Sarcoma UK: Connect, Summer 2011 by Sarcoma UK

Connect info@sarcoma.org.uk www.sarcoma.org.uk

Summer 20 11

Providing information and support about cancers of soft tissue and bone

Launch celebrates Sarcoma Awareness Week

rofessor Sir Mike Richards, National Cancer Director, and Ciarán Devane, Chief Executive of Macmillan Cancer Support, joined Sarcoma UK’s trustees, staff and supporters to celebrate the launch of Sarcoma UK at the London Transport Museum.The event coincided with Sarcoma Awareness Week (13-19 June) and showcased an exclusive and inspiring film: ‘All in it together – living with sarcoma’ featuring sarcoma patients and documenting their journey. Continued on page 2

L-R: Lesley Abraham, Judith Robinson, Professor Sir Mike Richards, Ciarán Devane, Lindsey Bennister, Peter Jay, Dr Jane Barrett, Karen Delin, Roger Wilson CBE

Launch

Celebrating Sarcoma Awareness Week at the premiere of our new film

Research

Updates from the research grants that we awarded and latest research news

Community

Sarcoma help and support is here for you. Join our community

From the Chief Executive

Sarcoma UK’s chief executive, Lindsey Bennister, said: “It’s a very positive change that will put us in a strong position to build on the fantastic work already carried out by the Sarcoma Trust and Sarcoma UK over the last few years but from a new consolidated base of one single organisation.” Sarcoma UK originated as a company in 2003 formed by Roger and Sheelagh Wilson to provide information and support for patients with these rare cancers. Roger, who was diagnosed with soft tissue sarcoma in 1999 explained: “Even after two years I had never knowingly met another patient so when we started to offer information and develop new lines of contact for others it was also support for us.” By 2007 Sarcoma UK had contact with over 600 other patients and was working with national organisations such as NICE, the National Cancer Action Team, Macmillan Cancer Support and the National Cancer Research Institute. Sarcoma UK was also attracting donors wishing to support research into these rare cancers. With other patients and carers met through Sarcoma UK’s work, the Sarcoma Trust was founded as a registered charity to handle donations and fund research. By April 2010, as a result of increased financial support, a new business plan for the Sarcoma Trust had been developed and a professional team put in place. The implementation of the first stage of the business plan – consolidation of the two organisations (retaining the name Sarcoma UK) – started and was achieved by the following March. Sarcoma UK aims to achieve the best possible standard of treatment and care for sarcoma patients and their relatives in the UK through: scientific and medical research into • Funding causes and treatments support and information services • Delivering Raising awareness of sarcoma amongst the • public, healthcare professionals and policy makers Campaigning on behalf of sarcoma patients for improved treatment and care.

•

The Board of Trustees continue to provide a strong patient focus. Roger Wilson is Sarcoma UK’s Honorary President, and Professor Ian Judson from the Royal Marsden Hospital is Sarcoma UK’s Scientific/Medical Advisor. Connect

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A word from Sarcoma UK

elcome to Connect, Sarcoma UK’s new publication. This is the first edition produced under the new Sarcoma UK banner and it charts an exciting past few months for the charity. In this edition, you will be able to read about the developments of the charity, inspirational events that our supporters have done, as well as news about progress in research, treatments and care. Much is positive and I hope this gives you inspiration, courage and hope. However, whilst this edition has a celebratory feel to it, we must also remember the families and friends who have lost someone special because of sarcoma, and are trying to cope with the devastating effect this has. Many others of you are facing difficult decisions about treatment options, or coping with side effects of treatments and the impact this has on daily life. This edition of Connect tells you about the support that is out there for you – places where you can go physically or ‘virtually’ – to talk to others for emotional support, friendship, and to share experiences. I hope you find it useful. Best wishes Lindsey Bennister Chief Executive

What is sarcoma? Sarcomas are rare cancers that develop in the supporting or connective tissues of the body such as muscle, bone, nerves, cartilage, blood vessels and fat. There are around 3,200 new cases of sarcoma diagnosed each year in the UK. Sarcomas are some of the commonest childhood cancers. Most sarcomas (about 55%) affect the limbs, most frequently the leg. About 15% affect the head and neck area or are found externally on the trunk, while the remainder will be found internally in the retroperitoneum (abdominal area). Types of sarcoma Sarcomas fall into three broad categories:

• Soft tissue cancers • Primary bone cancers stromal tumours • Gastro-intestinal (a type of soft tissue sarcoma found in the stomach and intestines commonly known as GIST)

There are around 70 different sub-types of sarcoma within the three broad categories. These sub-types are determined by the tissue of origin (the tissue in the body where the tumour originally formed), genetic characteristics or by other molecular analysis undertaken by expert pathologists. The most common sub-types are: Soft Tissue Fibrosarcoma Myxofibrosarcoma Desmoid tumour Liposarcoma Gastrointestinal stromal tumour (GIST) Synovial sarcoma Rhabdomyosarcoma Leiomyosarcoma Malignant peripheral nerve sheath tumour (MPNST) Angiosarcoma Kaposi’s sarcoma (KS)

• • • • • • • • • • •

Bone Chondrosarcoma Chordoma Osteosarcoma Ewing’s sarcoma Giant cell tumour (GCT)

• • • • •

www.sarcoma.org.uk

Cover picture: Patricia Rayner

The Sarcoma Trust and Sarcoma UK officially joined together to become a new single charity for sarcoma patients, carers, and relatives in the UK, carrying the Sarcoma UK name with a new logo and brand.

Fundraising

Team Sarcoma scales new heights Vicki Smith, Sarcoma UK’s Head of Fundraising and Marketing, gives an insight into the charity’s first fundraising event – The Wainwright Bagger

ver a wet and windy weekend, ten Sarcoma UK supporters (and a dog) rose to the challenge of climbing seven named Wainwrights in the Lake District and the infamous Scafell Pike, the highest mountain in England.

11th June

The team met at Hawkshead Hostel on Friday evening and tucked into a hot meal before being briefed on their challenge ahead by the Mountaineer Guide, Ashleigh. Fittings and alterations were made to rucksacks, walking boots, hats and gloves all before the team snuck into their bunk beds ready for their early rise on Saturday.

Distance covered: 23km Time: 14hrs 30min Height gained: 1630m

After a hot breakfast, the team travelled to Coniston for a spot of stone-skimming and thought for their loved ones, followed by adopting a mantra of positive mental attitude. After much jelly-baby and energy bar consumption, the team successfully conquered many lakeland mountains (see panel) in fourteen hours, battling against poor weather conditions and lot gruelling uphill terrain. After an extremely long day, Team Sarcoma headed straight to their campsite near Wasdale for a well deserved shower and to rest their tired legs and treat their blisters!

1. Coniston Old Man (803m) 2. Brim Fell (795m) 3. Swirl How (804m) 4. Wrynose Pass (393m) 5. Crinkle Crags (860m) 6. Bowfell (903m) 7. Esk Pike (885m)

On the top of Scafell Pyke: (l-r) Wendy Moffatt, Lesley McAully, Femi Hwesuhunu, Lindsay Evans, Ashley St. John-Claire, Leigh Hibberdine, Stephanie Riordan, Lindsey Stone, Andrew Hitch

“With a of jelly-baby consumption, the team conquered many lakeland mountains.”

Sunday kicked off with a cup of tea and a group breakfast to set them up for their next huge challenge, a six hour walk up England’s tallest mountain, no adverse weather conditions were going to stop this bunch. www.sarcoma.org.uk

Wainwright Bagger

The big climb went via Brown Tounge, Hollowstones and Lingmell Hawse until finally, the group triumphed and reached the summit of Scafell Pike (977m). It was a momentous event (even if visibility wasn’t that spectacular!) and a personal achievement for all involved.

12th June • Scafell Pike (977m)

Distance covered: 8km Time: 6 hours Height gained: 920m

Leigh Hibberdine said: “The whole team who attempted the climb were encouraged and supported by Ash and it was a real achievement to get to the summit, particularly emotional for those who climbed in memory of loved ones.” After this, everybody met at the Castle Inn hotel for a warm-up in the sauna followed by a celebratory meal and raised their glasses to their fantastic accomplishment. As a group, they experienced many highs and lows, but never forgot the reason why they undertook this challenge and their motivations for completing this. Not only did they create a brilliant bond, they raised over £7,000 for Sarcoma UK which will help to fund further medical research into sarcoma.

We would like to thank each team member for being part of Sarcoma UK’s first fundraising event. A special thank you to Ashley and his dog, Bracken. We‘ve already started planning next year’s event! Connect

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Launch event

All in it together... Our launch event at The London Transport Museum showcased an exclusive documentary about patients with sarcoma. What motivated Papercut Pictures to make it for Sarcoma UK?

Pippa and Stacey are teenagers with an extremely rare form of sarcoma called paediatric and wildtype GIST (gastrointestinal stromal tumour – a type of soft tissue sarcoma found in the stomach and intestines). Living at different ends of the UK (southern England and Scotland), the girls and their families have formed a strong friendship based on their shared experiences and desire to raise the profile of this little-known cancer. The film gives an insight into their hopes and motivations, and shows the optimism of young people living with a rare cancer.

n 16 June 2011, Sarcoma UK’s inspiring new film All in it together – living with sarcoma was premiered at the London Transport Museum, as part of the celebrations to mark the launch of Sarcoma UK and Sarcoma Awareness Week. One hundred guests attended, including Sarcoma UK supporters, volunteers, funders, sarcoma clinicians and nurses, and allied healthcare professionals. Produced by Papercut Pictures on behalf of Sarcoma UK, the film is a poignant reminder of the sometimes devastating effects of this form of cancer. One of the stars of the film is Katherine Stittle, sister of James Stittle, the film’s producer. Sadly, Katherine died two weeks before the film’s launch. James said, “What she wanted more than anything was to raise awareness of sarcoma and this film is a fitting tribute to my sister and her courage in coping with sarcoma.” The film features real-life stories about people’s experiences of living with sarcoma. The footage gives great insight into what it is like to live with a rare cancer that noone understands or knows about, and the steps people take to live positively when faced with an uncertain future.

Stacey (left) and Pippa

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James Stittle, film producer, introducing the film and (inset) his sister, Katherine

The film is available on our website – www.sarcoma.org.uk – and is also available on DVD from Sarcoma UK’s head office. If you are planning an awareness event, the film will be a great way of telling people about the real impact of sarcoma.

Papercut Pictures pose on the other side of the camera!

www.sarcoma.org.uk

Launch event

Papercut Pictures is an independent film company dedicated to producing fresh and creative video content for charities, organisations and NGOs. For more information, contact: info@papercutpictures.com facebook.com/papercutpictures www.papercutpictures.com

• • • www.sarcoma.org.uk

Connect

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All pictures: Patricia Rayner

Guests mingle post-film to discuss issues surrounding sarcoma

Fundraising

Getting involved! Some of our fundraisers share their experiences to inspire you to join in our challenges and events 125 mile kayak challenge Jamie and I completed the Devizes to Westminster Challenge with an official time of 28:57.30 and it was quite honestly the most brutal and punishing thing that I have ever done in my life. We lost a lot of time due to some equipment failure through the night, meaning both Jamie’s and my backs were extremely sore, not so much when we were paddling but actually getting in and out of the boat, which added some two hours to our time. This was coupled with the River Thames being at its lowest in flow for many years, which equated for one of the highest dropout rates ever in the race’s history. All the clubs enter into a team event, which is made up of three crews and due to the number of people dropping out we were successful in winning the senior doubles team event, which is a great achievement for us and the club. We were 76th out of 97 crews that finished, with 36 crews pulled out on the way. In all categories, we came 90th out of 108 finishers and there were 53 crews that pulled out – effectively over a third pulled out during the day.

Jamie and Andrew before and after their kayak challenge

The course record for the 125 mile race is a blisteringly quick 15 hours. This record has been held for some 36 years. It was the year that it was expected to be broken with a crew of two world champions being put together; however the fastest time that they were able to produce was just over 18 hours, putting some three hours on top of their expected times, which gives you some indication of just how slow the River Thames was. For all of those who have sponsored us I would like to thank you once again for your very kind generosity in helping us raise £8,000. Andrew Brookes

Richard Sumner Memorial Golf Day

(l-r) ViceCaptain Steve Brookbanks, Mike Sumner and Captain Phil White at Fulford Heath Golf Club, Birmingham

We held another successful golf event in Richard’s memory and in aid of Sarcoma UK in June. It was mostly dry, but otherwise ideal golfing weather. The 64 golfers, family and friends had a competitive and very enjoyable day.

Don’t forget to let us know about your fundraising events

We raised £1,500 and have already set a date for next year – Friday 22 June 2012. Mike Sumner

Challenges & Events Skydives Various dates Take advantage of this once in a lifetime opportunity and jump for Sarcoma UK. If you raise the minimum amount of sponsorship, you get to dive out of a plane for free! Tandem Skydive: £395 Static Line Square: £360 Accelerated Freefall: £535

Running BUPA Great South Run 30 October 2011 We have 20 places in this running event with a fantastic atmosphere. Location: Portsmouth Registration Fee: £35 Sponsorship Level: £350 Distance: 16km

Running Virgin London Marathon 22 April 2012 We have one silver place in the largest public participation sporting event in the country. Location: London Registration Fee: £150 Sponsorship Level: £2,000 Distance: 42km

For further information about these challenge events, contact Vicki Smith, Head of Fundraising and Marketing, by email: vicki.smith@sarcoma.org.uk or phone: 020 7250 8271 Connect

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www.sarcoma.org.uk

Personal experience

Sarcoma brings together two long-lost friends After Hilly Cansdale bumped into an old friend, they had a lot to catch up about ... little did they know they had been living in the same small town, with the same rare sarcoma and a similar story to share

ack in 2002 I started a piece for Sarcoma Magazine with the words “I am a large woman.” This time I begin with “I live in a small town.” In January, 2002 I had a very large (14lb) liposarcoma removed leaving behind a ‘stump’ (in layman’s terms). Thanks to my brilliant surgeons, life continued and the years rolled on. They seemed to be ‘bonus years’.

a few little ‘friends’ which had grown nearby. When asked by those who were curious where the tumour was, I explained: “If you poked a knitting needle through your chest between your ribs, through all the organs there, and hit the spine – that’s where it’s growing.” It is unfortunately a horribly difficult place for my poor surgeon to reach. Luckily I was able to turn again to the same surgeon in Taunton, who ‘knew his way around’!

Then about three years ago I was out walking in the countryside and bumped into my friend, Priscilla Mills, walking her dog Hamish, and as I hadn’t seen her around for a few months I expressed surprise. “Oh, I’ve been ill,” she said. “I’ve had an enormous (1½ stone) liposarcoma removed and lost my left kidney!” We could hardly believe that in a town of just 12,000 people the two of us had shared this experience of a very rare tumour growing to such a size. Over the next three years we often met out walking. Then, in late autumn last year, she said: “Mine has come back.” At around the same time I had occasionally been feeling queasy. I suddenly realised that I had lost half a stone in weight – with no effort at all ... So I decided to drop a line to my surgeon telling him of this. Christmas and New Year came and went, during which I was also suffering from a pain in my right side. I had a really horrible cold, too, and felt quite ill for three or four weeks. In January, therefore, I followed up my earlier letter to the surgeon and the wheels were set in motion: a CT scan and PET scan, the latter showing up a few points of ‘activity’. The sarcoma had re-grown www.sarcoma.org.uk

Since the operation, friends and acquaintances in our small town have been following our joint progress and, I might add, been fantastically supportive with offerings of food (on a rota!) and care of all kinds. This is really the Big Society in action ...

Priscilla Mills (left ) and Hilly Cansdale and Hamish the dog

and, it seems, like the Hydra, if you cut off one head, two sprout in its place!

A month after the op I went to see the surgeon who told me that the tumour in the centre of my stomach area and the one on the left side had been removed. It will probably return, he said, but careful, frequent scanning and more surgery would ‘contain’ the beast. No radio, no chemo. Radiotherapy is apparently impossible to use near internal organs. Chemotherapy is (thankfully!) no use, either. Just as I was about to leave the consultation I mentioned the pain in my right side, still there after the operation. He suggested that I “pop along and have an ultrasound”.

“In a town of just 12,000, two of us have shared experience The radiologist, fully aware of the three different cancers I’ve of a very rare had since 1996, casually remarked tumour.” “Oh, you have a 2cm gall-stone

So, within a week of each other, my friend and I went into two different hospitals for our operations. Her sarcoma had sent a tentacle down into her thigh muscle – not good for walking, we both agreed. Mine had grown to the size of an orange, with

blocking your bile duct.” My husband couldn’t help laughing. Connect

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Research

Sarcoma UK research grants

Defects of DNA repair genes and cell cycle regulators as a predisposing cause of sarcomas

n 2009, Sarcoma UK awarded £255,000 in research grants – a significant financial commitment from a small cancer charity. Four projects were awarded funding for research that ranged from basic laboratorybased science through to qualitative research with patients. The grants that we have funded are:

Research team: Dr Karen Sisley, Dr Abdulazeez Salawu, Dr Martin Robinson (University of Sheffield) Funding: £75,790 over three years This is a basic science project, finding out more about how chromosome abnormalities in the nuclei of sarcoma cells might upset the regulation of cell turnover. If the researchers can understand more about this it might be an opening to developing new approaches to treatment. This project is in year two.

Identification of direct downstream targets of the PAX3-FOXO1 and MYCN proteins in alveolar rhabdomyosarcoma as potential therapeutic targets Research team: Dr Janet Shipley, Dr Zoe Walters, Dr Edoardo Missiaglia (Institute of Cancer Research, London) Funding: £23,266 for one year

A prospective observational study to evaluate the quality of life of patients with locally advanced and metastatic soft tissue sarcoma

Deaths from cancer in children are, thankfully, rare. However, a leading cause of cancer related deaths in children is rhabdomyosarcoma, a soft tissue sarcoma. More effective treatments are urgently required and Dr Shipley proposed that increased understanding of the underlying molecular mechanisms in development and spread of rhabdomyosarcoma would yield new angles for investigation.

Research team: Dr Julia Riley, Dr Claire Smith, Prof. Ian Judson (Royal Marsden Hospital) Funding: £126,409 over two years This project is in its final year. It is a clinical study that is not a trial but involves patients in order to look at the quality of life of patients being treated for advanced sarcoma. People with locally advanced or sarcoma that has spread, or whose sarcoma has recurred after surgery, may only be eligible for palliative treatment, so quality of life becomes the primary concern rather than defeating the sarcoma.

The project was successfully completed in February 2011, according to plan. They found some new gene targets which look as if they could be promising ‘ways in’ to researching new treatments. Whilst there is still a very long way to go these are now being investigated further in their laboratory or will form the basis of future research. In particular, she and her team were studying what can make rhabdomyosarcoma such an aggressive cancer. The results of this successful study are currently being prepared for publication. One of the genes identified is already under intensive investigation in order to develop a therapeutic approach against it (in collaboration with the Centre for Cancer Therapeutics at The Cancer Research Institute).

Developing a preclinical and clinical system for oncolytic virotherapy using isolated limb perfusion Research team: Dr Kevin Harrington and Dr Tim Pencavel (Institute of Cancer Research, London) Funding: £30,014 over 2 years

Currently in year two, this is an example of a translational research project, looking at ways to transfer results from the laboratory into a clinical trial for patients in a Phase 1 trial. They are developing a system for treating limb sarcomas using Isolated Limb Perfusion (ILP) as well as oncolytic virotherapy (anti-cancer viruses). They are hoping to use the results to move on to designing a Phase 1 trial. Connect

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Log on to the research pages on www.sarcoma. org.uk to find out more

Because the intention is palliation it is important to understand what determines the quality of life in these patients especially when chemotherapy will have side effects. In addition, the study will try to identify markers found in blood tests that might predict prognosis since this might help decisions on which treatment to use. If this is possible, chemotherapy could be avoided in people who will not benefit from it, which would improve their quality of life. This will help the development of clinical practice and also gather valuable data to aid health economic analysis of new treatments.

Sarcoma UK is currently putting in place new plans and processes to fund a further set of research grants in 2012. We are setting up a Research Advisory Committee which is an independent group of leading experts – scientists and clinicians – in the sarcoma research field who will advise the charity on the quality of the applications we receive, to ensure that we are funding the best projects. More information about our new grants management processes and the development of a new research strategy can be found on our website: www.sarcoma.org.uk under Research www.sarcoma.org.uk

Research

Clinical trials in sarcoma

hen the first Sarcoma UK newsletter was published in 2003 there were six clinical trials available in the UK for sarcoma patients: one each in Ewing’s sarcoma and osteosarcoma, one in GIST, and three in soft tissue sarcoma (two paediatric).

If you feel that a clinical study might be of value you should talk to your doctors. Our listing of studies does not include details of availability at which treatment centres, or of patient eligibility requirements. Your doctors can access this information.

Today’s list of open clinical studies numbers fourteen and a similar number are currently in development. It demonstrates a growth of interest in these rare tumours by the pharmaceutical industry, the availability of academic funding from new European sources for studies in rare cancers, and a strong UK commitment supported by the National Cancer Research Network to develop relevant UK trials.

For information on European clinical trials, see below.

European Union register of authorised clinical trials to appear online A new public website giving information on all authorised clinical trials being conducted in the EU has been launched. At any one time it is anticipated that it will have

Table 1. Clinical trials in sarcoma SOFT TISSUE SARCOMA VORTEX

Phase III randomised trial evaluating impact of changes in volume of post-operative radiotherapy on morbidity and limb function in adult patients with extremity soft tissue sarcoma.

VORTEX BIOBANK

Prospective sample collection for the VORTEX randomised radiotherapy trial in adults with extremity soft tissue sarcoma.

GeDDIS

Phase III prospective randomised controlled trial of gemcitabine+docetaxel compared with doxorubicin as first line treatment in previously untreated locally advanced, unresectable or metastatic soft tissue sarcoma. Available to teenage patients.

TRUSTS

A Phase III randomized study of trabectedin versus doxorubicin in first-line for patients with translocation-related sarcomas (TRS).

Axi-STS

Axitinib in patients with advanced angiosarcoma and other soft tissue sarcomas: a phase II open-label parallel-group (non-randomised) study.

CASPS

Phase II study of cediranib (AZD2171) in advanced alveolar soft part sarcoma.

PICASSO

Phase III randomised study comparing palifosfamide versus doxorubicin in first-line.

PAEDIATRIC SOFT TISSUE EpSSG RMS 2005

Treatment of children and young people presenting with non-metastatic rhabdomyosarcoma. The protocol contains a randomised trial for “high risk patients” and observational studies for patients categorised in other risk groups.

EpSSG non-Rhabdo

A trial looking at the treatment of children with non rhabdomyosarcoma soft tissue sarcomas. Open to adults aged up to 21.

BERNIE

Children <18 with newly diagnosed metastatic disease. Phase III randomised comparison of chemotherapy with/without bevacizumab.

BONE SARCOMA EUROEWING

Combination chemotherapy with or without peripheral stem cell transplantation, radiation therapy, and/or surgery in treating patients with Ewing’s sarcoma.

EURAMOS 1

A Phase III randomised trial of the European & American Osteosarcoma Study Groups – strategies for resectable osteosarcoma based on response to pre-operative chemotherapy.

OTIS

A Phase II study to determine the efficacy and safety of conventional dose oral treosulfan in patients with advanced pre-treated Ewing’s sarcoma.

GIST GRID

www.sarcoma.org.uk

Phase III randomised study using regorafenib in third-line for advanced GIST.

Connect

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Research

the details of up to 10,000 studies in all diseases.

has identified gynae sarcomas as an international collaborative research priority. A meeting took place in December 2010 which set up a structure to develop clinical studies, and a meeting in June 2011 has taken matters forward.

The main objective of the Register of Clinical Trials is to increase transparency and avoid duplication of trials. It includes clinical trials conducted by academic researchers and by the The focus is to develop “The pharmaceutical industry specific clinical trials in one or more EU Register’s main which can test new Member States. drugs to treat objective is to these rare and The Register includes increase transparency often aggressive information on the cancers. Some and avoid results of clinical trials. gynae sarcomas are duplication.” Results of all clinical hormone receptor trials – including trials positive, which means which ‘failed’ to achieve their that they can be treated desired objective or did not produce with drugs usually used to treat the expected results – are a valuable breast cancer. By developing source of knowledge, which patients combinations of these ‘aromatase and patient organisations are usually inhibitors’ with new genetically not able to access. targeted treatments, and with more traditional chemotherapies, it is The EU Clinical Trial Register is at: hoped that a breakthrough https://www.clinicaltrialsregister.eu in treating these sarcomas can be made.

Gynae sarcoma – an international priority A meeting between the UK’s National Cancer Research Network, the European Organisation for the Research and Treatment of Cancer, and the US National Cancer Institute

European Research Collaboration Five years ago two research collaborations in sarcoma were funded by the European Commission. As Conticanet and Eurobonet have now come to a conclusion, the Commission has agreed to fund a further five years of sarcoma research, the two collaborations merging as EuroSarc. The collaboration is led by Professor Jean-Yves Blay and thirty sarcoma research institutes around Europe are members, including centres in Oxford, Sheffield and London. The UK’s principal member is Professor Bass Hassan, from the Churchill Hospital, Oxford.

The collaboration is planning a number of new clinical trials, some in rarer sarcomas, many in collaboration with the European Organisation for the Research and Treatment of Cancer, so that its network of hospitals conducting clinical studies can make these new trials as widely available as possible. Connect

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Join the M

any sarcoma patients and carers have told us that they often feel isolated and alone. Some people have never met or spoken to someone else with sarcoma or another carer of a sarcoma patient. Help and support is here for you! Join Sarcoma UK’s online groups to talk to others, or go along to one of the sarcoma local support groups that meet regularly throughout the UK.

Online Sarcoma UK’s online support groups are there to give you regular contact when you need it with people who share and understand your experiences. Our groups provide you with the opportunity to talk to other patients and carers, learn more about sarcoma, and get support for the issues and challenges you are currently facing. The value of this community is that you can access it 24 hours a day, without having to leave your home. Sarcoma UK runs three online support groups for: • Patients – all sarcomas • Patients – with gynaecological sarcomas • Carers

How does it work? Sarcoma patients and carers talk to each other by writing email messages that are sent to all members of the group. Alternatively, you can send a personal email to individual members of the group and communicate directly with individuals. Sarcoma UK has a registration process and guidelines in place to manage and moderate the online support groups. These groups are only open to sarcoma patients and carers and all registrations are checked by Sarcoma UK. To find out more, visit the How We Can Help pages at www.sarcoma.org.uk

Join the community today! www.sarcoma.org.uk

Support groups

sarcoma community Scotland - Glasgow

Meets: Third Wednesday of every month, 2.30 – 4pm Venue: Maggie’s Centre, The Gatehouse, Western Infirmary,10 Dumbarton Road, Glasgow G11 6PA Dawn Currie, Sarcoma CNS - 0141 301 7599 Gillian Hailstones, Maggie’s Centre - 0141 330 3311

Newcastle and Tyneside

Meets: First Monday of every month, 7 – 10pm Venue: Education centre, Freeman’s Hospital Cuth Earl, Group secretary - 0191 520 1824

Manchester

Meets: Last Tuesday of Jan, March, May, Sept and Nov, from 5pm Venue: Manchester Royal Infirmary, Seminar Room 1 (adjacent to Ward 1) Helen Murray, Clinical Specialist Sarcoma Nurse (MRI) - 0161 276 6187 (Pager 07659 596823) Maxine Cumbo, Specialist Sarcoma Physiotherapist (MRI) - 0161 276 6845 Lena Richards, Specialist Sarcoma Physiotherapist (Christie) - 0161 446 3795 or 0161 446 3000 (Bleep 12539)

Sheffield (and surrounding areas)

Meets: Second Friday of Jan, March, May, July, Sept and Nov, afternoon Venue: Cancer Support Centre, 23 Northumberland Road, just behind Weston Park Hospital, Sheffield or Royal Hallamshire Hospital CNS Judy Darwent, North Trent Sarcoma Lead Nurse - 0114 2261436 CNS Anne French - 0114 2713478 CNS Maxine Eades - 0114 2265621 E: sheffieldsarcomasupport@gmail.com W: www.sheffieldsarcomasupport.org.uk

East Midlands (and eastern counties) Meets: Third Tuesday of every month, 5 – 7pm Venue: Helen Webb House, 35 Westleigh Road, Leicester, LE3 0HH E: emssg@live.co.uk

New groups Merseyside and Cheshire

Exeter

A new group that meets at the FORCE cancer centre in Exeter; for both sarcoma and melanoma patients, relatives and carers. Contact Sarcoma UK for more information on these new groups

Oxford (inc Thames Valley, south and parts of south west England) CRUK

A newly formed Sarcoma Support group for Merseyside and Cheshire met on 14th June during National Sarcoma Awareness Week. Lindsey Bennister, Chief Executive of Sarcoma UK, is pictured with Lead Cancer Nurse, Gill Hamblin and patient representative, Cameron Burry.

Meets: First Thursday of every month, 2-4pm Venue: Tebbit Centre, the Nuffield Orthopaedic Centre, Windmill Road, Oxford Pip Large - 01865 737861; philippa.large@noc.nhs.uk Helen Stradling - 01865 738282; helen.stradling@noc.nhs.uk W: www.oxfordsarcoma.co.uk/2011/01/oxford-sarcoma-support-group-2011

London

Meets: First Wednesday of every month, 4 – 6pm Venue: Ground Floor Physio Gym in The Markus Centre, Royal Marsden Hospital, London SW3 6JJ E: londonsarcoma@yahoo.co.uk W: www.londonsarcomasupport.net

Bristol and South West England

Meets: Third Monday of every month, 4 – 6pm Venue: The Windsor Room, Bristol General Hospital, Guinea Street, Bristol BS1 6SY E: info@bristolsarcomasupport.co.uk W: www.bristolsarcomasupport.co.uk

South of England

Meets: Second Wednesday of every other month, 2.30 – 4.30pm Venue: Wessex Cancer Trust, Bellis House, 11 Westwood Road, Southampton SO17 1DL Louise Porter, Sarcoma Clinical Nurse Specialist - 02380 777222 (Ext.5059) E: louise.porter@suht.swest.nhs.uk E: sarcomasouthuksupport@hotmail.com

Always check with the group direct before attending, in case details have changed. If you don’t have a local support group, and would like to set one up, get in touch - call 020 7250 8271 or email info@sarcoma.org.uk www.sarcoma.org.uk

Connect

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News

News round-up The latest sarcoma-related news from around the country Ewing’s National Multi-Disciplinary Team The English national multidisciplinary team (MDT) for Ewing’s sarcoma is now meeting regularly. Sarcoma UK has been told that over twenty bone sarcoma patients have now been discussed – the MDT cannot discuss soft-tissue Ewing’s as it is supported by the National Commissioning fund for specialist bone cancer treatment. The meeting uses web-based technology to bring together specialist surgeons, oncologists, pathologists and radiologists from the five bone sarcoma centres, and the paediatric and teenage cancer units which treat these patients. The meeting is chaired by Dr Jeremy Whelan of University College London Hospitals. The main aim is to agree a local treatment plan for every patient and through consensus and review of management of patients improve the eventual outcome for all patients.

Sarcoma numbers getting clearer The national cancer registry lead for sarcoma, the West Midlands Cancer Intelligence Unit (WMCIU), has been

busy trying to resolve the actual numbers of sarcoma patients there are in England, and by simple extension, the whole United Kingdom. Analyses of the incidence of bone and soft tissue sarcomas have been published, and although there is growing certainty on numbers, and on the parts of the body which sarcomas affect, there are still gaps in the national data. A new dataset is being developed against which new diagnoses will be reported. If you are interested in following this work the National Cancer Intelligence Network (NCIN) website is very informative and has links to download papers developed by WMCIU: http://tinyurl.com/62aun3n The aim of the work is to inform the NHS, the specialist sarcoma services and the voluntary sector so that we can work together from a solid base of evidence to improve the standards of treatment and care sarcoma patients receive.

Early Diagnosis initiative The National Awareness and Early Diagnosis Initiative (NAEDI) is a

Sarcoma Patients EuroNet Sarcoma Patients Euronet (SPAEN), the international association of patient groups concerned with sarcoma (and of which Sarcoma UK was a co-founder) has launched its website at www.sarcomapatients.eu SPAEN held its 2010 annual conference in November in Madrid attended by about 40 delegates including representatives from Sarcoma UK and GIST Support UK. The conference aims to raise the knowledge of patient groups about standards of care and treatment by bringing patients together with leading doctors to discuss key topics. The next conference will be in Berlin in autumn 2011.

SPAEN is a partner in the EuroSarc research collaboration and will be providing a patient view on the development of new clinical trials in Europe. Connect

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national initiative funding research to identify routes by which cancer messages can be given to the population. Early presentation of symptoms by people depends on them understanding what those symptoms are, and in certain areas there is the need for supportive education among doctors to develop their diagnostic skills. Lindsey Bennister, Chief Executive at Sarcoma UK, recently met with the Department of Health team to discuss ways of raising awareness of the importance of early detection of rarer cancers and had the opportunity to present detailed information about the problems around early diagnosis for sarcoma.

You advised, we listened A total of fifty patients, carers, support group leaders, nurses and allied healthcare professionals were invited to a weekend event in Manchester to help Sarcoma UK review its support services, and develop plans for new forms of information and support. Six priority areas were identified for improvement: for local support group • Training leaders, and increased support for local groups from Sarcoma UK. Raising the profile of Sarcoma UK and its services so that everyone diagnosed with sarcoma knows about the support available. Telephone service for carers. Annual meeting/event for sarcoma patients and relatives. Patient information pack produced by Sarcoma UK that is given out on diagnosis. Developing our online presence including the creation of an online forum.

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We are currently working to improve these areas, so watch this space! www.sarcoma.org.uk

News

National Cancer Patient Experience Survey (England) – sarcoma shock The Cancer Patient Experience Survey undertaken by the Department of Health in 2010 in England was published shortly before Christmas. It is the second such survey and is probably the biggest survey ever undertaken among cancer patients anywhere in the world, with over 67,000 people responding. For the first time a deliberate attempt to survey rarer cancer patients was made and sarcoma was selected to be a distinct sub-group in the analysis. This gives a comparison between the experiences of sarcoma patients treated in the NHS with other more common tumour types, and with the ‘average’ cancer patient. Of the 67,000 responses 713 were from sarcoma patients, about 1% – a fair representation within the overall study. The results will come as little surprise to many with sarcoma. In almost every question asked about treatment, support, information and explanation, and access to specialist nurses, sarcoma patients gave the lowest score. The survey showed no significant differences between tumour groups regarding the trust patients felt in their doctors and other clinical staff. 83% of sarcoma patients felt their doctors knew what they were doing, quite a bit higher than those for other rare cancers though lower than most of the more common cancers. The huge amount of data in the study is analysed in a number of reports published by the Department of Health. It includes age and gender based analyses (not by tumour type) and a report for every hospital trust treating cancer (158 of them). The full study and trust reports can be found at http://tinyurl.com/3x8x8mz

www.sarcoma.org.uk

Only 43% of sarcoma patients were given written information about their operation. On a positive note, when asked about being given information on self-help support groups, 76% of sarcoma patients were given such information, more than several other tumour groups including most rarer cancers.

British Ceremonial Arts Limited

We are delighted that Sarcoma UK’s founder and now Honorary President, Roger Wilson, was honoured with a CBE in the New Year Honours for services to healthcare. In June, Roger and his wife Sheelagh were invited to Buckingham Palace and Roger was presented with his medal. Roger said: “We climbed the grand staircase, I was briefed on what would happen and what to do, and then after what seemed like an interminable wait, I took my turn and stepped forward to meet the Queen. It’s a moment to remember.”

Only 68% of sarcoma patients thought they were seen soon enough, again the lowest figure in the survey. Overall 77% of patients said that the gap between the time when they first thought something might be wrong and when they first saw a hospital doctor was less than 3 months, while the figure for sarcoma was 63%.

not deteriorate while they waited, whilst 39% had felt that their health had deteriorated.

Meanwhile Sarcoma UK is reviewing its information provision and, by working with the specialist centres treating sarcoma, we will help improve the quality of the information offered to new patients.

As well as founding Sarcoma UK, Roger has played a significant role in raising awareness of sarcoma including as a patient representative with the National Cancer Research Institute (NCRI) and Network (NCRN), spending three years on the Board of NCRI, and chairing the patient group within NCRN. He has been a patient representative and Advisory Board member with the Cancer Reform Strategy since 2007, and has been active in the National Cancer Survivorship Initiative.

80% of sarcoma patients waited less than 4 weeks for their first appointment. But this compares poorly with other cancers and sarcoma was in fact the lowest figure out of all sub groups. In breast cancer 96% waited less than 4 weeks and the overall figure for other rare cancers was 86%. This also implies that 20% of sarcoma patients are waiting longer than 4 weeks.

61% of sarcoma patients said their health did

Professor Sir Mike Richards, National Cancer Director, has acknowledged the poor showing for sarcoma, and for other rarer cancers, in the study. A number of actions are being taken to try and make changes which will improve the situation. He has committed to repeating the study in 2012.

A royal blessing

Key findings

Roger holds up his CBE medal awarded by the Queen

Roger has also recently been awarded an Honorary Doctorate by the University of Sheffield. Connect

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Treatment

Treatment update We bring you a selection of national and international developments in the treatments of sarcoma Funding new treatments in the NHS When new treatments become available internationally there is no guarantee that the NHS will be able to make them available to UK patients. The National Institute for Health and Clinical Excellence (usually known as NICE) reviews new technologies for England and Wales while the Scottish Medicines Consortium (SMC) does the same for Scotland. In recent years NICE and SMC have approved NHS funding for imatinib and sunitinib for GIST, and NICE has approved trabectedin for soft tissue sarcoma. However, in July the Scottish Medicines Consortium announced that it has not accepted trabectedin for use in Scotland because “uncertainties in the clinical and economic evidence submitted by the manufacturer, together with the high cost of the treatment, meant it was not considered to be value for money”. The most recent NICE appraisal has been for mifamurtide (Mepact®) for the treatment of osteosarcoma patients younger than 30 years old who have had their disease completely removed by surgery. The mifamurtide appraisal is the first that NICE has ever undertaken for a children’s cancer and it presented them with many challenges, reflected by the number of meetings the Appraisal Committee needed to make a decision. At the time of publication, a decision is still to be made by NICE and the SMC.

With manufacturer applications now being made to the licensing authorities for deforolimus and pazopanib (Votrient®) for the Connect

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treatment of soft tissue sarcoma we are anticipating NICE and SMC appraisals of these two new drugs. NICE has deferred a review of the appraisal of adjuvant imatinib undertaken in 2010, anticipating that new evidence from clinical trials will be published in the next twelve months.

23andMe – international genetic study In autumn 2010, Sarcoma UK was made aware of an international philanthropically-funded study looking at the genetics of sarcoma. 23andMe is a commercial genetics analysis service and the sarcoma work is funded through connections with Yahoo, Google and other IT organisations. The aim is to build a ‘Sarcoma Community’ with up to 1,000 participants initially whose genetic information can inform researchers. More than 350 members have now contributed saliva samples for genotyping analysis and have answered a number of questionnaires to give background information. We know that a good number of UK patients are participating. The website at www.23andme.com/ sarcoma has further details. If you register an interest 23andMe will send you a pack by which you can donate a saliva sample via a pre-paid courier pack. (You can of course withdraw by not returning the pack.) They will give you a login identity for the website and you can then complete questionnaires which provide supporting details of health and family history.

New drugs demonstrate growing research The annual American Society of Clinical Oncology (ASCO) meeting is the favoured venue for the announcement of important results from clinical trials. The recent growth in trials for sarcoma is now being reflected by results which promise to change clinical practice. In recent years trabectedin (Yondelis®) became the first new treatment for advanced sarcoma in twenty years. Now pazopanib (Votrient®) has shown positive results from the PALETTE trial and we have been told by the manufacturer, GSK, that it is applying for a licence to treat advanced sarcoma. Ariad Pharmaceuticals, a small US based biotechnology company, has also announced positive results from its SUCCEED trial of ridaforolimus. This offers a maintenance therapy for patients who have responded to chemotherapy. MSD Oncology is applying for a licence for this new treatment. Imatinib (Glivec®) revolutionised the treatment of GIST a decade ago. Now trials using it as an adjuvant therapy to prevent relapse following surgery are coming to fruition. A Scandinavian/German study compared the benefits from three years with one year of treatment for patients with a high risk of recurrence. The results were welcomed by doctors and patient organisations as setting a new standard for the treatment of patients with GIST. Adjuvant imatinib is not approved by NICE for NHS funding, although a review in 2012 has been promised. www.sarcoma.org.uk