2017 vision november final

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VISION, NOVEMBER/DECEMBER 2017

Hippocratic Oath gets a modern upgrade A New Zealand doctor's amendment to the modern Hippocratic Oath sworn by all doctors has been ratified unanimously by the World Medical Association. Queenstown doctor Sam Hazledine's change allows doctors to prioritise their own health as well as that of their patient. He said that doctors have always put patient care first, "and that shouldn't change. Research had shown stress and burn-out also led to depersonalisation and an emotional disconnection from patients. "So despite 'first, do no harm' being the core principal of our profession, the way we're being as doctors - in the majority of us - is actually causing us to harm our patients," Dr Hazledine Physician leaders, meeting at the World Medical Association’s (WMA) annual General Assembly in Chicago, approved revisions to the Declaration of Geneva, a physician’s pledge which was adopted by the WMA in 1948. The revised Declaration, to be called a pledge, refocuses the text to reflect changes over the decades in the relationship between physicians and their patients and between physicians themselves. The new pledge makes specific reference for the first time to respecting the autonomy of the patient, which is not included in the current text. It also includes a new obligation for respect between teachers, colleagues and students. The present Declaration says students must respect their teachers, but there is no reciprocity. There is a new obligation on physicians to share medical knowledge for the benefit of their patients and the advancement of healthcare. Also added is a requirement for physicians to attend to their own health, well-being and abilities in order to provide care of the highest standard. The WMA is now expecting that the revised pledge, agreed following a two-year revision process, including a period for public consultation, will become a global ethical code for all physicians.

Keytruda approved in SA MSD's cancer drug, Pembrolizumab, has received regulatory approval by the Medicines Control Council (now South African Health Products Regulatory Authority) in South Africa. This followed agreement with the Department of Health that the application complied with the criteria for fast-track review. Breakthroughs in immuno- oncology provide healthcare practitioners and patients with new options to treat cancer that did not exist before. MSD is currently working on making Pembrolizumab (trade name Keytruda) available to patients in early 2018.

CanSurvive Celebration (see page 6)

Don't wait to remove melanoma The sooner the deadly skin cancer melanoma is treated, the more likely a patient is to survive according to a Cleveland Clinic study published online in the Journal of the American Academy of Dermatology. No matter what stage their cancer was, those who waited more than 90 days for surgical treatment were more likely to die. And postponing surgery for more than 29 days led to lower survival rates for patients with stage 1 melanoma, though not for those with stage 2 or 3. Compared to patients who were treated within 30 days, patients with stage 1 melanoma were 5 percent more likely to die when treated between 30 and 59 days. Their risk of death rose 16 percent when treated between 60 and 89 days; 29 percent when treated between 91 and 120 days; and 41 percent when treated after 120 days. "The ideal timing for melanoma treatment, predominantly surgery, had yet to be determined - until now," said primary investigator Dr. Brian Gastman. He is director of melanoma surgery at the Cleveland Clinic in Ohio. "We saw significantly worse prognoses and outcomes for those surgically treated after 30 days of stage I melanoma diagnosis. Knowing for certain that a more expedient time to surgery to remove an early melanoma improves the chances of survival is a game-changer in treating this life-threatening skin cancer," Gastman said in a clinic news release. Melanoma is on the rise in the United States and nearly 162,000 new cases are expected to be diagnosed this year. You are urged to regularly check your skin for any new, changing or suspicious spots, especially if they are itchy or bleeding. Moles that are asymetrical, bigger than a pencil eraser or that are changing in size, shape or color should be examined by a doctor.


VISION, NOVEMBER/DECEMBER 2017

Looking good when dealing with cancer

Inspiration from a survivor Another year rolls by, they seem to be getting faster each year. 15 years ago I walked out of hospital cancer free, having only been given a 10% chance of surviving two years with a very rare form of cancer.

Members of What Next (www.whatnext.com) offer some advise on looking and feeling good while undergoing cancer treatment: While makeup assistance is sure to be appreciated, clothes can cause the biggest issue. WhatNexter mom25 writes about the alltoo-common issue of extreme weight loss during treatment. “I’ve already dropped more than 20% of my normal weight (from 121 lbs to just 94 lbs) … nothing I own fits anymore.”

Having spent nine months in hospital going through extreme chemo and radiation, where the treatment took me to within an inch of my life on more than one occasion, it feels like yesterday. Five months into my treatment I had given up the fight. I couldn’t talk or swallow as the radiation had burned my throat so bad that I had to write these words ”I give up, I just want it to end now” in my book next to my bed. I couldn’t take it anymore ... these words remind me what it’s like to be on deaths door.

There is one small upside to this problem: it means you have to go shopping. BoiseB from the forums recommends a trip to the thrift store to get a minimal basic wardrobe with an emphasis on comfort.

I refused to go back into hospital for my next treatment. I hadn’t eaten solid food for the past six weeks as I couldn’t swallow, I had to be moved around in a wheelchair as my body was too weak. I was forced into hospital and induced into a coma for three days while I was feed through a nasal gastric tube to try get some sustenance into my body to complete the radiation programme I was on. I woke up close to death, I had given up.

And while many women would not believe it, even male cancer patients can benefit from a shopping spree (contrary to popular belief, not all of us are born slobs). WhatNexter Hussy found that after diagnosis, her husband had a “knack for finding all the 90% off” items at clothes. As a result, she writes, “he looks and feels better in clothes that fit.” Keep it practical It’s important to find clothes that not only look good, but that are practical. This can mean certain tweaks to your usual style that you may not have considered. For example, clothes with buttons are easier to put on and take off than pullover tops. They also can provide easier access to doctors who need to administer IVs or tend to chemo ports. However, since chemo treatments can sometimes cause loss of feeling in the finger tips, you might want to opt for clothes with large buttons.

Then this lady walked into my room who I had never met before. She used to go round hospitals saying prayers for the terminally ill patients and asked if she could pray for me. My body was so weak I could hardly even nod yes. When she opened her Bible one of these “ helicopter seeds” fell out of the back of the book and onto my lap, the seed was all worn and shredded. She picked it up and said she hadn’t seen this in years it was given to her when she had cancer 20 years ago...she put the seed in my hand and said that it was like my body, worn and looked destroyed now - but if planted and looked after it would grow into a big strong tree.Something in my head clicked at that moment and tears filled my eyes and I suddenly had the will to fight this again. I wanted to live, I wanted to be that tree for my one-year-old son. This lady spent 20 min in my life and has no idea how much she changed it. I wish I knew who she was to say thanks for being the Angel in my life and giving me the courage to pick myself up. Having gone through this ordeal is the best thing to ever happen to me. It made me realise what’s important in life. Make the most of each day and don’t let the trivial petty things get you down. That seed is in a frame in my house and I carry one in my wallet to remind myself of that day. Have a great day, I know I will with my wife and my boys. Life is great don’t give up hope. - Brian Fitzpatrick

Tops with larger neck openings - like boat necks - also provide convenient access to ports. And short sleeves allow for easier blood drawing. Mahina (and other WhatNexters) advise that black yoga pants are the essential wardrobe item. “Basic black yoga pants and athletic wear can go a long way because of the stretch,” she writes. Pants with elastic waistbands also work well, provided that they don’t put too much pressure on your middle and exacerbate nausea. Pajamas One of today’s stranger fashion trends is young women wearing pajamas outside of the house. This means that cancer patients have an opportunity not only to dress comfortably, but still be up with the latest trend of the moment. Laredosam1 writes that she decided that “this is the best time to wear what I am comfortable in and say, ‘hey, I have cancer, so I have an excuse to go to the corner store in pjs and slippers and a coat if I feel like it.”

Palliative care training

It’s important to wear what makes you happy. When cancer arrives, the usual fashion rules go out the window. But when you can manage to dress well and stay comfortable in spite of the disease, those occasional looks in the mirror will give you a much needed boost and put the spring back in your step.

Throughout the year Hospice Wits host various short courses: the 5day Introduction to Palliative Care, 2,5-Day Grief, Loss and Bereavement Workshop, 5-day Introduction to Paediatric Palliative Care, 3-day Non-Clinical Palliative Care, 3-Day Physical Assessment Workshop, as well as other client specific courses which they present on request. For further details phone 011 483 9100 or email training@hospicewits.co.za.

https://www.whatnext.com/blog/

Never take away anyone's hope - that may be all they have! 2


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Cancer Warrior Walk The Breast Health Foundation and Bosom Buddies invite all cancer warriors, their families and friends to join us for the 5KM One Step at a Time Cancer Warrior Walk in the Johannesburg Zoo, 4 February 2018. Gates open at 6:00am, the walk starts at 7:30am. One Step at a Time is an iniative of the Breast Health Foundation, symbolic of personal triumph and victory from diagnosis, treatment to survivorship. The journey began in 2016 when five breast cancer survivors trekked to Everest Base Camp. Everest represents the epitome of human conquest and achievement. A trek to Everest Base Camp (EBC) with breast cancer survivors was a public demonstration of the strength of the human spirit.

You are cordially invited to join us at our public meetings where breast cancer patients and their friends and families have an opportunity to mix with other patients and survivors, as well as to listen to talks on issues related to breast cancer.

This event is a symbolic message of defiance to go out to all people fighting cancer and stand as an example of what is possible. Exercise plays a very important role in long-term health and walking is an ideal form of exercise that can be enjoyed by the survivors, their families and supporters.

Next meeting dates: 25 November Time: 9:30 for 10:00am

To get your tickets go to https://www.quicket.co.za/events/35316-one-step-at-a-timecancer-warrior-walk-hosted-by-breast-healthfoundation/?lc=VISION

Venue: Hazeldene Hall, 13 Junction Ave, Parktown, Johannesburg, FREE ENTRY, Enquiries: louise@mybreast.org.za / 0860 283 343 Stay informed with The Breast Health Foundation: Facebook: https://www.facebook.com/BreastHealthFoundation/ Twitter: https://twitter.com/BreastBhf Instagram: https://www.instagram.com/breasthealthfoundationsa/ Website: http://www.mybreast.org.za/

Bosom Buddies is a support initiative brought to you by The Breast Health Foundation.

3D printed prosthetics for breast cancer survivors

women in Science, Technology, Engineering and Mathematics (STEM). With an initial focus on creating prostheses for burn victims and patients with facial deformities, Nkholise realised that the same process could be used to create artificial breasts from bio-compatible silicone elastomer to help women reconstruct their bodies after undergoing a mastectomy.

Mechanical engineering technologist, Nneile Nkholise, is helping breast cancer survivors who underwent a mastectomy by creating 3D printed artificial breasts through her med-tech startup, the iMed Tech Group.

Breast cancer is the leading cause of cancer among South African women. According to CANSA, proximately 19.4 million South African women aged 15 years and older are at risk of being diagnosed with breast cancer.

While completing her Master’s degree in Mechanical Engineering at the Central University of Technology (CUT), Nkholise founded the iMed Tech Group based on her research on the applications of Additive Manufacturing (AM), a process based on 3D printing, in fabricating medical prosthesis at a far cheaper and quicker rate than traditional production methods.

To help cancer survivors who are unable to afford breast prostheses, Nkholise has initiated a campaign to supply 1,000 prostheses to 1,000 low-income women. Through the iMed Tech Group, Nkholise employs primarily young African women who have an interest in and experience in mechanical engineering like herself. In her short career, Nkholise has made a name for herself through her work and has been recognised as one of Africa’s top female innovators at the World Economic Forum in 2016. She also successfully competed in the Discovery MedTech Silicon-Valley programme around her work in 3D modelling.

“I realised how the demand for prostheses is so high while the current methods for manufacturing them couldn’t meet these demands. Hence, I decided to start a company to meet this challenge. I believe that there is a huge gap between academics and business because many of our research findings are never exposed for commercialisation. I saw the need to take my research findings to the market,” said Nkholise in an interview with Levers in Heels, a website dedicated to promoting African

http://ehealthnews.co.za/3d-printed-prosthetics-breast-cancer/

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VISION, NOVEMBER/DECEMBER 2017

Cancer Challenge Randburg Bowls Club held their annual Cancer Challenge bowls day during November. This popular fun competition eventually raised some R30 000 for their chosen charity, CanSurvive Cancer Support. Each team competing in the Challenge had to have at least one cancer patient or survivor

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VISION, NOVEMBER/DECEMBER 2017

Embracing Anxiety

Lancet pilots paperless patient intake app

- coming back with hope

Good news for all of us that need regular check-ups. Lancet Laboratories has successfully completed pilot testing of the medical form-filling app, LogBox, to introduce paperless patient intake at the Wits Donald Gordon Medical Centre in Johannesburg. Rollout to Lancet sites in Gauteng has commenced, and national rollout should be completed by early 2018.

In “Embracing Anxiety” An Bakkes shares an ongoing journey that requires commitment to self, the willingness to become comfortable with life’s discomfort and the courage to choose from a healthy space with every decision that needs to be made.

The app enables a ‘digital lab’ that benefits patients and laboratory staff. By eliminating paper forms, the intake process is faster and more efficient, and the patient information captured is more accurate.

Embracing Anxiety came to life due to the author’s intense personal trauma, followed by extreme academic research and rubber stamped by the workshops and coaching sessions that has since been done using the “embracing anxiety” model.

“Some of our patients require monthly testing, and filling in the same forms each time was frustratingly repetitive and time-consuming for them and our staff who know these patients on a first-name basis,” says Sandile Sihlaba, marketing manager at Lancet Laboratories.

An Bakkes has a BCom in Sports Management, BA Hons in Psychology, Diploma in Coaching (USB), and a MPhil in Management Coaching. An is a Master Coach, Facilitator & Agile Coach. She is a pilgrim of life that spends her time engaging with her passions. These passions include coaching, interactive workshops, facilitation and conversations that shape people, organisations and the world. An’s journey includes executive and senior management roles as well as managing mergers and acquisitions. An brings versatility and insight that stretches across disciplines, knowledge domains and different industries.

Developed by South African orthopaedic surgeon Dr Neal Goldstein, with global software development company EPI-USE, LogBox offers doctors and allied healthcare professionals a secure, easy to use, PoPI-compliant application accessed via a desktop or mobile device. Free for patients, demographic and other information is safely captured once and then shared multiple times in the future with other medical practices that subscribe to LogBox – like Lancet – with explicit consent.

“I was really moved by your story, and the way you’ve not only picked yourself up but also found it in your heart to offer a map, and with it hope, to so many others who find themselves in similar dark places. You have my respect and admiration for the work that you’re doing.” - Dr Michael Mol

Dr Goldstein says “Lancet can now offer a less stressful waiting room experience to their patients, confident that they have the correct information as staff don’t have to struggle to read handwritten forms”.

CANSA partners with KZN Health Department to increase cervical cancer screening A team of volunteers, social workers and nurses from the non-profit organisation, the Cancer Association of South Africa (CANSA), made its way to the Umzimkhulu Primary Health Clinic, along the winding road from Pietermaritzburg. Trailing behind them was CANSA’s Mobile Health Clinic, from which the team conducts screening for various cancers, including Pap smears to detect the early signs of cervical cancer, which is mostly caused by the sexually transmitted Human Papilloma Virus (HPV). Mthembu and about 50 other women, some with children, had queued for hours outside the clinic, about 110 km from Pietermaritzburg, in KwaZulu-Natal. By the early afternoon, the floors of the clinic are strewn with apple cores and the leftovers of other snacks mothers had packed for their toddlers.

Umzimkhulu Primary Health Clinic, Pietermaritzburg – image source: bhekisisa.org Mthembu says she watched her mother suffer from uterine cancer and is determined not to make the same mistake. “My mother was too scared to check what was wrong with her - in the end, doctors had to remove her womb.”

Phindile Mthembu is nervous. “I am very worried. I have been experiencing a discharge - and a very bad smell,” she says, picking at a loose thread on her denim skirt.

Inside the clinic, operational manager Nozingisa Makhanya runs her index finger over the pages of a tattered logbook. “In the last two weeks, we have only done five Pap smears. In one day, with the CANSA people here, we had already done eight by early afternoon.”

Like many other patients in the queue, Mthembu came to the clinic unaware the CANSA nurses would be there. But she believes their presence is an unexpected blessing.

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Snapshots from CanSurvive’s Celebration of Life

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Before you change your medical aid cover ...

Test could diagnose oesophageal cancer eight years earlier A new genetic test could help diagnose oesophageal cancer up to eight years before symptoms appear in people at a high risk of the disease, according to new research presented at the National Cancer Research Institute’s (NCRI) Cancer Conference in Liverpool.

Before making any change to your healthcare cover, it is crucial to thoroughly investigate and compare your options and benefits to ensure that you are not financially compromised by any change. According to Gavin Griffin, of Aon Employee Benefits the key is to thoroughly review the benefit richness of a medical scheme option. “Typically, medical schemes can be complex and it can be difficult to understand how to compare benefit options which vary so widely; making like-for-like comparisons tricky at best. It’s a task best undertaken with the guidance and advice of a professional broker who can do a thorough needs analysis; review your claims history and map this back to your budget. Based on this information, your healthcare broker can advise on the best plan to ensure that your healthcare needs are comprehensively covered and that any change won’t leave you compromised or facing hefty out of pocket expenses that you cannot afford,” explains Gavin.

University of Cambridge researchers Sarah Killcoyne and Eleanor Gregson looked at tissue samples from people with Barrett’s oesophagus – a common condition of the food pipe that can develop into cancer in around 5% of people. They retrospectively identified predictive genetic markers in 94% of people who later developed early signs of oesophageal cancer and were able to spot these markers in samples that had been taken many years before symptoms appeared. Source: NCRI m Many consumers are opting for more affordable hospital cover plans only, and then topping up cover with this gap insurance to address any shortfalls that may arise. They then also take on the risk of having to fund any day-to-day expenses for General Practitioner visits, Dentistry, Optometry and so on from their own pocket. An analysis of your claims history and state of your health and your dependants will be important in assessing whether such an option will work for you.

“In reviewing your medical scheme cover, where costs and benefits on a medical scheme are of concern, you could consider moving to a lower benefit option within the same medical scheme. By doing so, you can avoid waiting periods that are typically associated with a complete change in medical scheme provider,” explains Gavin. “You furthermore, have the opportunity to either, buy-up within the medical scheme to acquire better benefits if your claims history demands it, or to buy-down with the purpose of securing lower monthly contributions. Most medical schemes only allow a buy-up at the beginning of a benefit period – which means changes will need to be made in December to be effective in January, but would allow a buy-down at any time of the year. Some schemes would allow a change during the year as a result of a ‘life changing event’, such as an addition to the family,” Gavin adds.

m Out of hospital or day-to-day limits vary dramatically between medical schemes and benefit options. If your medical savings limits are low, but you have regular visits to the doctor for certain conditions, you could find that two or three consultations with a Specialist will quickly deplete your funds, leaving you to fund any further costs from your pocket, or at least until your self-payment gap, if applicable, has been reached, which could be a few thousand Rand.

When comparing healthcare and benefit options

m Certain medical schemes limit hospital pay-outs to a certain amount per family per year. If more than one family member requires hospitalisation in the same year, you could face considerable financial stress.

m Never change to another medical scheme or benefit option simply because the contribution is lower than your current option. You need to compare the actual benefits, exclusions, value adds and service delivery, along with your specific healthcare needs, such as any chronic conditions and the medication you require. Weigh up the cost of different types of cover against the benefits provided – for example a more basic medical scheme might only cover health care costs related to hospitalisation and Oncology only, while day-to-day costs of General Practitioner visits, Optometry and Dentistry for instance would be for your own cost. Comprehensive cover may include dental and eye care, physio and even ‘natural’ or homeopathic therapies subject to certain limits.

m Exclusions and waiting periods may apply – joining a new medical scheme, certain waiting periods or exclusions may be applied – these could be from a three months general waiting period up to 12 months condition specific waiting period for certain conditions. m Designated provider network – many benefit options require that you make use of practitioners and Hospitals designated by the medical scheme as they provide medical services at a fixed rate negotiated with the medical scheme. If you make use of a specialist or provider not on the list, for whatever reason, you could face significant co-payments, or in some instances, forfeiture of any cover.

m 100% cover means you’re fully covered right? This is not the case. Specialists and in-hospital charges can be up to 400% of the benefits offered by medical scheme. So if your medical scheme only pays out at 100% of tariff, you will be liable for the shortfall or remaining 300% out of your pocket. This can amount to thousands of Rands and leave you in a serious financial predicament.

Only after considering your claims history; state of health; and level of cover required by you and your dependants; as well as what level of self-funding you are able, or willing to bear; can you make an informed choice. It’s a role best undertaken with the guidance and advice of a professional healthcare broker who can do a thorough needs analysis and then investigate the benefits options provided by a reputable medical scheme to meet your needs and budget,” concludes Gavin.

m Gap cover policies for medical scheme shortfalls are proving to be invaluable safety nets by covering certain in-hospital and Specialist shortfalls that may occur, at a relatively inexpensive monthly family premium.

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Amazing Geluksdal Cancer Support Group Geluksdal has a very active support group and are trying to help as many people as possible in our community. They are not registered as an NPO/NGO yet so there is no funding. Everything they do are solely out of fund raising. Recently the group leader, Sherine Kock, became an ambassador for Twinsaver Tissues and she features on the Twinsaver package with two other group members. You can contact Sherine Kock (0798009003Â l) for more details of this vibrant group.

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Healing yourself with Wings of Hope

Wings of Hope Cancer Support had a successful meeting on 7 October 2017 with Maria Waskow. Maria is a cancer survivor and has spent years developing a holistic approach to cancer treatment and care. The audience were enthralled with her experience of healing herself and also her ability to dedicate her life to assisting others inflicted with the illness. The interactive presentation got the audience exploring natural remedies in conjunction with traditional radiation and chemotherapy treatments. The Wings of Hope Cancer Support year end function will take place on 25 November 2017 at 9.30am at the Deutsche Internationale Schule (German School), 11 Sans Souci Road, Parktown, Johannesburg

VISION E-NEWSLETTER

Cape Town PSA and male cancer support group

VISION is produced for CanSurvive Cancer Support and is an e-newsletter for cancer patients and caregivers everywhere and with any type of cancer. Please send details and pics of any support meetings and cancer related events anywhere in South Africa so that we can include these in the newsletters. Your comments, articles, and letters submitted for publication in VISION are always welcomed and can be sent to the Editor at: cansurvive@icon.co.za.

For more information contact:

Helpline: 076 775 6099 Email: info@can-sir.org.za. Web: www.can-sir.org.za Our grateful thanks to Medi-Clinic for providing a home for our activities and refreshments for our members. It is much appreciated by us all.

Subscription to the newsletter is free - just email us.

Enquiries: 0836404949 9


VISION, NOVEMBER/DECEMBER 2017

Trust: data versus doctor

James C. Salwitz, MD Dr. Salwitz is a Clinical Professor at Robert Wood Johnson Medical School. He lectures frequently in the community on topics related to Hospice and Palliative Care and has received numerous honours and awards, including the Physicians Leadership Award in Palliative Care. His blog, Sunrise Rounds, can be found at http://sunriserounds.com

Who is responsible for mistakes in health care? Who should take credit for success or blame for failure? Most families, patients and obviously the courts, hold the doctor responsible. It seems to me this is reasonable; it is the obligation physicians assume and which society returns with empowerment and respect. However, is this changing because of the Internet and big data? This year, most patients have spent hours on the internet investigating their medical complaints, before they walk in a doctor’s front door. Rather than having sole faith in their doctor’s advice and knowledge, they work to become minor experts in their illness. Patients frequently have tests, diagnosis and treatment in mind (or printed in hand), before the physician even opens their chart. Does this mean that the balance of responsibility for medical care is shifting toward the patient? In the future when a mistake happens will we say, “well, she deserved that, she didn’t take the time to look it up on WebMD?” Both players in this relationship have strengths and weaknesses. The doctor has years of experience, which can help predict medical futures. They have formal training, the ability to incorporate myriad unrelated conditions, cultivated medical judgment to detect subtle change and the emotional objectivity to make tough recommendations while communicating in a compassionate manner. Yet physicians have limited time for each case, carry a tendency toward tun-

Let’s talk about cancer! Join us at a CanSurvive Cancer Support group meetings for refreshments, a chat with other patients and survivors and listen to an interesting and informative talk. Upcoming meetings: SOWETO, HapyD, 1432 Buthelezi St. Jabulani - 18 November 09:00 CHARLOTTE MAXEKE Radiation Department, Level P4 - 6 December PARKTOWN Hazeldene Hall (opposite Netcare Parklane Hospital) - 9 December 09:00 PINEHAVEN, Pinehaven Hospital - OPENING TO BE ANNOUNCED PARKTOWN Hazeldene Hall (opposite Netcare Parklane Hospital) - 13 JANUARY 09:00 CHARLOTTE MAXEKE Radiation Department, Level P4 - 10 January

Enquiries: 062 275 6193 or email cansurvive@icon.co.za www.cansurvive.co.za www.facebook/cansurviveSA The Groups are free and open to any survivor, patient or caregiver.

nel vision based on preconceived notions which can corrupt differential diagnoses, may have finite “patience” for each patient’s peculiarities and of course in the end are simply human, with all that creature’s colorful flaws. Relative to the needs of an individual or family, the internet is a source of massive information, which is infinite in quality, quantity and patience. It can connect with experts from anywhere giving upto-date answers at any moment. It has no single bias and as a whole is immune to tunnel vision. On the other hand, the internet has no ability to focus or tune answers for a specific individual, but must rely on searches from patients who are biased, medically naïve, frightened and ill. Patient online investigations often yield bad data, either because the website is unreliable or because the patient does not ask the correct questions. Hundreds of patients have come to my office having done exhaustive research on the wrong disease. Finally, the internet has no built in screen to identify high quality sites verses snake oil salesman, who simply had a good web designer. As a generalisation, doctors are likely to produce the correct diagnosis and treatment, but are often incomplete in their communication, teaching and offer too little choice. While physicians usually take into consideration medical variation in the patient regarding how the treatment of one condition affects another, they may underestimate the individual patient’s emotional need. The failure to adjust for individual desires and cultural norms can produce poor compliance. On the other hand, patient generated computer searches result in reams of data which may include the individual illness, but are broad and unfocused even though producing extensive choice. This kind of internet research may empower one patient, but for another the intellectual burden and anxiety may result in the patient making lousy decisions or confuse them to the point of inertia. So, how does the data revolution affect the doctor-patient relationship and does it change responsibility? If both parties are open to opportunity, having a patient prepare in this way can improve the quality of discussion. Even if the patient’s internet prep is not quite focused on the particular medical problem, it at least makes the patient familiar with the broad issues and language, which helps the doctor, with the limited time available, more clearly communicate. With this being the goal, both patient and doctor need to bend, a little. The doctor needs to welcome the data and the better basic education that online investigation gives the patient, and the patient needs to be aware that the doctor’s decades of experience cannot be replaced by a Google search. By finding a balance, better health is possible. Who is responsible for the quality of medical care? I would suggest both the doctor and patient and I do not believe this changed at all. Both must demand full commitment and responsibility from thems elves, as well as the other. The data revolution underlines, more than ever, that medical care is a team sport. Only together, do we heal.

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VISION, NOVEMBER/DECEMBER 2017 CANCER ALLIANCE ADVOCACY TOOLKIT

Priority area #8: Addressing the negative impact of poverty on cancer services Huge health inequalities in South Africa, with African and rural communities worst affected, means poverty remains the unjust determinant of whether cancer patients receive the treatment they deserve - and too often also whether they live or die. The effective design and delivery of oncology services for State patients is falling chronically short, daily violating the human rights of the most vulnerable in South African society whose only ‘offence’ is that they are poor.

The facts South Africa’s health system is dysfunctional, mostly thanks to the country’s history of discrimination based on race and gender. The current provincial healthcare system is focused on a primary care model that only makes provision for cervical and breast cancer in the Ideal Clinic Algorithm. The consequence is that staff at these primary healthcare clinics are not cancer-minded, failing to ensure early diagnosis of all cancers at this level of care. This results in weak referral systems, with poor provider-patient understanding impacting negatively on prompt diagnosis, and on timeous referral to tertiary level treatment and care.

So what do we need? p Properly planned cancer service delivery models focused on making early diagnosis, treatment and care more accessible to rural cancer patients and their families. p Innovative transport solutions for cancer patients who need to travel long distances to access care. p Accommodation for patients and family support at tertiary treatment centres. p Special cancer social support grants for patients, their families and carers on arrival at treatment facilities. p Special dedicated social protection for patients identified with social security needs.

We cannot achieve this without: p Equity of cancer care facilities between provinces, and between urban and rural areas. p Effective referral pathways from primary healthcare to tertiary treatment facilities. p Partnerships with the private sector in respect of provision of cancer treatment closer to where patients live. p Government departments forging partnerships with NGOs and other civil society groupings in respect of transport and accommodation.

healthcare is enshrined in the country’s constitution, but urgent interventions are needed to change the status quo and raise service levels to really reflect the human rights culture of our country. Effective screening by cancer-minded and trained primary healthcare staff, coupled with rapid referral for early diagnosis is required to save people’s lives. Efficient and cost-effective cancer treatment can leverage the maximum out of current resources, and public-private partnerships must also be explored to take advantage of better infrastructural capacity in the private health sector. Further, primary healthcare facilities should be geared to provide ongoing support and care for cancer patients, to minimize direct costs to the patient. The development of better databases, and training of and incentives for oncology personnel should be national priorities from primary to specialist level. Challenge 2: Addressing the practical issues A cancer diagnosis has a significant impact on many aspects of the lives of patients, especially those in rural areas or far from centralized treatment centres. Among these are practical matters like where they will stay if they have to travel for treatment, and how they will get there. A defined patient-public-private partnership (the 4Ps principle) should be in place between all the role players for each province, to ensure patients’ needs are addressed in a sustainable manner. Challenge 3: Financial and social support for cancer patients The national departments of Health and Social Development need to recognize the severe financial strain a cancer diagnosis places on patients and their families, especially the poor. An overhaul of the social protection system is required to address the add-on costs that push patients further into poverty. Specialised financial support schemes are essential to address this gaping hole in the continuum of cancer care. The reality is that a cancer diagnosis can have significant adverse economic implications for poor households, increasing the risk of them becoming destitute if the patient is a breadwinner and their job is threatened, or they lose income due to taking time off work for treatment and recovery. The same applies to the informal caregivers of the patient. Challenge 4: Managing cancer in the workplace While Section 6(1) of the Employment Equity Act 55 of 1998 (EEA) safeguards disabled people and those living with HIV from workplace discrimination, cancer does not appear in any legislation as a form of disability, or an illness to be discriminated against per se. The Cancer Alliance has long called for all companies to develop a workplace policy for life-threatening diseases, including cancer. This certainty about how to deal with cancer at work would significantly reduce the challenges that arise following a cancer diagnosis, providing the patient with information about what they’re entitled to, and giving the company guidelines on how to manage the situation. It would also go a long way to addressing the fact that South Africa’s current labour law framework is not cancer-friendly.

How can we meet the challenge?

While the CCMA draft guidelines dictate that employees must follow medical guidelines to eliminate or bring the cancer under control, they also demand that employers monitor the progress, and reasonably assist and accommodate employees.

Challenge 1: Cancer treatment and care outside of major urban area South Africa has the largest health budget in Africa and the right to

On social benefits, the Basic Conditions of Employment Act 75 of 1997 needs to be amended to accommodate staff with illnesses beyond their control.

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VISION, NOVEMBER/DECEMBER 2017

CALENDAR

CONTACT DETAILS CanSurvive Cancer Support Parktown and West Rand Group :, Contact: 062 275 6193 or cansurvive@icon.co.za Charlotte Maxeke Group: Contact Duke Mkhize 0828522432 Jabulani Group: Contact Sister Bongiwe Nkosi: 0835760622

November 2017 25 25

Wings of Hope, German International School, Parktown. 9:30 for 10.00 Year End Party Bosom Buddies Support Group, Hazeldene Hall, Parktown at 09:30 for 10:00

26

Hospice Wits Tree of Light

27

Cancercare Support Group, Rondebosch Medical Centre, “Personal reflections and celebrations”.

December 2017 6

Cancercare OuteniquaSupport Group, GVI Boardroom,3 Gloucester Ave. George 10:00 - 12:00

6

CanSurvive Charlotte Maxeke Group, Radiation Floor P4.

9

CanSurvive Cancer Support Parktown Group, Hazeldene Hall, Parktown 9:00

13

CancerCareSupport Group, 4th Floor, Rondebosch Medical Centre. Contact: linda.greeff@cancercare.co..za or phone 0219443700 for more info CancerCare Cape Gate Support group: 10h00-12h00 in the Boardroom, Cape Gate Oncology Centre.| Contact: Caron Caron Majewski, 021 9443800 CancerCare Outeniqua, George Support Group. Contact: Engela van der Merwe, 044 8840705, engela.vandermerwe@cancercare.co.za Cancersupport@centurion: Marianne Ambrose 012 677 8271(office) or Henriette Brown 072 8065728 Bosom Buddies: 011 482 9492 or 0860 283 343, louise@mybreast.org.za Venue: Hazeldene Hall, 13 Junction Ave, Parktown, Johannesburg. www.bosombuddies.org.za.

January 2018 17

CanSurvive Cancer Support Parktown Group, Hazeldene Hall, Parktown 9:00 CanSurvive Charlotte Maxeke Group, Radiation Floor P4.

20

CanSurvive Jabulani Group at HapyD, 1432 Buthelezi St.

27

Wings of Hope, German International School, Parktown. 9:30 for 10.00

27

Bosom Buddies, Hazeldene Hall, Parktown, 9:30 for 10:00

7

CanSurvive Charlotte Maxeke Group, Radiation Floor P4.

10 21

CanSurvive Cancer Support Parktown Group, Hazeldene Hall, Parktown 9:00 CanSurvive Charlotte Maxeke Group, Radiation Floor P4.

24

CanSurvive Jabulani Group at HapyD, 1432 Buthelezi St.

7

CanSurvive Charlotte Maxeke Group, Radiation Floor P4.

10

CanSurvive Cancer Support Parktown Group, Hazeldene Hall, Parktown 9:00

Netcare Clinton Support Group 10:00 Netcare Clinton Oncology Centre, 62 Clinton Rd. New Redruth. Alberton. Second Friday each month.

10 21

Wings of Hope, German International School, Parktown. 9:30 for 10.00 CanSurvive Charlotte Maxeke Group, Radiation Floor P4.

CANSA Pretoria: Contact Miemie du Plessis 012 361 4132 or 082 468 1521; Sr Ros Lorentz 012 329 3036 or 082 578 0578

24

Bosom Buddies, Hazeldene Hall, 13 Junction Rd, Parktown

24

CanSurvive Jabulani Group at HapyD, 1432 Buthelezi St.

More Balls than Most: febe@pinkdrive.co.za, www.pinkdrive.co.za, 011 998 8022 PinkDrive: www.pinkdrive.co.za, Johannesburg: febe@pinkdrive.co.za, 011 998 8022; Durban: Janice Benecke: 031 201 0074/082 557 3079 janice@pinkdrive.co.za Cape Town: Ebrahim Osman: 021 697 5650 ebrahim@pinkdrive.co.za

February 2018

Prostate & Male Cancer Support Action Group, MediClinicConstantiaberg. Contact Can-Sir: 079 315 8627 or Linda Greeff: linda.greeff@cancercare.co.za, phone 0219443700 Wings of Hope Breast Cancer Support Group 011 432 8891, info@wingsofhope.co.za CHOC: Childhood Cancer Foundation SA; Head Office: 086 111 3500; headoffice@choc.org.za; www.choc.org.za

March 2018

April 2018

CANSA National Office: Toll-free 0800 226622

Reach for Recovery (R4R) : Johannesburg Group, 011 869 1499 or 072 7633901. Meetings: Lifeline offices, 2 The Avenue, Cnr Henrietta Street, Norwood Reach for Recovery (R4R) : West Rand Group. Contact Sandra on 083 897 0221.

4

CanSurvive Charlotte Maxeke Group, Radiation Floor P4.

Reach for Recovery (R4R) Pretoria Group: 082 212 9933

14

CanSurvive Cancer Support Parktown Group, Hazeldene Hall, Parktown 9:00

24 17

Wings of Hope, German International School, Parktown. 9:30 for 10.00 CanSurvive Charlotte Maxeke Group, Radiation Floor P4.

Reach for recovery, Cape Peninsula, 021 689 5347 or 0833061941 CANSA offices at 37A Main Road, MOWBRAY starting at 10:00

21

CanSurvive Jabulani Group at HapyD, 1432 Buthelezi St.

Reach for Recovery: Durban, Jenny Caldwell, 072 248 0008.t Reach for Recovery: Harare, Zimbabwe contact 707659. Breast Best Friend Zimbabwe, e-mail bbfzim@gmailcom

May 2018 2

Cancer Centre - Harare: 60 Livingstone Avenue, Harare Tel: 707673 / 705522 / 707444 Fax: 732676 E-mail: cancer@mweb.co.zw www.cancerhre.co.zw

CanSurvive Charlotte Maxeke Group, Radiation Floor P4.

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VISION, NOVEMBER/DECEMBER 2017

News in brief Oncology most stressful of specialties Oncology is one of the most stressful of all medical specialties, and among the healthcare professionals on the cancer care team, oncologists are at highest risk for burnout. Highlighting these issues and outlining some strategies to protect against burnout here at the 18th World Conference on Lung Cancer (WCLC) was Dr Maria Flanou, clinical psychologist at the Peter MacCallum Cancer Centre in Melbourne, Australia. “My role is to provide psychological services to people with cancer across the whole cancer trajectory, from diagnosis to end-stage disease,” she said. As part of a multidisciplinary team, the work is “very rewarding, but working in oncology is also very stressful.” The stress in oncology stems from the nature of the disease that is being treated. The work involves repeatedly breaking bad news to patients, witnessing patient deaths as well as severe reactions to and adverse events from treatments, watching patients deteriorate session by session and seeing their physical suffering. In addition, “we often have to manage very complicated situations,” she added, which can include encounters with angry patients or angry families. In addition, there are increasing demands that take up time, and there are often staff shortages.

Regulatory reactions to e-cigarettes have varied around the world. They have been banned in Singapore, Australia, and Canada (although Australia and Canada are now reconsidering this ban). The United Kingdom is “overwhelmingly supportive” of their use. (A Public Health England document concluded that they are 95% safer than cigarettes and are useful for cessation, as reported by Medscape Medical News.) In the United States, the FDA has put off regulating e-cigarettes until 2020. In Japan, e-cigarettes are available but are not permitted to contain nicotine. https://tinyurl.com/ybxaat92

Evaluating immuno-oncology combinations in blood cancers and solid tumours The University of Texas MD Anderson Cancer Centre and Pfizer Inc. today announced that they have entered into a clinical collaboration to study novel combinations of three Pfizer investigational immuno-oncology therapies and other Pfizer agents in the treatment of various solid tumours and hematologic malignancies. “This alliance aims to define patients with solid tumours who may benefit from immunotherapy and to develop therapy resistance strategies,” said Aung Naing, M.D., associate professor of Investigational Cancer Therapeutics, MD Anderson. “The studies are designed to hone in on specific combinations and tumour types, and explore unique mechanisms of response and resistance to immunotherapies. Our comprehensive approach will allow us to study new combinations of immunotherapy and standard therapies for patients with solid tumours in need of new treatment options.”

Lung cancer community: ‘This is our fight’

The alliance includes multiple studies. The first study aims to enroll up to 188 patients with solid tumours, who will be placed in seven different treatment groups of immuno-oncology agents alone or immuno-oncology agents combined with radiotherapy. The second study includes eight different treatment groups and is expected to enroll up to 159 patients with acute myeloid leukemia (AML) undergoing treatment at MD Anderson. Three additional studies are planned to evaluate investigational Pfizer agents in patients with blood cancers.

Smoking is the overwhelming cause of most lung cancers, so control over tobacco should be of ultimate importance to everyone involved in dealing with this disease.

Novel treatment causes cancer to selfdestruct without affecting healthy cells

“This is our fight we cannot deal with lung cancer and not fight against tobacco,” urged Mary Reid, PhD, professor of oncology and director of cancer screening and survivorship at the Roswell Park Cancer Institute, Buffalo, New York, speaking here at a packed plenary session of the 18th World Conference on Lung Cancer (WCLC).

Scientists at Albert Einstein College of Medicine have discovered the first compound that directly makes cancer cells commit suicide while sparing healthy cells. The new treatment approach is directed against acute myeloid leukemia (AML) cells but may also have potential for attacking other types of cancers.

“We have an obligation to fight the use of tobacco products at every turn in every country,” she said.

“We’re hopeful that the targeted compounds we’re developing will prove more effective than current anti-cancer therapies by directly causing cancer cells to self-destruct,” says Evripidis Gavathiotis, Ph.D., associate professor of biochemistry and of medicine and senior author of the study. “Ideally, our compounds would be combined with other treatments to kill cancer cells faster and more efficiently—and with fewer adverse effects, which are an all-too-common problem with standard chemotherapies.”

Together these factors can lead to burnout, she warned. This is often described as complete emotional and physical exhaustion, but there are other elements, including depersonalisation (feeling detached, cynical) and having a low sense of personal accomplishment (feeling unfulfilled and unsatisfied by work). https://tinyurl.com/y7a4pbth

Worldwide, lung cancer is the most common cancer, excluding local skin cancers, and it remains the greatest cause of cancer deaths globally, she reminded the audience. This translates to 1.82 million new cases of lung cancer and 1.59 million deaths a year 19% of all cancer deaths worldwide. There are more than 1 billion smokers worldwide, and because of ageing populations and the global entrenchment of tobacco use, the prevalence of lung cancer will remain unacceptably high for at least several decades, she warned. But the tide is changing. Countries that have enacted tobacco control policies are seeing a decrease in both smoking rates and the incidence of lung cancer.

The newly discovered compound combats cancer by triggering apoptosis—an important process that rids the body of unwanted or malfunctioning cells. Apoptosis trims excess tissue during embryonic development, for example, and some chemotherapy drugs indirectly induce apoptosis by damaging DNA in cancer cells. Apoptosis occurs when BAX—the “executioner protein” in cells—is activated by “pro-apoptotic” proteins in the cell. Once activated, BAX

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VISION, NOVEMBER/DECEMBER 2017 molecules home in on and punch lethal holes in mitochondria, the parts of cells that produce energy. But all too often, cancer cells manage to prevent BAX from killing them. They ensure their survival by producing copious amounts of “anti-apoptotic” proteins that suppress BAX and the proteins that activate it.

Scientists reveal the relationship between sugar and cancer A nine-year joint research project has led to a crucial breakthrough in cancer research. Scientists have clarified how the Warburg effect, a phenomenon in which cancer cells rapidly break down sugars, stimulates tumour growth. This project was started in 2008 under the leadership of Johan Thevelein (VIB-KULeuven), Wim Versées (VIB-VUB) and Veerle Janssens (KU Leuven). Its main focus was the Warburg effect, or the observation that tumours convert significantly higher amounts of sugar into lactate compared to healthy tissues. As one of the most prominent features of cancer cells, this phenomenon has been extensively studied and even used to detect brain tumours, among other applications. But thus far, it has been unclear whether the effect is merely a symptom of cancer, or a cause. While earlier research into cancer cell metabolism focused on mapping out metabolic peculiarities, this study clarifies the link between metabolic deviation and oncogenic potency in cancerous cells. Prof. Johan Thevelein (VIB-KU Leuven): “Our research reveals how the hyperactive sugar consumption of cancerous cells leads to a vicious cycle of continued stimulation of cancer development and growth. Thus, it is able to explain the correlation between the strength of the Warburg effect and tumour aggressiveness. This link between sugar and cancer has sweeping consequences. Our results provide a foundation for future research in this domain, which can now be performed with a much more precise and relevant focus.” https://tinyurl.com/y8z3mpvs

Could opticians refer patients with suspected brain tumours? For many of us, an optician is someone we rely on to test our eyes and to help us buy a new pair of glasses or contact lenses. But what if they could also help spot the early signs and symptoms of benign tumours and rare types of cancer, and refer the patient directly to specialists? The number of people diagnosed with brain, other central nervous system (CNS) and intracranial tumours is low, making up 3 in 100 new cases of cancer diagnosed each year in the UK. But despite being rare, the number of people being diagnosed with these tumours in the UK has increased by almost a third since the early 1990s, mostly in the over 60s. Opticians have the skills, knowledge and equipment to identify warning signs of possible brain or CNS tumours, such as pituitary tumours. Back in 2015, South Tees NHS Foundation Trust in the north east of England became the first NHS trust to test if opticians could play a role in spotting brain tumours earlier. The approach could also help identify patients who’ve had a suspected stroke, or are at risk of a stroke. Supported by the ACE Programme, a joint NHS England, Cancer Research UK and Macmillan Cancer Support initiative in England, the Trust developed a new way for opticians to refer people directly to the neuroscience department at their local hospital for rapid diagnos-

tic tests and treatment. And experience suggests this is worth exploring further.

Frozen gloves, socks reduce CIPN in patients with breast cancer Getting patients with breast cancer to wear frozen gloves and socks for 90 minutes while receiving weekly paclitaxel chemotherapy significantly reduces objective and subjective assessments of chemotherapy-induced peripheral neuropathy (CIPN) across at least 12 treatment cycles, a self-controlled, prospective study indicates. “CIPN is a substantial clinical problem, there is no good prevention of it except to not give the drug or to decrease the dose, and there’s limited benefit for treating established neuropathy,” said Charles Loprinzi, MD, professor of breast cancer research, Mayo Clinic, Rochester, Minnesota. He was not involved in this research and was approached for comment. “So this study is clearly interesting and the data do support the fact that cryotherapy seems to work, but it would be nice to have more data before we can really recommend it,” he added. Co-author Hiroshi Ishiguro, MD, PhD, Kyoto University, Japan, and colleagues report that 44 patients were enrolled in the trial, 36 of whom were evaluable for the analysis at study endpoint. Patients were assessed for symptoms of CIPN at multiple time points: at baseline and before they received each cycle of chemotherapy during outpatient care. Chemotherapy consisted of weekly paclitaxel at a dose of 80 mg/m2. https://tinyurl.com/y8qod57k

FDA approve revolutionary gene-modification treatment During October, the US Food and Drug Administration approved a treatment for certain types of non-Hodgkin lymphoma that uses patient’s own genetically modified immune cells to attack cancer. The treatment, called Yescarta, is made by California-based Gilead Sciences. It’s a form of personalised medicine called chimeric antigen receptor T-cell (CAR-T) therapy, in which some of a patient’s white blood cells are extracted, modified, and then injected back into the patient. Yescarta was approved after a six-month trial of 101 patients with an aggressive form of diffuse large B-cell lymphoma, a cancer that affects immune cells. This type of cancer affects roughly 30,000 Americans annually, and about two thirds of those patients can be cured with a regimen of cancer drugs. Yescarta is for those remaining 10,000 patients. In the recent trial, Yescarta cured 36% of patients completely, and in 82% of patients, their tumours shriveled down to less than half their original size. In August of this year, the FDA approved the first iteration of CAR-T therapy for a form of childhood leukemia. The therapy, called Kymriah (and made by Novartis), had much higher success rates in clinical trials, curing 83% of patients. CAR-T therapies are a possible treatment for patients who would otherwise be out of options, but they come with serious risks. STAT reports that in trials, Yescarta led over 40% of patients to develop anemia (low iron in the blood, essentially), and other common side effects included weakened immune systems from low white-blood cell counts. More worryingly, CAR-T therapy can set off a severe inflammatory reaction that can be fatal without additional immuno-

14


VISION, NOVEMBER/DECEMBER 2017 suppressive drugs. Two patients in this trial also died of severe brain damage associated with the drug. Similar side effects have been seen with the first FDA-approved CAR-T therapy. Yescarta also comes at a hefty price: one dose of your own genetically modified cells costs $373,000. Kymriah is even more expensive, costing $475,000 for treatment. https://tinyurl.com/y8bmyed2

New lymphoedema surgery provides relief to cancer patients A vascularised lymph node transfer, a microvascular procedure created to treat lymphoedema, has been performed at Life Vincent Pallotti Hospital, Cape Town. It is believed to be the first procedure of its kind in South Africa. “Lymphoedema is a painful condition that may develop when cancer blocks lymph nodes or lymph vessels, or alternatively when cancer treatment such as surgery or radiotherapy removes lymph nodes or damages part of the lymphatic system. It develops when lymph fluid isn’t able to drain in the normal way and is collected in an area of the body, causing severe swelling”, explains Dr Conrad Pienaar, specialist plastic and reconstructive surgeon at Life Vincent Pallotti Hospital. Stephanus van Wyk developed lymphoedema in his left arm following treatment for a malignant melanoma. The severe swelling developed soon after he underwent surgery to remove the cancer and despite standard treatments, it did not subside. “My arm was permanently swollen and painful and I had limited movement to carry out daily tasks,” explains Van Wyk, who recently underwent the four-hour surgery to relieve the condition. Lymphoedema is a long-term chronic condition and the swelling can affect patients emotionally, physically and practically. “Not everyone who has cancer or cancer treatment develops lymphoedema and wherever possible, doctors plan cancer treatment to try to avoid damage to the lymph nodes. For those who do suffer from lymphoedema, their quality of life is greatly affected. If lymphoedema patients are suitable candidates for the lymph node transplant surgery, it can significantly improve their daily quality of life,” says Dr Clare Neser, specialist plastic and reconstructive surgeon at Life Vincent Pallotti Hospital. http://www.bizcommunity.com/Article/196/471/169105.html#more

Unleashing one of nature’s original kill switches Small RNA molecules originally developed as a tool to study gene function trigger a mechanism hidden in every cell that forces the cell to commit suicide, reports a new Northwestern Medicine study, the first to identify molecules to trigger a fail-safe mechanism that may protect us from cancer.

DISCLAIMER: This newsletter is for information purposes only and is not intended to replace the advice of a medical professional. Items contained in Vision may have been obtained from various news sources and been edited for use here. Where possible a point of contact is provided. Readers should conduct their own research into any person, company, product or service. Please consult your doctor for personal medical advice before taking any action that may impact on your health. The information and opinions expressed in this publication are not recommendations and the views expressed are not necessarily those of CanSurvive Cancer Support or those of the Editor.

The mechanism - RNA suicide molecules - can potentially be developed into a novel form of cancer therapy, the study authors said. Cancer cells treated with the RNA molecules never become resistant to them because they simultaneously eliminate multiple genes that cancer cells need for survival. “It’s like committing suicide by stabbing yourself, shooting yourself and jumping off a building all at the same time,” said Northwestern scientist and lead study author Marcus Peter. “You cannot survive.” The inability of cancer cells to develop resistance to the molecules is a first, Peter said. “This could be a major breakthrough,” noted Peter, the Tom D. Spies Professor of Cancer Metabolism at Northwestern University Feinberg School of Medicine and a member of the Robert H. Lurie Comprehensive Cancer Centre of Northwestern University. His team discovered sequences in the human genome that when converted into small double-stranded RNA molecules trigger what they believe to be an ancient kill switch in cells to prevent cancer. He has been searching for the phantom molecules with this activity for eight years. “We think this is how multicellular organisms eliminated cancer before the development of the adaptive immune system, which is about 500 million years old,” he said. “It could be a fail safe that forces rogue cells to commit suicide. We believe it is active in every cell protecting us from cancer.” https://tinyurl.com/y8qnvzq3

Researchers show the potential of precision medicine for treating rare cancers For the first time, researchers have been able to identify effective treatments for patients with rare cancers by analysing genes and proteins in their blood and tumours. In a recent study half the patients receiving these targeted treatments saw their rare cancers either stabilise, shrink or go into remission. “To our knowledge, this is the first pilot study to use an individualised precision therapy approach in patients with rare tumours,” says corresponding author Shumei Kato of the University of California (UC) San Diego Moores Cancer Centre. “Our observations suggest that performing genomic analysis on patients with rare tumours can open the doors to new treatments for them.” Although individual rare cancers are uncommon, defined as having an incidence of less than 15 cases per 100,000 cancer cases each year, taken together they account for around 25% of all cancers, making them a serious healthcare issue. Nevertheless, individual rare cancers can be scientifically challenging to study and information about them is often derived from case reports or small-scale studies. They also generally lack treatments developed specifically for them. This makes rare cancers a challenge to manage in the clinic and, possibly due to this, patients with rare cancers have a lower five-year survival rate compared to those with more common cancers. “Patients with rare tumours often have inadequate access to approved drugs or clinical trials,” says senior author Razelle Kurzrock, also from the UC San Diego Moores Cancer Centre. “There are large numbers of patients with rare cancers who need new treatment strategies.” Due to this unmet need for new treatments for patients with rare cancers, Kato, Kurzrock and their colleagues decided to investigate a

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VISION, NOVEMBER/DECEMBER 2017 precision medicine approach. Precision medicine takes advantage of recent technological and scientific advances in our understanding of the genetic changes that cause specific cancers. This has led scientists to realise that similar genetic mutations and alterations can be found in cancers that were previously thought quite distinct. So treatments developed for one type of cancer could prove equally effective at treating a completely different type of cancer, including rare cancers, if they target a genetic mutation common to both.

App to supports cancer patients Global pharmaceutical corporation, Pfizer, is offering cancer patients a free app to help them manage their life with cancer. The LivingWith app, which is available for both iOS and Android devices, forms part of Pfizer’s This is Living with Cancer™ programme, which aims to provide cancer patients with tools and resources to support and help them manage some of the daily challenges they face.

https://tinyurl.com/y72qyvdn

NIH will team up with pharma on immunotherapy research

“Today, more than 15 million people in the US are living with cancer and that number is expected to grow as emerging science and better therapies are likely to increase the number of patients living with cancer as we strive for a cure,” said Global President at Pfizer Oncology, Liz Barrett.

The US National Institutes of Health recently announced a $215 million public-private partnership with 11 pharmaceutical companies in what the agency bills as a significant next step in its cancer moonshot.

“Navigating life with cancer poses many challenges for patients and their families and friends, and we hope these unique programmes can help their journey,” continued Barrett.

The Partnership for Accelerating Cancer Therapies, or PACT, is a fiveyear agreement to push ahead with research that seeks to “identify, develop and validate robust biomarkers — standardised biological markers of disease and treatment response — to advance new immunotherapy treatments that harness the immune system to attack cancer,” the agency said.

The LivingWith app provides patients and caregivers with a tool to organise certain important information in one place. Through the app they can build a network of support from friends and family to get help with daily tasks; record and remember important information from doctor visits; track mood, pain and sleep; organise and store important documents such as test results, medication details and insurance information; and receive information about local events and nutrition articles.

The Foundation for the National Institutes of Health, a congressionally established nonprofit that manages public-private partnerships involving the NIH, will oversee the initiative. “We have seen dramatic responses from immunotherapy, often eradicating cancer completely for some cancer patients,” Dr. Francis Collins, the NIH director, said in a statement. “We need to bring that kind of success — and hope — for more people and more types of cancers, and we need to do it quickly. A systematic approach like PACT will help us to achieve success faster.”

Ultra-personal therapy: Gene tumour boards guide cancer care Doctors were just guessing a decade ago when they gave Alison Cairnes’s husband a new drug they hoped would shrink his lung tumours. Now she takes it too, but the choice was no guesswork. Sophisticated gene tests suggested it would fight her gastric cancer, and they were right. Cancer patients increasingly are having their care guided by gene tumour boards, a new version of the hospital panels that traditionally decided whether surgery, radiation, or chemotherapy would be best. These experts study the patient’s cancer genes and match treatments to mutations that seem to drive the disease. “We dissect the patient’s tumour with what I call the molecular microscope,” said Dr. Razelle Kurzrock, who started a board at the University of California, San Diego, where Cairnes is treated. It’s the kind of care many experts say we should aim for — precision medicine, the right drug for the right person at the right time, guided by genes. There are success stories, but also some failures and many questions. “I think every patient needs it,” especially if cancer is advanced, said Kurzrock, who consults for some gene-medicine companies. “Most people don’t agree with me — yet. In five years, it may be malpractice not to do genomics.” https://www.statnews.com/

The app also connects with wearables and other health apps, and generates personalised graphs and reports that can be shared with the patient’s doctor during medical appointments.

Could opticians refer patients with suspected brain tumours? For many of us, an optician is someone we rely on to test our eyes and to help us buy a new pair of glasses or contact lenses. But what if they could also help spot the early signs and symptoms of benign tumours and rare types of cancer, and refer the patient directly to specialists? The number of people diagnosed with brain, other central nervous system (CNS) and intracranial tumours is low, making up 3 in 100 new cases of cancer diagnosed each year in the UK. But despite being rare, the number of people being diagnosed with these tumours in the UK has increased by almost a third since the early 1990s, mostly in the over 60s. Opticians have the skills, knowledge and equipment to identify warning signs of possible brain or CNS tumours, such as pituitary tumours. Back in 2015, South Tees NHS Foundation Trust in the north east of England became the first NHS trust to test if opticians could play a role in spotting brain tumours earlier. The approach could also help identify patients who’ve had a suspected stroke, or are at risk of a stroke. Supported by the ACE Programme, a joint NHS England, Cancer Research UK and Macmillan Cancer Support initiative in England, the Trust developed a new way for opticians to refer people directly to the neuroscience department at their local hospital for rapid diagnostic tests and treatment. And experience suggests this is worth exploring further.

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