumours and funds for
NOgIN is a not for profit organisation whose mission is
http://www.thepprfoundation.com/
research. Participants conclude the walk with a circle around
dedicated to reducing the physical and emotional impact
SickKids Hospital, Toronto, Canada.
associated with the diagnosis and ongoing treatment of
n ROC On! (United States)
www.meaganswalk.com
patients with a brain tumour. It aims to improve outcomes
ROC On! (Run Over Cancer) was developed by Laurie
for patient’s and their families living in western Sydney
Dangler, M.D., brain cancer patient, to organize people
n Meningioma Mommas (United States)
through the following activities.
to run or walk all or half of the Columbus Marathon and
Meningioma Mommas is a 24/7 online support group for
http://www.sydneybrainandspinesurgeons.com. au/nogin.html
raise funds for research at The Ohio State University's
all those affected by meningioma brain tumors. The nonprofit organization is also committed to raising funds for meningioma specific research.
n Newro Foundation
www.meningiomamommas.org
(Australia)
Arthur G. James Cancer Hospital.
www.facebook.com/pages/ROC-on-Run-OverCancer/310235803819
The Newro Foundation is a not-for-profit organisation
n San Diego Brain Tumor Foundation
n Meningioma UK
and registered charity seeking to develop new ideas and
(United States)
The only UK organisation for support and information
new research for new hope in the fields of neurology,
The San Diego Brain Tumor Foundation (SDBTF) was
for patients with meningioma tumours of the brain and
neurosurgery, spinal surgery and the neurosciences.
created to support the brain tumor community in San
spine. Thirty per cent of all primary brain tumours are
http://www.newrofoundation.com.au/
Diego (USA).
www.sdbtf.org
meningioma tumours.
www.meningiomauk.org
n Nick Gonzalez Foundation for Brain Tumor Research
n Sontag Foundation
n Michael G. Belz Foundation (United States)
(United States)
(United States)
This US group seeks to create hope, helping to live and
The Nick Gonzales Foundation for Brain Tumor Research
The Sontag Foundation, a private American foundation,
celebrate life after diagnosis. They educate, offer emotional
was established in 2007 in honor of Nick, a loving
seeks to improve the lives of brain tumor patients by
support and provide resources.
husband, father, son, brother, friend and so much more. The
funding brain tumor medical research. Their grants
www.mgbf.org/index.php
Foundation concentrates on raising public awareness of the
support the work of outstanding early career scientists
early warning signs of brain tumours and it also focuses on
in the US and Canada. They also assist a brain tumor
supporting brain tumour research.
patient support group in Jacksonville, Florida.
http://www.nickgonzalesfoundation.org/
http://www.sontagfoundation.com/
The Michael Quinlan Brain Tumor Foundation has merged
n Oklahoma Brain Tumor Foundation
n Sophie’s Wish
with the Brain Injury Alliance of Kentucky (BIAK).
(United States)
(United Kingdom)
www.biak.us
OKBTF is dedicated to meeting the needs of Oklahoma
Sophie’s Wish aims to raise awareness of brain tumours,
families, caregivers and patients affected by primary brain or
their symptoms, diagnosis and treatment. We also
central nervous system tumors.
campaign for and raise much needed funds for further
www.okbtf.org
research into brain tumours in order to help improve this
n Michael Quinlan Brain Tumor Program/Brain Injury Association of Kentucky (United States)
n Monmouth and Ocean County Brain Tumor Support Group (United States) The Monmouth and Ocean County Brain Tumor Support
112
desperate survival rate.
Group is a US-based (New Jersey) brain tumor support group.
n Pediatric Brain Tumor Foundation
www.njbt.org/startMOCBTSG.cfm
(United States)
http://sophieswish.org.uk/about-us
The Pediatric Brain Tumor Foundation works to eliminate the
n Southeastern Brain Tumor Foundation
n Musella Foundation – Virtual Trials.com - Clinical Trials and Noteworthy Treatments for Brain Tumors
challenges of childhood brain tumors. It is the world’s largest
(United States)
non-governmental source of funding for childhood brain
The SBTF is devoted to funding a cure for brain tumors.
(United States and Web-based)
tumor research. The PBTF also provides educational
Located in Atlanta, Georgia, this US based not-for-profit
Regarded as one of the most comprehensive brain tumor
resources and emotional support for brain tumor survivors
charitable organization provides support and outreach to
websites in the English-speaking language.
and their families.
brain tumor patients and their families.
www.virtualtrials.com
www.pbtfus.org/index.htm
http://sbtf.org/
Brain Tumour
n Spinal Cord Tumour Forum
n The Brain Tumour Charity (United Kingdom)
n We Can Pediatric Brain Tumor Network
(Web-based)
The Brain Tumour Charity funds scientific and clinical
(United States)
This is a website for people in the UK who have had,
research into brain tumour and offers information and
We Can is a (Los Angeles, USA) parent-initiated pediatric
or whose lives have been affected by, benign spinal
support to those affected. It also raises awareness and
brain tumor network that offers information and emotional
cord tumours.
influences policy. The Brain Tumour Charity’s aim is to
support to families with children who have brain tumors.
www.spinalcordtumour.org.uk
improve the understanding, diagnosis and treatment of
www.wecan.cc/We_Can/Home.html
brain tumours.
n STOPhersentumoren.nl
www.thebraintumourcharity.org
(The Netherlands)
n Werkgroep Hersentumoren vzw (Belgium)
A Dutch foundation established to raise public awareness
n The Cure Starts Now Foundation
Werkgroep Hersentumoren vzw - Study Group Brain
and funding for urgently needed brain tumor research to
(United States)
Tumours Belgium - is a multiprofessional group consisting
find the cause and cure for this disease.
The Cure Starts Now Foundation fights for the cure for
of patients and their relatives, physicians, caregivers in the
www.stophersentumoren.nl
children with brainstem glioma and cancer survivors
broadest sense of the word, neurologists, neurosurgeons,
everywhere.
nurses, psychologists, social workers, etc.
n Students Supporting Brain Tumor Research – SSBTR
http://www.thecurestartsnow.org/
http://www.wg-hersentumoren.be/site_en/ home.php
(United States)
n Thorne Mason Trust
Our mission is to provide education and leadership
(United Kingdom)
n Western North Carolina Brain Tumor Support
development to our youth, furnish a platform for them
The Thorne Mason Trust provides support to suit the
(United States)
to play a principal role in effecting positive changes in
needs of individuals who have been affected by a brain
WNCBTS is a US-based (Asheville, North Carolina) adult
their communities, promote awareness of how common
tumour or cancer in any way. These include services
support group for brain tumor survivors, their families,
brain tumors are as the leading cause of cancer deaths
such as gardening, cooking, cleaning etc. We are also
and caregivers.
among their peers and act as outreach to support affected
raising money to fund vital research into brain tumours.
www.wncbraintumor.org
individuals and their families.
The Thorne Mason Trust's long term aim is to open its
http://www.ssbtr.org/
own complementary brain tumour and cancer care centre
n Worcestershire Brain Tumour Support Group
based in Pembrokeshire.
(United Kingdom)
http://www.thornemasontrust.com/
The Worcestershire Brain Tumour Support Group (WBTSG)
n Svenska Hjärntumörföreningen (Sweden)
in the UK aims to offer information and support to anyone
The Swedish Braintumour Foundation is a brain tumour
n Tuberous Sclerosis Association
affected in any way by a brain tumour.
support and information group established in 2006.
(United Kingdom)
www.wbtsg.org
www.hjarntumorforeningen.se
The Tuberous Sclerosis Association promotes awareness, research and the best management of tuberous sclerosis
n Workgroup Brain Tumors Cerebraal
n Tali's Fund (Canada)
complex and supports all affected individuals and families.
(The Netherlands)
Tali's Fund was set up in remembrance of four-year-old
http://www.tuberous-sclerosis.org
Support group for brain tumour patients and caregivers
Tal Doron, who died from a brain tumor. The Fund raises
in Holland.
Contact: jelle_jan_de_vries@hotmail.com or john. de.bruin@postnl.nl
money for research projects at SickKids Hospital (Canada)
n Tug McGraw Foundation
and helps provide emergency funds for families with a child
(United States)
undergoing treatment.
The US-based Tug McGraw Foundation was established to
www.taldoron.com
"raise funds for pioneering brain cancer research, increase
n Zimbabwe Brain Tumor Association
public awareness of the disease, and support college
The Zimbabwe Brain Tumor Association (ZBTA) seeks to
n Tanner Seebaum Foundation (United States)
students who exemplify leadership and Tug’s inspiring 'Ya
campaign for widespread knowledge on brain tumors, to
Based in Centennial, Colorado, Tanner Seebaum
Gotta Believe' spirit".
improve the quality of life for brain tumor patients and
Foundation’s mission is to positively impact the lives of
http://www.tugmcgraw.org/
their caregivers in Zimbabwe, through access to better
children with tumors of the brain and spine through funding
care, improved facilities and treatment. They seek to
and supporting viable medical research that will lead to
n United Brain Tumour Support (Australia)
instil hope and strength through shared knowledge and
more effective treatment options and ultimately a cure.
Located on the Gold Coast, Queensland, Australia.
support. The ZBTA’s motto is: "achieving through hope
www.tannersfoundation.org
Contact Pete McLaughlin: (Australia) 0422 784 885
and strength".
n Team Billy (United States)
n Voices Against Brain Cancer (United States)
This organisation’s mission is to foster public support of a
Our mission is to find a cure for brain cancer by advancing
vision of a world where brain tumors no longer exist
scientific research, increasing awareness within the
as a deadly and debilitating illness. They also fund
medical community and supporting patients, their families
medical research.
and caregivers afflicted with this devastating disease.
http://www.teambilly.org/
http://www.voicesagainstbraincancer.org/
n Teenage Cancer Trust (United Kingdom)
n Walk for Kate and Blankets for Brains
The Teenage Cancer Trust (TCT) is a charity dedicated to
(United States)
improving the lives of teenagers and young adults with
Walk for Kate was founded in June 2010 as a nonprofit
cancer. They fund and build specialist units for young
501(c)3 corporation dedicated to finding a cure for
people in National Health Service hospitals. TCT also
brain tumors. Our goals include advancing community
provides specialist Nurse Consultants who provide clinical
awareness and raising funds through walking (and
care, develop research, deliver professional education and
running for those more adventurous among us) to further
ensure that standards remain as high as possible.
brain tumor research.
www.teenagecancertrust.org
http://www.walkforkate.org/about.html
zbta@mweb.co.zw
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Other organisations and sources of information* (*The IBTA cannot be held responsible for the content of third party websites included in the list below.)
n African Organisation for Research and Training in Cancer http://www.aortic-africa.org/
n Children's Brain Tumour Research Centre
n Aimee’s Army
n Collaborative Ependymoma Research Network
(United States)
(United States)
(CERN – United States)
www.jerrykline.com
www.aimeesarmy.com
www.cern-foundation.org
n Association pour la Recherche sur les Tumeurs Cerebrales
n Cure Brain Cancer Foundation
(United Kingdom)
(Australia)
www.jimmyteens.tv
(France)
http://www.curebraincancer.org.au/
(United Kingdom)
n Italian Association of Neuro Oncology (AINO) www.neuro-oncologia.eu
www.cbtrc.org n Jerry Kline
n JimmyTeens TV
www.artc.asso.fr/fr/index.htm n David M Bailey website n Associazione Italiana per i Tumori Cerebrali (AITC) www.tumoricerebrali.it
(United States)
www.davidmbailey.com
www.brt.org.uk
n ECCO (European CanCer Organisation) Patient Advisory Committee http://www.ecco-org.eu/PatientsAdvocacy/ Patient-advisory-committee.aspx
n Brain Tumor Center at Memorial Sloan-Kettering
n EudraCT – European clinical trials database https://eudract.ema.europa.eu/
n Brain Research Trust (United Kingdom)
n OrphaNet www.orpha.net n Otto Wong Brain Tumour Centre at the Chinese University of Hong Kong www.surgery.cuhk.edu.hk/btc n Preston Robert Tisch Brain Tumor Centre (United States)
www.cancer.duke.edu/btc
(United States)
www.mskcc.org/mskcc/html/70038.cfm n Brain Tumor Epidemiology Consortium (BTEC) www.epi.grants.cancer.gov/btec
n European Association of Neuro Oncoloy (EANO) www.eano.eu n European Association of Neurosurgical Societies (EANS) www.eans.org
www.bjnn.co.uk n BrizBrain and Spine (Australia)
www.brizbrain.com.au
n RARECARE (Pan-European rare cancer initiative) www.rarecare.eu n Society for Neuro-Oncology (United States)
www.soc-neuro-onc.org
n British Journal of Neuroscience Nursing (United Kingdom)
n Rare Cancers Europe (RCE) www.rarecancerseurope.org/
n European Cancer Patient Coalition (ECPC) http://www.ecpc.org/ n European Organisation for Rare Diseases (Eurordis) www.eurordis.org
n US National Institutes of Health – clinical trials database www.clinicaltrials.gov n Wagner-Jauregg Hospital (Austria)
n Canadian Brain Tumour Consortium www.cbtc.ca n Cancer World www.cancerworld.org/ n Cellular & Molecular Neuro-oncology Research Group University of Portsmouth (United Kingdom)
n European School of Oncology (ESO) www.eso.net/esonet/home.aspx?id_sito=1&id_ stato=1 n European Society of Medical Oncology (ESMO) www.esmo.org n Gliogene Study www.gliogene.org/
http://portsmouthcellularneuroscience.com/ n Center for Analysis of Rare Tumors (Cartwheel - Australia)
(GENO - Spain)
www.cart-wheel.org
www.geino.es/
n Centre for Minimally Invasive Neurosurgery
n Health EU portal – Cancer http://ec.europa.eu/health/major_chronic_ diseases/diseases/cancer/index_en.htm
www.neuroendoscopy.info
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n World Federation of Neuroscience Nurses (WFNN) http://www.wfnn.org/ n Zentrum für NeuroOnkologie, Universität Regensburg (Germany)
www.braintumor.de n Grupo Espanol de Investigacion en Neurooncologia
(Australia)
www.wagner-jauregg.at
INTERNATIONAL BRAIN TUMOUR ALLIANCE
Please join us in 2014!
and the
INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK
These two projects are being repeated for the eighth year in a row in 2014. We are currently compiling our list of 2014 supporting organisations. Contact chair@theibta.org to become a supporter. The IBTA requires no financial commitment from your organisation to be a supporter.
YOUR SUPPORT OF THESE TWO POPULAR GLOBAL EVENTS WILL FURTHER HELP BRAIN TUMOUR PATIENTS TO DEAL WITH THE CHALLENGES THEY FACE.
Attack: anyone Causes: unknown Screening: unrealistic Prevention: impossible Treatment: improving
Urgently needed: more research and support International Brain Tumour Awareness Week: 26 October - 1 November 2014
INTERNATIONAL BRAIN TUMOUR ALLIANCE
www.theibta.org
!
BRAIN TUMOURS