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VISION, MAY 2014 CanSurvive Support Groups opens Midrand branch Out of Africa The LiveStrong Foundation held their annual Leaders’ Convention in Austin, Texas in April and South Africa was represented by Cameron Green and popular CanSurvive team member, Elvis Munatswa. Elvis reports that “The Convention was quite an eye opening experience. It provided space to learn what cancer advocacy is about and the many ways in which it is done. The Convention brought Leaders from across the world to network and share ideas on what it is they do, within the part of the world they are situated. Fundamentally, LiveStrong provides the framework in which Leaders can navigate the cancer advocacy field. Most of all, it was an important meeting where, as advocates, we engaged in debates on what we could do best in our regions. Region 15 (Africa and Pakistan) Leaders were present and made our engagement more relevant - however advocacy in the different countries is not always the same. LiveStrong promised to provide support wherever needed, even though they would not be directly involved. Quite important to this, was the fact that LiveStrong emphasised that as Leaders, our job is not to market lives, but to do our best to serve our communities with relevant projects.” Top pic: Juma Mwesigwa of Tanzania (left) and Elvis Munatswa from South Africa (right) getting to know some of the other Leaders. Below: Cameron Green (South Africa) and Juma with Ahsan Javaid (Pakistan). The launch of the new CanSurvive Midrand Cancer Support Group took place on 3 May at Netcare Waterfall Hospital. Guest speakers were Professor Elna McIntosh, sexologist, and Dr Nicolette Landman, a reconstruction and plastic surgeon. The Group hopes to attract people from the Eastern suburbs as well as from Midrand and Centurion. Meetings will be held on the fourth Saturday of each month. Call our tollfree line for more info 0800 033 337. Cryo-Save South Africa cycles for kids Every year, Cryo-Save South Africa dedicates their Argus team to raising funds for a special cause. This year, the fundraiser, spearheaded by Managing Director, Louis Rehrl raised over R150 000 for the Greys Hospital Paediatric Oncology Unit. The team consisted of staff members, friends and the likes of Derick Hougaard, Arno Jordaan and Bobby van Jaaarsveld who came on board in order to assist in raising funds for such a good cause. They are very grateful to all the sponsors who have donated so generously, the amount achieved substantially exceeded their initial target of R100 000! VISION, MAY 2014 Help wipe out cancer stigma Honey is a new way to fight antibiotic resistance Cancer stigma is a great problem in South Africa, it touches all groups, ages and genders and impacts cancer patients daily. Honey, that delectable condiment for breads and fruits, could be one sweet solution to the serious, ever-growing problem of bacterial resistance to antibiotics, researchers say. From 2010 to 2012 a Cancer Anti-Stigma Initiative was launched in South Africa by the LIVESTRONG Foundation. The object of this project was to reduce stigma associated with cancer through culturally-relevant, targeted messaging whilst also raising awareness of the global cancer burden on society. They conducted a survey in three focus areas, namely the communities of Soweto, Khayelitsha and Mdantsane. There were over 800 respondents and the results clearly showed that stigma was impacting people’s access to screening and treatment. Medical professionals sometimes use honey successfully as a topical dressing, but it could play a larger role in fighting infections, the researchers predicted. Their study was part of the 247th National Meeting of the American Chemical Society (ACS), the world’s largest scientific society. “The unique property of honey lies in its ability to fight infection on multiple levels, making it more difficult for bacteria to develop resistance,” said study leader Susan M. Meschwitz, Ph.D. That is, it uses a combination of weapons, including hydrogen peroxide, acidity, osmotic effect, high sugar concentration and polyphenols — all of which actively kill bacterial cells, she explained. The osmotic effect, which is the result of the high sugar concentration in honey, draws water from the bacterial cells, dehydrating and killing them. With our current survey we aim to gain more information and insight into the role of cancer stigma in our communities . We would like you to complete the appropriate questionnaires on Survey Monkey by following these links: Survey 1 deals with general stigma issues: https://www.surveymonkey.com/s/PTZSW8P Meschwitz, who is with Salve Regina University in Newport, R.I., said another advantage of honey is that unlike conventional antibiotics, it doesn’t target the essential growth processes of bacteria. The problem with this type of targeting, which is the basis of conventional antibiotics, is that it results in the bacteria building up resistance to the drugs. Survey 2 is aimed at people already diagnosed with cancer: https://www.surveymonkey.com/s/67R52K2 Your contribution will assist the Cancer Alliance and its members in planning interventions to address the stigma issues that are preventing our population from accessing cancer screening and cancer treatment proactively, thus resulting in more cases of late diagnosis and unnecessary suffering and death. She said that her team also is finding that honey has antioxidant properties and is an effective antibacterial. “We have run standard antioxidant tests on honey to measure the level of antioxidant activity,” she explained. “We have separated and identified the various antioxidant polyphenol compounds. In our antibacterial studies, we have been testing honey’s activity against E. coli, Staphylococcus aureus andPseudomonas aeruginosa, among others.” Please share these details with as many people as possible to enable us to get a significant number of responses. The survey will be open until the end of June 2014 and the results will be published in August 2014 on the website of the Cancer Alliance and member NGO’s websites If there are any further contributions you wish to make, please contact Linda Greeff, Chairperson of the Cancer Stigma workgroup of the Cancer Alliance at [email protected] or on 021 949 4060. HELP US TO PROVIDE SUPPORT FOR CANCER PATIENTS ASCO NEWS New HER-2 breast cancer guidelines The American Society of Clinical Oncology (ASCO) has issued two clinical practice guidelines on treating women with advanced, HER2positive breast cancer. The first guideline discusses appropriate systemic therapies for treatment while the second guideline provides recommendations for treating brain metastases in women with this type of cancer. Read the full HER2-positive breast cancer guidelines and explore patient resources on Cancer.Net New tools to prevent obesity Obesity has emerged as a leading preventable cause of cancer, as well as a complicating factor in the care of patients with cancer. ASCO has launched a suite of resources to help patients address the role of weight management in cancer care. These new tools are part of a major initiative by ASCO, funded through the Conquer Cancer Foundation, to address obesity as a leading preventable factor in the nation's growing cancer burden. To view these resources and learn more about ASCO's commitment to addressing the obesity-cancer connection, visit www.cancer.net/obesity. 2 VISION, MAY 2014 Improve survival with high vitamin D levels Researchers have again found that higher levels of circulating vitamin D on diagnosis of cancer are associated with significantly better survival and remission rates. The new findings come from a comprehensive meta-analysis involving more than 17,000 cancer patients, which was published online in the Journal of Clinical Endocrinology and Metabolism. Cancer Buddies and Cancer.Vive Mian Li, PhD, graduate student, University of the Chinese Academy of Sciences, Shanghai, China, and multicenter colleagues found that overall survival for colorectal, lymphoma and breast cancer patients in the highest quartile of circulating 25-hydroxyvitamin D levels was significantly better than it was for those in the lowest quartile. GOLF DAY AND DINNER on Tuesday 29 July at Eagle Canyon Golf Club, Honeydew "This study could be considered as the most confirmatory evidence to date supporting an association between circulating 25(OH)D levels and cancer outcomes," senior author Hui Wang, MD, PhD, professor told the Institute for Nutritional Sciences, Chinese Academy of Sciences. Come and join us - prizes, goodie bags, a great meal and excellent company! "Considering that vitamin D deficiency is widespread around the world, our suggestion is to ensure everyone has sufficient levels of this important nutrient — that is, circulating vitamin D levels — greater than 75 nmol/L." For more details contact Grant Pitt at [email protected] or 083 454 9448 According to Dr Wang, researchers tend to consider vitamin D as a cancer chemopreventive agent. In a separate study published in Clinical Cancer Research, vitamin D deficiency was associated with more aggressive prostate cancer in both European American and African American men. These men were undergoing their first biopsy because of an abnormal prostate-specific antigen (PSA) or digital rectal examination (DRE) test. "A lot of laboratory studies have suggested that vitamin D might inhibit the progression of cancers by acting on tumour cells and modulating the tumour microenvironment," he explained. In addition, the biological effects of vitamin D on both bone health and the immune system may help cancer patients better weather difficult treatment regimens and help alleviate adverse reactions. http://www.medscape.com/viewarticle/824462?nlid=56605_184 2&src=wnl_edit_medp_wir&uac=98558SG&spon=17 Pelvic radiation disease • • • • Radiotherapy is highly effective in the treatment of pelvic tumours, and there have been huge improvements in radiotherapy techniques and equipment over recent years. But because of the very nature of the treatment, radiotherapy can affect tissue and other organs in the pelvic region. Sometimes these are called ‘late effects’, although some symptoms may occur at anytime from during treatment to many years later. Some symptoms most frequently noticed by patients with PRD are: • • • • • • • • • • • • • Trouble holding in wind Trouble passing motion out of bottom Having accidents - no control of your bowel Having to wear nappies/pads in case of accidents Radiotherapy also causes changes in other pelvic organs and patients may have some of these problems too: Bladder – frequency, incontinence, urgency, burning while passing urine, and bleeding. Sexuality and sex life - both men and women can experience a loss of desire and some men are unable to maintain an erection. Needing to go quickly to the toilet Not feeling you have emptied your bowel Needing to go more often Bloating, noisy rumblings in your tummy Excess or smelly gas Diarrhoea, loose bowels, smelly stool Constipation Being woken at night to pass a motion Bleeding from the bottom Leaking from the bottom Mucous from the bottom Soiling underclothing Tummy pain, cramps Bones - sometimes radiotherapy causes tiny cracks which often cause pain. Lymphoedema - swelling of the legs caused by a build up of lymph can also happen if the lymph nodes (little filters) have been irradiated (or removed in surgery). What can you do if you are suffering from one or more of the symptoms listed above? If you are still under a cancer clinic, talk to your specialist nurse and/or oncologist about Pelvic Radiation Disease. The Pelvic Radiation Disease Association in the UK has a very helpful website at www.prda.org.uk and you can contact them with questions and/or download their leaflets. 3 VISION, MAY 2014 Dad, you have to inhale 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 My wife calls them “hand-me-ups”... things we inherit from our kids. My ex-fashionable shirt that my son wore in college. Our semi-vegetarian diet my daughter adopted in high school. The dog at my feet that came visiting for the weekend, three years ago. Our lives are enhanced and modified by the most unexpected of teachers, our children. The mentoring of our progeny keeps those of graying years at least partially youthful. Still, I was astonished to hear this week, the words, “Dad, you need to starting doing drugs.” The “dad” being addressed is 93 years old and has advancing cancer. He is tired, nauseas, anxious and sleeps poorly. Though he likely has a number of months to live, he has become withdrawn. Despite my usual medical brew, his incapacitating symptoms are without palliation. Dad is miserable. Enter his daughter with the solution. The “drug” she is talking about is the treatment de jour, marijuana. taken myself, this has been a learning experience as much as any other medical therapy I have administered. As I have become familiar with its use, so have a wide range of patients, and its popularity is increasing. Recently, I saw a 35yo melanoma patient, a 48yo woman with Crohns, a 60yo multiple sclerosis sufferer and an 88yo church-going, right-wing-voting, DAR-attending, great-grandmother and they are all now are rolling and toking. How did this happen? We raise our kids to be good, honest, mature citizens; we drive them to soccer, suffer through years of homework (do you remember dioramas?), and do the whole college obsessivecompulsive tour thing. In addition, above all, we beg our offspring to stay away from pot, pills and addictive mind-altering potions. Now they turn on us, pushing ganja in our time of need. How did we go wrong? Actually, it is we that missed a great opportunity. Marijuana is one of the safest drugs a doctor can order. In the entire world literature, there has never been a documented death by overdose. Its most common side affects are the same as its affects; it makes some people sleepy and dopy. While it may increase the risk of heart problems, especially in the elderly, it does not punch holes in the stomach like aspirin, rot the liver like Tylenol, wipe out the immune system like chemotherapy or any of a myriad list of toxicities that horrifies us all when we read the average medicine’s packaging material. Smoking itself can irritate those with lung issues, but especially shortterm use in patients with serious disease is unlikely to cause permanent pulmonary damage. We do need access to better oral forms, such as oil, for those with emphysema and for use in very sick children. 50% of Americans have inhaled marijuana at some point in their lives. More than 25 million of our neighbors have used it within the last year. Those that imbibe are of a decidedly younger demographic. The oldest citizens, especially those of the Greatest Generation, are much less likely to have experience with cannabis. Fortunately, once again, youth presents the solution. New Jersey’s Medical Marijuana (NJ MMP) programme has been active and growing now for almost two years, making the drug available for select patients (see below). A handful of doctors, of whom I am one, have been dispensing prescriptions for 1/4oz bags. Having never par- On other hand, marijuana really works. I do not know of another drug or treatment that produces such consistent benefit and patient satisfaction. Every other medicine that I have prescribed for any problem, be it pain, nausea, depression or health conditions like hypertension, diabetes or heart disease, is much more likely than marijuana to have serious side effects. My patients report significant improvement in nausea, energy, anxiety, sleep and even pain from illness. They are able to function, eat and be social. While not a treatment for disease itself, for many patients it provides excellent symptom relief. In the words of the stoner’s of old, “This is good s**t.” NJ Medical Marijuana Programme Indications 1. Approved debilitating medical conditions include: p p p p p p Amyotrophic lateral sclerosis Multiple sclerosis Terminal cancer Muscular dystrophy Inflammatory bowel disease, including Crohn’s disease Terminal illness, if the physician has determined a prognosis of less than 12 months of life. So, based the research of one doctor and a couple dozen patients, the medical marijuana experiment is a success. It significantly helps certain patients to feel stronger, happier and I suppose, younger. Another gift, a hand-me-up, from our children. Nonetheless, in the words of one frustrated son whose father refused to do more than hold the precisely rolled joint, “Dad, you have got to inhale.” 2. The following conditions apply, if resistant to, or if the patient is intolerant to, conventional therapy: p p p Palliative care training Seizure disorder, including epilepsy Intractable skeletal muscular spasticity Glaucoma Throughout the year Hospice Wits host various short courses: the 5-day 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. Courses and workshops are also offered at a clients’ premises for groups of more than 10. For further details phone 011 483 9100 or email [email protected]. 3. The following conditions apply, if severe or chronic pain, severe nausea or vomiting, cachexia or wasting syndrome results from the condition or treatment thereof: p p p Positive status for human immunodeficiency virus Acquired immune deficiency syndrome Cancer 4 VISION, MAY 2014 views. Volunteers enjoyed the emphasis on practical, hands-on training, and the mix of PowerPoint presentations, group work and role play proved very successful. Challenges, such as the severe lack of screening and treatment options available, were also identified. Singing along, Swazi style Reach For Recovery National Co-ordinator, Stephné Jacobs, spent a very special time at a training workshop with our sisters across the border in Swaziland earlier this year. This was the first time that SBCN facilitated a training workshop and it resulted in the formation of a peer support group, as well as an action plan for a follow-up meeting. It also signalled the start of what will hopefully be a happy working relationship with RFR. Stephné visited Mbabane at the invitation of the Swaziland Breast and Cervical Cancer Network (SBCN) who asked her to organise training for their volunteers. The rest of the facilitation team consisted of an Oncology Nurse, a Clinical Psychologist, and an Industrial Psychologist. Contact details for the Swaziland Breast Cancer Network are: Lena Preko, email: [email protected]; telephone: +268 2404 9270 South African National Coordinator, Reach For Recovery, Stephné Jacobs, mobile: +27 (0)82 779 2400; email: [email protected] The 12 volunteers who underwent training were given knowledge and skills for peer support service. They also gained a greater awareness and understanding of relevant breast cancer issues. Topics discussed followed the template in the Reach for Recovery Training Manual. Highlights of the workshop included enthusiastic song sessions and lively discussions, in which participants eagerly expressed their Its OK to TALK ABOUT CANCER! Join us at the CanSurvive Cancer Support Group - have a cup of tea/coffee, a chat with us and listen to an interesting talk. Upcoming meetings: 09:00 at MIDRAND - 24 May - Netcare Waterfall City Hospital 9:00 PARKTOWN - 14 JUNE - Hazeldene Hall (opp. Netcare Park Lane Hospital) Enquiries: Chris 083 640 4949 or [email protected] Bernice 083 444 5182 or [email protected] The Group is run in association with the Johannesburg Branch of Cancer Buddies and is hosted by Netcare. The Group is open to any survivor, patient or caregiver. No charge is made. 5 VISION, MAY 2014 But don’t put down the Chianti yet . . . Who can complain to the Registrar of Medical Schemes? Resveratrol, found in red wine, dark chocolate and berries and was believed to confer health benefits but recent studies say that diets rich in antioxidant resveratrol fail to reduce deaths, heart disease or cancer. However, as-yet-unknown compounds in such foods may still be conferring health benefits, researchers say Any beneficiary or any person who is aggrieved with the conduct of a medical scheme can submit a complaint. It is however very important to note that a prospective complainant should always first seek to resolve complaints through the complaints mechanisms in place at the respective medical scheme before approaching the Council for assistance. Excitement over resveratrol followed studies documenting anti-inflammatory effects in lower organisms and increased lifespan in mice fed a high-calorie diet rich in the compound. Complaints can be submitted by any reasonable means such as a letter, fax, e-mail or in person at our Offices from Mondays to Fridays during 08:00 – 17:00. Please click here to download the complaint form. These foods may still be good for you, but resveratrol is not the reason. Despite the negative results, studies have shown that consumption of red wine, dark chocolate and berries does reduce inflammation in some people and still appears to protect the heart. “It’s just that the benefits, if they are there, must come from other polyphenols or substances found in those foodstuffs,” he says. “These are complex foods, and all we really know from our study is that the benefits are probably not due to resveratrol.” Who can you complaint about? The Council for Medical Schemes governs the medical schemes industry and therefore your complaint should be related to your medical scheme. If your complaint is related to any other aspect of the health industry, please contact: For 15 years an international team of researchers has studied the effects of aging in a group of people who live in the Chianti region of Italy. For the current study, the researchers analysed 24 hours of urine samples from 783 people over the age of 65 for metabolites of resveratrol. After accounting for such factors as age and gender, the people with the highest concentration of resveratrol metabolites were no less likely to have died of any cause than those with no resveratrol found in their urine. The concentration of resveratrol was not associated with inflammatory markers, cardiovascular disease or cancer rates. p For complaints against Health Professionals (doctors) – www.hpcsa.co.za p For complaints against Private Hospitals – www.hasa.co.za p For complaints against Nurses – www.sanc.co.za p For complaints against Brokers – www.faisombud.co.za p For complaints in respect of other health insurance products – www.osti.co.za (short term insurance ombudsman) or www.ombud.co.za (long term insurance ombudsman) The study participants make up a random group of people living in Tuscany where supplement use is uncommon and consumption of red wine — a specialty of the region — is the norm. The study participants were not on any prescribed diet. http://tinyurl.com/q7r9zxb http://www.medicalschemes.com/Content.aspx?110 Head and Neck Support Group The CanSurvive Head and Neck Support Group is for anyone who has had trauma to the head or neck – not only cancer related – although that applies to the vast majority. The Group is for patients who are just starting this journey, as well as those who are many years down the treatment and recovery road. LIVESTRONG’s latest innovation: CANCER HACKS Cancer Hacks are tips, tricks, ideas, facts, photos and inspiration—small pieces of digestible content that help make life with cancer a little bit easier every day. The objective is to provide information, share experiences, and help with coping mechanisms. It is run FOR the patients BY the patients. There is always a medical member of the Morningside Head and Neck Oncology Team present and also trained Cancer Buddies. Partners are encouraged to attend the meetings as well. They are ”cures" for the little things during one’s cancer journey that often go overlooked, but can make all the difference—like how to tap into your networks for the help you need or what to bring with you to your first chemo treatment. The informal and supportive meetings are usually held on the first Thursday of each month at Rehab Matters, 1 De la Rey Rd. Rivonia from 18h00 to 20h00, There is also a Facebook group: South African Head and Neck Support Group Visit www.cancerhacks.org and see how other patients are coping with their problems - or maybe you have a Cancer Hack you can share! For more information, contact Kim Lucas, on 082 880 1218 or e-mail: [email protected] 6 VISION, MAY 2014 Dates to diarise 20 CONTACT DETAILS Cancer Buddies Johannesburg branch, and May 2014 Prostate Cancer Support Action Group, MediClinic Constantiaberg 17:45 Speaker Dr Trevor Borchers 24 CanSurvive Cancer Support Group, Netcare Waterfall City Hospital, Midrand 9:00 24 Bosom Buddies, Hazeldene Hall, Parktown 10:00 26 Rondebosch Medical Centre Support Group. GVI Practice 4th floor. 18:00 - 19:30Contact Linda Greeff 082 551 3310 31 WORLD NO TOBACCO DAY CanSurvive Cancer Support Groups : 083 640 4949, [email protected] Cancer Buddies/People Living with Cancer, Cape Town: 076 775 6099, [email protected], www.plwc.org.za GVI Oncology /Cancer Buddies, Rondebosch Medical Centre Support Group. Contact: Linda Greeff 0825513310 [email protected] GVI Cape Gate Support group: 10h00-12h00 in the Boardroom, June 2014 1 NATIONAL CANCER SURVIVORS’ DAY 5 CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00 11 Reach for Recovery, 19 St.Johns Road, Johannesburg 13h30. Speaker: Antoinette du Plessis - Dietician. 12 Cape Gate Oncology Centre, “End of treatment – what now? ” 10h00-12h00 14 CanSurvive Cancer Support Group, Hazeldene Hall, Parktown 9:00 14 Wings of Hope Breast Cancer Support Group at German School, Parktown. 09:30 22 St. John’s Catholic Church Awareness Group, North Riding, 10:30. Subject: Lung cancer CanSurvive Cancer Support Group, Netcare Waterfall City Hospital, Midrand 9:00 28 30 Cape Gate Oncology Centre.| Contact: Caron Caron Majewski, 021 9443800 GVI Oncology Somerset West Group for advanced and metastatic cancers. Contact person: Nicolene Andrews 0218512255 Cancer.vive, Frieda Henning 082 335 49912, [email protected] Can-Sir, 021 761 6070, Ismail-Ian Fife, [email protected] Support Group: 076 775 6099. Bosom Buddies: 011 482 9492 or 0860 283 343, Netcare Rehab Hospital, Milpark. www.bosombuddies.org.za. CanSurvive Head and Neck Support Group, Rivonia, Johannesburg. Contact Kim Lucas 0828801218 or [email protected] Prostate Cancer Support Action Group, MediClinic Constantiaberg. Contact Alan Mitchell on 073 560 3067 or [email protected] Wings of Hope Breast Cancer Support Group 011 432 8891, [email protected] Rondebosch Medical Centre Support Group. GVI Practice 4th floor. 18:00-19:30 Contact Linda Greeff 082 551 3310 St. John’s Catholic Church Awareness Group, enquiries to Pam 011 678 3677 / 083 307 0315 July 2014 3 CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00 CHOC: Childhood Cancer Foundation SA; Head Office: 086 111 3500; [email protected]; www.choc.org.za 10&12CANSA Pretoria Support Group 10:00 32 Lys Street. Rietfontein CANSA National Office: Toll-free 0800 226622 CANSA Johannesburg Central: 011 648 0990, 19 St John Road, 17 CanSurvive Cancer Support Group, Hazeldene Hall, Parktown 9:00 Cape Gate Oncology Centre, “Look Good, Feel Better” CANSA Pretoria: Contact Miemie du Plessis 012 361 4132 or 19 Bosom Buddies, Hazeldene Hall, Parktown 10:00 082 468 1521; Sr Ros Lorentz 012 329 3036 or 082 578 0578 26 CanSurvive Cancer Support Group, Netcare Waterfall City Hospital, Midrand 9:00 28 Rondebosch Medical Centre Support Group. GVI Practice 4th floor. 18:00-19:30 Contact Linda Greeff 082 551 3310 29 Cancer Buddies and Cancer.vive Golf Day and Dinner at Eagle Canyon. Details from Grant Pitt: 083 454 9448, email: [email protected] 12 Houghton, www.cansa.org.za Reach for Recovery (R4R) : Johannesburg Group, 011 487 2895. Reach for Recovery (R4R) Pretoria Group: 082 212 9933 Reach for recovery, Cape Peninsula, 021 689 5347 or 0833061941 Reach for Recovery: Durban, Marika Wade, 072 248 0008, [email protected] Reach for Recovery: Harare, Zimbabwe contact 707659. August 2014 7 CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00 9 CanSurvive Cancer Support Group, Hazeldene Hall, Parktown 9:00 10 St. John’s Catholic Church Awareness Group, North Riding, Breast Best Friend Zimbabwe, e-mail bbfzim@gmailcom PinkDrive: [email protected], www.pinkdrive.co.za Cancer Centre - Harare: 60 Livingstone Avenue, Harare Tel: 707673 / 705522 / 707444 Fax: 732676 E-mail: [email protected] www.cancerhre.co.zw 7 VISION, MAY 2014 limit late side effects for patients,” he added. “Twice-daily radiation might be worth considering in place of concurrent chemoradiotherapy for those patients who are at low risk for distant metastases and those patients who cannot tolerate systemic therapy.” News in brief SOURCE: American Society for Radiation Oncology (ASTRO) Early circumcision could prevent prostate cancer Targeting cancer's thirst for copper Drugs used to block copper absorption for a rare genetic condition may find an additional use as a treatment for certain types of cancer, researchers at Duke Medicine report. Researchers at the University of Montreal and the INRS-InstitutArmand-Frappier have shown that men circumcised after the age of 35 were 45% less at risk of later developing prostate cancer than uncircumcised men. This is one of the findings that resulted from a study undertaken by Andrea Spence and her research directors MarieÉlise Parent and Marie-Claude Rousseau. The researchers interviewed 2114 men living on the Island of Montreal. The researchers found that cancers with a mutation in the BRAF gene require copper to promote tumour growth. These tumours include melanoma, the most dangerous form of skin cancer . "BRAF-positive cancers like melanoma almost hunger for copper," said Christopher M. Counter, Ph.D., professor of Pharmacology & Cancer Biology at Duke University School of Medicine and senior author of the study published inNature. Half of them had been diagnosed with prostate cancer between 2005 and 2009, while the others participated in the study as the control group. The questions covered their lifestyle and medical history, if they were circumcised, and if so, the age at which the operation had been performed. The BRAF gene is involved in regulating cell division and differentiation. When mutated, the gene causes cells to grow out of control. Using animal models and cells, Counter and colleagues found that when they experimentally inhibited copper uptake by tumours with the BRAF mutation, they could curb tumour growth. Across the board, the participants who were circumcised were 11% less likely to later develop a prostate cancer compared to those who weren't. The size of the reduction is not statistically significant. “This proportion reflects what has been shown in other studies,” Parent explained. However, babies who were circumcised before the age of one were 14% less likely to develop prostate cancer. Moreover, the removal of the foreskin at a young age provides protection, over the long term, against the most aggressive forms of cancer. They achieved similar results with drugs used to treat patients with Wilson disease, a genetic disorder in which copper builds up in the tissue, primarily the brain and liver, causing damage. "Oral drugs used to lower copper levels in Wilson disease could be repurposed to treat BRAF-driven cancers like melanoma, or perhaps even others like thyroid or lung cancer," said Donita C. Brady, Ph.D., lead author of the study. Prostate cancer is rare amongst Jewish or Muslim men, the majority of whom are circumcised. While the specific causes of this cancer remain unknown, three risk factors have been identified: aging, a family history of this cancer, and Black African ethnic origins. Already, a clinical trial has been approved at Duke to test the copperreducing drugs in patients with melanoma, although enrollment has not yet begun. Hyperfractionated radiation for head and neck cancer improves local-regional control New pain relief targets discovered Patients with locally advanced squamous cell carcinoma of the head and neck treated with hyperfractionated radiation therapy (HFX) experienced improved local-regional control and, with patients censored at five years, improved overall survival with no increase in late toxicity. Scientists have identified new pain relief targets that could be used to provide relief from chemotherapy-induced pain. Researchers at King's College London made the discovery when researching how pain occurs in nerves in the periphery of the body. Dr Marzia Malcangio, Wolfson Centre for Age-Related Diseases, said: 'We have been investigating and identifying mechanisms underlying The findings were published in the May edition of the International Journal of Radiation Oncology • Biology • Physics (Red Journal). The phase 3 study, the largest fractionation study performed to date, evaluated patients who received standard fractionation (SFX) compared with those who received HFX, accelerated fractionation with a split (AFX-S) or accelerated fractionation-continuous (AFX-C). Do you need a Cancer Buddy? The Cancer Buddies support project emphasises the importance of support while learning to live with cancer, and that this is fundamental to developing a true cancer survivor approach. “This study, one of only a few large studies to have follow-up beyond five years, demonstrates that patients who have head and neck cancers and who are being treated with radiation therapy alone have improved local-regional control and no increase in late toxicity when radiation therapy is delivered twice a day in two smaller doses,” said lead author Jonathan J. Beitler, MD, Winship Cancer Institute, at the Emory University School of Medicine, Atlanta, Georgia. “The decrease in the rate of new cancers was unexpected; however, the large database and the long follow-up provided us with a window into information that had not previously been available about the long-term patterns of head and neck tumours and is particularly heartening.” Talking with someone who has survived cancer and has regained his or her life offers hope and a sense of empowerment. Through empowerment comes a fighting spirit that can assist in building resilience. The service is offered absolutely free via our website at www.cancerbuddies.org.za or our toll-free line, 0800 033 337 and is open to and helps anyone touched by any type of cancer, at any cancer stage, at any age, living anywhere in South Africa. “The results suggest that twice-daily radiation may improve cure and 8 VISION, MAY 2014 pain generation and our findings could help chemotherapy patients who suffer pain related side effects.' National Health Service and the network of Centres across the country supported by Cancer Research UK. One potential side effect of some chemotherapy drugs (such as vincristine) is damage to nerves. This is particularly prominent in hands and feet as the drugs affect nerves in the periphery of the body. This causes pain which doctors treat with painkillers. However, some people find that the pain persists. "This work represents a new approach to delivering stratified medicine research and this collaboration between Cancer Research UK, AstraZeneca, Pfizer and the NHS will be key to overcoming the challenges of delivering it." http://www.medicalnewstoday.com/releases/275666.php?tw Dr Malcangio's team investigated why the chemotherapy drugs were causing pain by studying mice. They found that the pain was caused by the mouse's own immune system responding to damaged blood vessels. Study shows non-hallucinogenic cannabinoids are effective anti-cancer drugs New research has shown that the non-hallucinogenic components of cannabis could act as effective anti-cancer agents. Dr Marzia Malcangio explained: 'The chemotherapy drug was found to cause damage to blood vessels around the nerves. When this happened, immune cells leave the blood flow and enter the nerve to help reduce the inflammation, but they also activate pain. Chemicals released naturally by the immune cells were activating the nerves and producing pain.' The anti-cancer properties of tetrahydrocannabinol (THC), the primary hallucinogenic component of cannabis, has been recognised for many years, but research into similar cannabis-derived compounds, known as cannabinoids, has been limited. However, a study has been carried out by a team at St George’s, University of London, led by Dr Wai Liu and colleagues who carried out laboratory investigations using a number of cannabinoids, either alone or in combination with each other, to measure their anti-cancer actions in relation to leukaemia. To try to prevent the pain, researchers looked at ways of stopping the immune cells entering the nerve. They identified receptors on the outside of the immune cells that could be targeted to stop their exit from blood, constituting new types of pain treatment Dr Marzia Malcangio added: 'We have discovered that the pain responses are caused by local activation of pain nerves by immune cells and that this could be prevented. Our result can be exploited to produce drugs that, given in combination with treatment, may limit the pain experienced by patients during chemotherapy cycles.' Of six cannabinoids studied, each demonstrated anti-cancer properties as effective as those seen in THC. Importantly, they had an increased effect on cancer cells when combined with each other. Revolutionary clinical trial aims to advance lung cancer treatment Dr Liu said: “This study is a critical step in unpicking the mysteries of cannabis as a source of medicine. The cannabinoids examined have minimal, if any, hallucinogenic side effects, and their properties as anti-cancer agents are promising. Cancer Research UK is partnering with pharmaceutical companies AstraZeneca and Pfizer to create a pioneering clinical trial for patients with advanced lung cancer - marking a new era of research into personalised medicines to treat cancer. “These agents are able to interfere with the development of cancerous cells, stopping them in their tracks and preventing them from growing. In some cases, by using specific dosage patterns, they can destroy cancer cells on their own. The 'National Lung Matrix' trial - scheduled to open later this year at centres across the UK - will give researchers unprecedented access to libraries of drugs developed by AstraZeneca and Pfizer, allowing several to be tested at the same time, within one trial. “Used in combination with existing treatment, we could discover some highly effective strategies for tackling cancer. Significantly, these compounds are inexpensive to produce and making better use of their unique properties could result in much more cost effective anti-cancer drugs in future.” Researchers will use the genetics of each lung tumour to identify small groups of patients who, because of the specific genetic changes causing their cancer, are more likely to benefit from a certain drug. The study examined two forms of cannabidiol (CBD), two forms of cannabigerol (CBG) and two forms of cannabigevarin (CBGV). These represent the most common cannabinoids found in the cannabis plant apart from THC. They will then look for signs of improvement, such as increased survival, tumour shrinkage or an alleviation of symptoms. Medicines that show promise in the small groups of patients may be fast-tracked into larger trials involving more patients with the same genetic changes. And new medicines can be added to the existing trial as new experimental treatments filter through from the lab. http://www.alphagalileo.org/ViewItem.aspx?ItemId=135404&Cultur eCode=en Device to prevent chemo-related hair loss The DigniCap, a Swedish device that has been successfully used in Europe since 1999. The silicone cap limits the chemo from reaching and killing off hair follicles and is currently being tested by researchers in New York, California and North Carolina. Over the course of the trial, up to fourteen medicines could be included; up to 12 from AstraZeneca and its biologics research arm MedImmune, and two from Pfizer. These medicines target very specific and often rare mutations, meaning they could offer hope for patients who would otherwise have very limited treatment options. “Cold-cap therapy is empowering,” said Dr. Tessa Cigler, the lead researcher for Weill Cornell’s ongoing clinical trial. “It allows women to maintain their self-esteem and sense of well-being, as well as to protect their privacy. Dr Harpal Kumar, Cancer Research UK's chief executive, said: "This is a very important step forward in the fight against cancer. This partnership is exciting because we're trying to achieve something that none of us could manage alone - targeting treatments towards the patients who we know are the most likely to benefit. It's also a programme that can uniquely be carried out in the UK, because of our The DigniCap sits at room temperature when placed snugly on the patient's moistened head 30 minutes before the chemotherapy infusion begins. 9 VISION, MAY 2014 The cap, with its internal coils, is hooked up to a refrigeration unit which gradually cools the cap down to 37 degrees. The cooling cap is kept on during the chemo infusion, and then for another 1-2 hours after the infusion. To minimise any hair loss, patients are advised to put little stress on the hair and scalp, limit washing hair to two times a week, avoid using heat from blow-dryers, curling irons or rollers. Limit brushing or combing hair or coloring hair. The Weill Cornell Breast Center has an active cold-cap programme. www.cornellbreastcenter.com. http://tinyurl.com/lmuqzzr Immunotherapy breakthrough for GBM Scientists at the QIMR Berghofer Medical Research Institute have used immunotherapy to make a major breakthrough in the treatment of the aggressive brain cancer Glioblastoma Multiforme (GBM). Study leader, Professor Rajiv Khanna, said most of the study participants lived much longer than the six-month prognosis normally given to a patient with recurrent GBM, and some patients showed no signs of disease progression. “It is early days, but this is exciting,” Professor Khanna said. “Survival rates for this aggressive cancer have barely changed in decades. There is an urgent clinical need for new treatments. If this treatment can buy patients more time, then that is a big step forward.” GBM is the most common malignant brain cancer, and despite surgery, radiotherapy and chemotherapy, less than 10% of patients survive beyond five years in Australia. The Phase I trials were conducted at Brisbane’s Wesley Hospital, under the leadership of neurosurgeon Professor David Walker. “Working with patients with malignant brain tumours can be distressing, because we know so many will succumb,” Professor Walker said. “But this new branch of therapy lets us offer some hope that the future is going to be brighter, that new and innovative treatments mean things will hopefully improve in the future. “We have a long way to go, and there is hard work to be done, but we seem to be on the right track, and it is a pleasure to work with scientists at QIMR Berghofer to try to make a real difference.” The research team is now keen to begin the next phase of trials, involving patients at an earlier stage of the cancer’s development. For more information about QIMR Berghofer, visit www.qimrberghofer.edu.au More sleep for women with advanced breast cancer improves survival time A new study reports that sleep efficiency, a ratio of time asleep to time spent in bed, is predictive of survival time for women with advanced breast cancer. Results show that higher sleep efficiency was significantly associated with lower mortality over the ensuing six years, an effect that remained after adjusting for baseline prognostic factors such as age, estrogen receptor status and treatments received. Mean survival was 68.9 months for efficient sleepers compared with 33.2 months for participants with poor sleep efficiency. Further analysis found that a 10 percent increase in sleep efficiency reduced the estimated hazard of subsequent mortality by 32 percent. There was no association between sleep duration and survival. "We were surprised by the magnitude of the relationship between sleep quality and overall survival even after we accounted for medical and psychological variables that typically predict survival," said lead author Oxana Palesh, PhD, assistant professor in the Department of Psychiatry and Behavioral Sciences at Stanford University and research director of the Stanford Cancer Survivorship. "Good sleep seems to have a strongly protective effect, even with advanced breast cancer." Study results are published in the journal Sleep. http://www.medicalnewstoday.com/releases/276347.php?tw Pets and their therapeutic effects Professor Mills, from the University of Lincoln’s School of Life Sciences will be joining a project related to pet dogs and families with autistic children, and also focus on the influence of pets on childhood development in the article for Veterinary Record. Despite a growing body of evidence indicating many benefits surrounding the relationship between people and pets, the authors suggest even more novel interventions using companion animals are possible in preventative healthcare. The team concludes that animal companionship is potentially more cost-effective and socially acceptable than technological solutions. Companion animals should not be considered a luxury or unnecessary indulgence, but rather, when cared for appropriately, they should be seen as valuable contributors to human health and wellbeing and, as a result, society and the broader economy. Pets are often used to support people, but there are few controlled investigations into the effects of human-animal companionship in medical settings, and this is an area that researchers are keen to develop further at the University. Along with reducing overt emotional responses such as anxiety, there is evidence to suggest that animal companionship can be highly influential in reducing a sense of isolation. The constant companionship of an animal has been shown to reduce feelings of loneliness in elderly care home residents. And a further study with patients in palliative care showed that the presence of a dog, cat or rabbit improved the mood of patients. Similar mood changes have also been observed in children with autism and Alzheimer’s patients. The team is now engaged in a long term follow-up of their earlier controlled study, in conjunction with the Parents Autism Workshops and Support Network, examining the effects of pet dog ownership on UK families with an autistic child. Results from the initial study are due to be reported soon in the scientific press. Uniquely, this has examined the effects on the child, primary carer and wider family, since it is hypothesised that all of these might benefit from the companionship provided by a dog. 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 People Living With Cancer, Cancer Buddies, CanSurvive or those of the Editor. 10