JANUARY 2012

We wish all our readers and friends a wonderful

2012
and hope that you enjoy health, wealth and happiness

Its OK to talk about cancer

Get out there and spread the word! (see page 5)
LIVESTRONG serves people affected by cancer and empowers them to take action against the worlds leading cause of death. LIVESTRONG is a leader in the global movement on behalf of 28 million people around the world living with cancer today. Known for its iconic yellow wristband, LIVESTRONG has become a symbol of hope and inspiration to people affected by cancer around the world. Since its inception, the organisation has raised more than $400 million for the fight against cancer. www.LIVESTRONG.org.

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How about preparing a care basket for a patient

Looking for a way to help your friend or family member through cancer or any serious illness? A care basket may be a good idea! You do not need to spend a lot of money - you can be thoughtful in so many ways. Here are some possible gifts. Mouth tenderness and sores are common so a soft toothbrush, medicated mouthwash and toothpaste might be good. A remedy for constipation and diarrhea which may be used as an alternative to prunes for the days when the pain meds outdo the chemo. Something to make the patient Look good feel better. A foot moisturiser, tube of unscented hand lotion and baby wipes all come in handy for quick freshen ups. Anti nausea (some people swear by ginger products for nausea) and some imodium. Soothing music CDs or books on CD. Cute socks with rubberised/non skid bottoms for when you have to get up and walk around, but dont want to put slippers on. Print a little booklet of cancer survivor stories off the internet. A picture of you and your friend or family member in a frame with a supportive message. One of the most important thing that people can do for the chronically ill is to keep their promises to visit or to help!

Find it on the Web

MRI Sounds
Going for your first MRI? People will warn you about the noises you will hear, but the York Neuroimaging Centre goes one better and provides recordings and explanations of the sounds on their website. Go to https://www.ynic.york.ac.uk/information/mri/sounds and you will be better prepared. The following sounds files are provided to aid users and participants in their familiarisation with the MRI environment. Noises common to all scans: The background noise in the scan room The shimming at the start of each scan The standard YNiC structural protocol has the following scans: a localiser an ASSET calibration an isotropic T1 an isotropic T2 an axial FSE T2 (clinical quality) A typical fMRI acquisition will use the following sequences: a localiser an ASSET calibration The EPI sequence Note that different investigators may use different combinations of these sequences in different orders.

CanSurvive CANCER SUPPORT GROUP

Meetings are held on the second Saturday of each month at 9h00 at

https://www.ynic.york.ac.uk/information/mri/sounds

NCCN Guidelines for prostate cancer patients

The new NCCN Guidelines for Patients for Prostate Cancer provide a framework on which to base treatment decisions. Prostate cancer is a complex disease, with many controversial aspects of management and with a dearth of sound data to support treatment recommendations. Several variables (including life expectancy, disease characteristics, predicted outcomes, and patient preferences) must be considered by the patient and physician in tailoring prostate cancer therapy to the individual patient. These Patient Guidelines aim to provide information that will help a patient talk to his doctor about treatment for prostate cancer. In particular, the guidelines give treatment recommendations based on the characteristics of the cancer, possible side effects of treatments, and a side-by-side comparison of the main benefits and disadvantages of the treatments for prostate cancer. The NCCN Guidelines for Patients for Prostate Cancer can be found at NCCN.org, the website for clinicians, or at NCCN.com, the website for patients, or directly at www.nccn.com/files/cancerguidelines/prostate/index.html.

18 Eton Road, Parktown

(opposite Wits Donald Gordon Medical Centre main entrance)

All patients and caregivers are welcome No charge is made

Enquiries:

073 975 1452

email: jhb@plwc.org.za website: www.plwc.org.za
The Group is run by members of the Johannesburg Branch of People Living With Cancer in association with the Wits Donald Gordon Medical Centre and is open to any patient or caregiver.

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LETTER -

You are responsible for your own well-being

Valentine's Charity Dance

Make a note in your diary for 18 February - the Can-Sir Valentines Charity Dance is a Do Not Miss occasion. Can-Sir, a registered NPO and Cancer organisation, is excited to announce that it will be hosting its inaugural Valentine's Day Charity Dance in the form of a Strictly Smart Dress affair in aid of charity. This is one of their newest fundraising and awareness event, the proceeds of which Can-Sir will use to reach those cancer survivors who are in impoverished areas through literature and awareness talks. Can-Sir wants to spread "Love" and will also be using some of the funds raised at this event, to sponsor an underprivileged childs schooling and stationery requirements for one year, and the handing over ceremony will also be taking place at this event with the idea of adopting more children each year. Venue: SAVIO Hall, Salesians Don Bosco, 310 Lansdowne Road, Rondebosch East Contact: Bianca on +27 (0)72 136-9071 for more information.

Based on some recent experiences, I cannot emphasise more strongly something from a seminar I took many years ago YOU ARE RESPONSIBLE FOR YOUR OWN WELL-BEING! . . . not your doctor; not your oncologist; but you. (Enrolling a caring spouse or caregiver is absolutely allowed but does not ultimately shift the responsiblity). Ask for and read every line of your CAT scan, MRI and other reports. Look especially for comments that may not even relate to your RCC. (Your oncologist may be so focused on the RCC that he/she may miss other issues as they did in my case related to a thyroid problem. ) Get copies of your blood tests. List them on a spread sheet with the name of the test and normal range on the left and the date on top so that you can see sequential changes. Highlight everything that is either out of range or moving significantly from a previous test. Use the web for an explanation of the test, why it is given and what it shows/predicts. Then find out from your doctors why your scores are high, low or moving. Only small deviations can indicate big problems so dont automatically accept that this is only an average and well see what it looks like next time. It was a CRP test that ultimately led to the discovery of my cancer. Doctors save lives, but they are busy people. It is up to you to take responsibility for your own well-being. - Peter C

Support our Can-Sir Spinathon

Spin 4 charity a registered non profit organisation will be hosting a 12-hour Can-Sir Spinathon to create awareness for testicular cancer with our fun Pee Ball. One of the beneficiaries will be the Tygerberg oncology childrens section and in memory of everyone that has lost or being diagnosed with cancer. We will not only be spinning but will be inviting guest speakers from various cancer organisations to come and educate us. The date is set for 28 January and the Spinathon will be held at Willowbridge, Cape Town. There will be lots of activities for the kids and an african painting auction. We invite everyone to come and partake. For more info on how to pre-book your corporate seats please email spin4c@gmail.com or contact Anthony on 0711052074. We look forward to seeing you there!

You dont need to face cancer alone!

We are here to help
You are invited to join us at our Cape Town Cancer Support Groups: Vincent Pallotti Hospital in the GVI Oncology unit: Contact Linda Greeff 0219494060 Panorama Support Groups (morning and evening): Contact Emerentia Esterhuyse 021 944 3850
See the calendar on page 7 for dates or contact the PLWC helpline on 076 775 6099 WE LOOK FORWARD TO MEETING YOU

It is one of the most beautiful compensations of life, that no man can sincerely try to help another without helping himself. - Ralph Waldo Emerson

CONTRIBUTIONS FOR PUBLICATION IN VISION NEWSLETTER

Articles and letters and events submitted for publication in VISION are welcomed and can be sent to: cansurvive@icon.co.za

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Engage With Grace

The Engage with Grace mission isnt an issue we need to raise our fists about - its an issue we have the luxury of being able to hold hands about. Its a mission thats driven by all the personal stories weve heard of people whove seen their loved ones suffer unnecessarily at the end of their lives. Its driven by that ripping-off-the-band-aid feeling of relief you get when youve finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what theyd want for themselves, and knowing you could advocate for these wishes if your loved one werent able to speak up for themselves. And its driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure youre all on the same page. In the words of the amazing Atul Gawande, you only die once! Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace!

The story of Za
Who was it who said, The death of a million is a statistic - the death of one is a story.? Engage with Grace begins with a story - a story about an extraordinary young woman named Rosaria Vandenberg who was 32 when she was diagnosed with stage IV glioblastoma. An extraordinary young woman who was 32 when she died - just 7 short months later - leaving behind a two year old daughter, a doting husband, and a loving loving family. Her experience - as well as her family's experience - is part of what inspired us to start the Engage with Grace movement. Za almost died in the hospital having not been touched or held by her two year old daughter, Alessia, in over two months. Through the force of one person, the family stood up to the system and did what they thought she would have wanted they took her home. And that night - after two months in the hospital, two months of Alessia feeling afraid to hug her mum, lie next to her mum, talk to her mum, touch her mum - on the very first night she was settled at home - Alessia crawled up next to Za in the bed, and for the first time in eight weeks, gave her mum her medicine. For the first time since Za's second surgery, she crawled in to bed next to her. And Za - who had not spoken or opened her eyes in at least a week, woke up fully, and looked her daughter square in the eyes, and loved her in the way that only a mum can. And the next night she died, peacefully, at home. Would our experience have been different if we, as a family, had discussed these difficult choices? If the family had not found the strength to take her home, would Za have ever held her daughter again? These questions are in part what have led to the Engage with Grace movement. we as individuals can affect and the incredibly positive impact we could have collectively. Donate just two minutes to adding just this One Slide to the end of your presentations. Get others involved. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them. Just One Slide, just one goal. Think of the enormous difference we can make together.

About Engage with Grace

Somehow when we get close to death, however, we stop making decisions. We get frozen in our tracks and can't talk about our preferences for end of life care. Studies loom out there - 73% of Americans would prefer to die at home, but anywhere between 20-50% of Americans die in hospital settings. More than 80% of Californians say their loved ones know exactly or have a good idea of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences. But end of life experience is about a lot more than statistics. It's about all of us. Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we're asking people to share this One Slide - wherever and whenever they can at a presentation, at dinner, at their book club. Just One Slide with just five questions to help get us talking. Just One Slide that we as a community could collectively rally around sharing - in meetings, at a conference, or over a drink. This is the slide, and this is what we are asking you to do Download The One Slide from: http://engagewithgrace.org/Download.aspx Share it any time you can - at the end of presentations, at dinner, or at your book club. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself and for your loved ones. Then commit to helping others do the same. Get this conversation started. Let's start a viral movement driven by the change

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CancerVive announce 2012 Cancer Ride to spread the message of hope

The New Year has kicked in and planning has already started for our annual 2012 ride. The exciting part is to choose the route, the towns and decide which communities well visit and where we can make a difference. Our Cancer Ride will take place from 22 - 29 September 2012. Cancer Survivors will be riding motorcycles and drive sponsored back up vehicles. During the Cancer Ride the group will raise awareness and provide education for early detection of the shy cancers (breast, ovarian, cervical, testicular and prostate cancer), and bring a message of hope. We will also continue along a personal path of growth and healing. If you are a Cancer Survivor particularly of one of the Shy Cancers and you would like to participate in our Cancer Ride, please submit your application form before 30 January 2012. It can be downloaded from our website, www.cancervive.co.za Why be shy to talk about cancer.......?

Journal suggests stopping inappropriate, expensive therapies for prostate cancer

The British Journal of Urology International recently published an article by authors from urology departments in Canada and the UK asking, Should we really consider Gleason 6 prostate cancer?. The BJUI commentary stated that There is no doubt that prostate cancer kills, but only a minority of men who are given this diagnosis, die from prostate cancer. In the developed world we are now overdiagnosing and, more importantly, overtreating prostate cancer, a fact for which we will be criticised in generations to come. As well-intentioned urologists, we should have no trouble in justifying our radical therapy for pathologically moderate to high grade, Gleason 7 10 cancers. Despite the opinions of some urological luddites, careful active surveillance is slowly becoming the standard for Gleason 6, particularly for those with low volume disease associated with low serum PSA values, however, many

patients with Gleason 6 still receive radical treatment. We (and others) would like to hypothesise, at least for the sake of discussion, that Gleason 6 pattern prostate pathology is not in itself a lethal prostate cancer, but rather can be associated with a higher risk of potentially lethal prostate cancer (e.g. Gleason 7 or higher) or, alternatively, is a precursor to such prostate cancer. This change in thinking would mean that patients with Gleason 6 scores would not be labelled with a lethal cancer diagnosis and would be less anxious about the appropriate treatment plan of active surveillance. Many patients drop out of active surveillance and pursue radical treatment, not because of rising PSA levels, biopsy results or other forms of disease progression, but because of anxiety. There may be less morbidity (and cost) if patients were not given the cancer-label until they had Gleason 7 disease. http://www.healthnewsreview.org/2012/01/%E2%80%9Cstopinappropriate-expensive-perhaps-even-unethical-radical-therapies-for-a-condition-that-by-itself-does-not-kill%E2%80%9D/

"If you only have a hammer, you tend to see every problem as a nail." - Abraham Maslow

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Side effects: when silence isn't golden

Side effects may occur with any new treatment, including new medications, placement of a new medical device, surgery, or even physical or occupational therapy. We usually think of side effects when we begin to experience bad changes - when the treatment introduces new worrisome symptoms or problems. Most treatments have some sort of side effect associated with them, and many of us may wonder if side effects are simply the price we must pay for a necessary treatment. Side effects should not be taken lightly, for a number of reasons. At their most extreme, side effects raise the alarm when you are having harmful and even potentially fatal treatment reactions. Even somewhat mild side effects like a dry mouth, sleepiness, or minor muscle aches may still interfere with your daily life. Sometimes side effects bother some people so much that they skip doses or give up a treatment altogether, which can derail care and put them at risk for both short- and long-term complications. The Centre for Advancing Health in Florida suggests that before treatment begins, there are a few questions you can discuss with your health care team: What are the common side effects of this treatment? Are there any serious side effects that I should be aware of? When would any side effects start? Are they likely to get stronger or weaken over time? Can I do anything to prevent these side effects? Are there other treatments I can take that don't carry these side effects? How might this treatment interact with any of my other treatments? Do I need any tests to detect "silent" side effects? Who should I notify if I experience unusual or unexpected side effects? Vicki Koenig, MD, a retired family physician in Exmore, Va. She recalled several experiences with a new blood pressure medication used by her patients - and the warning signs caught by those patients. One woman, she says, "came in more than week early for a blood-thinner check because her urine didn't look right. She was extremely sensitive to the drug and was bleeding internally. Had she waited, she would have had dire consequences." If you are not sure if it's a side effect that your care provider should hear about, here are some signs to consider: Your daily life is noticeably disrupted by the side effects. Your symptoms seem to be getting worse. Others around you are expressing concerns about changes they see in you. Past experience with treatments leads you to think this treatment is exceptionally difficult or troublesome. You are thinking of stopping treatment because of side effects.

Package inserts in SA
Each prescription drug must be sold with full information on its known side effects. You can find this full list in many places: included in the drug packaging insert or on a Web site related to the drug. Never follow package insert instructions that contradict what your doctor has told you always check with your doctor first. Keep your package inserts in a safe place so that you can refer to them again in future. Side effects can be listed under Contraindications, or the conditions under which you should not take a medication. They could also be listed under Warnings, which usually describe the most serious and life-threatening side effects. Precautions describe situations such as driving or certain groups of patients such as pregnant women that may affected in some particular way by the medicine. Finally, Adverse Reactions describe all side effects reported during the medication's clinical trials.
often you experience it; let them know if anything makes you better or worse; and share whether the side effect has changed over time. If possible, make a note of the side effects as you experience them, so that you will have a written record to jog your memory and share with your doctor during your next visit.

Learning more about side effects

One of the newest ways to learn about side effects from your treatment is from other patients with the same condition-linked together on sites like PatientsLikeMe.org and other online communities. These sites draw information from participating patients with certain conditions ranging from cancer, multiple sclerosis to HIV/AIDS. Individuals share reports on their health status, their treatments and their side effects over time. While these community reports can be useful, the information on them should always be verified using other trusted sources. The more you know about your side effects, the more easily you can weigh the trade-off between the usefulness of the treatment and the discomfort or even risks of the accompanying side effects. If the side effect is tolerable and not dangerous, the doctor and the patient will often agree to put up with it, but if it's bothersome to the patient, then it's perfectly OK to say something. The doctor doesn't live with you, you do. In some cases, the side effects of a treatment may be so unacceptable that you decide to stop the treatment entirely. If this seems like the best course of action to you, it is important to talk through the decision with your health care team rather than immediately quit the treatment. They can help you work through the pros and cons of stopping treatment, and perhaps point you toward alternative care. Even if you decide to stop treatment against the advice of your team, the discussion can go a long way toward preserving a good working relationship with your health care providers and alerting you and your family to the consequences of an untreated condition. Written by the Health Behavior News Service, part of the Center for Advancing Health and reproduced with their kind permission. www.cfah.org

Even if a side effect doesn't appear to be severe or harmful, discussing side effects can help you and your health care team zero in on a therapy that treats your condition while preserving your quality of life. Share your side effects with your health care team in the same way that you might describe symptoms: give them a basic, but descriptive summary of the side effect; tell them when and how

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Dates to remember
January 2012
14 28 28 30 PLWC/ Johannesburg CanSurvive Cancer Support Group 9h00. Bosom Buddies public meeting. Can-Sir Spinathon - Willowbridge, Cape Town PLWC Vincent Pallotti Oncology Support Group. Laughter is the best medicine.

May 2012
Anti-tobacco campaign month 3 GVI Cape Gate Support Group, Creativity & coping. 5 Bosom Buddies public meeting. 5,11, 12, 19 Reach for Recovery, Pretoria Volunteer training. 8 PLWC Panorama Hospital evening Support Group. Talking about lung cancer. 9 GVi Oncology Port Elizabeth - Langenhoven Oncology Centre - Diet, supplements, alternative treatments. 12 PLWC/ Johannesburg CanSurvive Cancer Support Group 9h00. 17 PLWC Panorama Hospital morning Support Group. Managing the workplace and cancer. 28 Bosom Buddies Pink Pyjama Party. 28 PLWC Vincent Pallotti Oncology Support Group. Tai Chi for stress relief. 31 PinkDrive at Bonitas Comrades Marathon.

February 2012
2 4 4 4 7 8 11 15 15 18 23 25 26 27 GVI Cape Gate Support Group, Cancer and losses. WORLD CANCER DAY PinkDrive - Pink Party at Cogo Bongo, Monte Casino, Fourways Reach for Recovery, Johannesburg Coping with Stress 9.30 PLWC Panorama Hospital evening Support Group. Talking about breast cancer. GVi Oncology Port Elizabeth - Langenhoven Oncology Centre - What is cancer - treatment options. PLWC/ Johannesburg CanSurvive Cancer Support Group 9h00. International Childhood Cancer Day. Reach for Recovery, Pretoria meeting. Can-Sir Valentines Charity Ball. PLWC Panorama Hospital morning Support Group. Stress. Bosom Buddies Valentines Ball. PinkDrive Maritzburg Marathon for Pink Champions. PLWC Vincent Pallotti Oncology Support Group. Getting on with living despite cancer.

June 2012
1/3 2 5 7 9 PinkDrive at Bonitas Comrades Marathon. Reach for Recovery, Johannesburg, 9:30 for 10:00 INTERNATIONAL CANCER SURVIVORS DAY. GVI Cape Gate Support Group, Balanced living. PLWC/ Johannesburg CanSurvive Cancer Support Group 9h00.

CONTACT DETAILS
People Living With Cancer, Cape Town: 076 775 6099, info@plwc.org.za, www.plwc.org.za People Living With Cancer, Johannesburg, CanSurvive Cancer Support Group : 083 640 4949, jhb@plwc.org.za People Living With Cancer, Panorama Support Groups (morning and evening): Emerentia Esterhuyse 021 944 3850 People Living With Cancer, Vincent Palotti Support Group: Linda Greeff 0219494060 or 076 775 6099 GVI Cape Gate Support group: Caron Caron Majewski, Oncology Social worker 021 9443800 GVi Oncology Port Elizabeth ( Langenhoven Oncology Centre) Marina Lourens 0413630581 GVi Oncology Somerset West Group for advanced and metastatic cancers Contact person Oncology social worker Nicolene Andrews 0218512255 Bosom Buddies: 0860 283 343, www.bosombuddies.org.za. Support Group: Christel Klima 0117876443 Cancer.vive, Frieda Henning 082 335 49912, info@cancervive.co.za Can-Sir, 021 761 6070, Ismail-Ian Fife, can-sir@telkomsa.net. Support Group: 076 775 6099. CANSA National Office: Toll-free 0800 226622 CANSA Johannesburg Central: 011 648 0990, 19 St John Road, Houghton, www.cansa.org.za Reach for Recovery (R4R) : Johannesburg Group, 011 648 0990. Reach for Recovery (R4R) Pretoria Group: 082 212 9933 Reach for Recovery: Harare, Zimbabwe contact 707659. MBTM: Noelene@causemarketing.co.za, www.mbtm.co.za Pink Drive: cecile@causemarketing.co.za, www.pinkdrive.co.za Cancer Centre - Harare: 60 Livingstone Avenue, Harare Tel: 707673 / 705522 / 707444 Fax: 732676 E-mail: cancer@mweb.co.zw www.cancerhre.co.zw

March 2012
1 3-4 7 GVI Cape Gate Support Group, Family & friends. CANSA Shavathon. GVi Oncology Port Elizabeth - Langenhoven Oncology Centre - Managing cancer treatent. 9/10 CANSA Relay For Life, Jeppe Boys School at 7pm to 7am. Enquiries to the co-ordinator, Cara Weir-smith, cweirsmith@cansa.org.za, 011 648 0990 9/11 PinkDriveat Cape Argus Pick n Pay Cycle Tour. PLWC/ Johannesburg CanSurvive Cancer Support Group 9h00. 10 13 PLWC Panorama Hospital evening Support Group.Talking about prostate cancer. 15 PLWC Panorama Hospital morning Support Group. Children and how they manage with their parents cancer. 17 Bosom Buddies public meeting. 17/18 CANSA Relay For Life at the Thaba Tshwane (old Voortrekkerhoogte) Sports Grounds. 21 Cape Argus Pick n Pay Cycle Tour 26 PLWC Vincent Pallotti Oncology Support Group. Supportive and palliative care. 31 Reach for Recovery, Johannesburg AGM 9:30 for 10:00

April 2012
Testicular Cancer Awareness Month

5/7 10 11 12 12 14 19 30

PinkDrive at Two Oceans Marathon. PLWC Panorama Hospital evening Support Group. Creative Wellness talking about home care. GVi Oncology Port Elizabeth - Langenhoven Oncology Centre - Emotional impact of cancer. Reach for Recovery, Pretoria meeting. GVI Cape Gate Support Group, Hoping & coping. PLWC/ Johannesburg CanSurvive Cancer Support Group 9h00. PLWC Panorama Hospital morning Support Group. Radiographer talking about radiation. PLWC Vincent Pallotti Oncology Support Group. Finding meaning in my cancer experience.

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BCR-ABL like a key into a lock so as to lock up BCRABL and prevent it from triggering the survival signal in the first place. In some cases BCR-ABL changes its shape and imatinib and nilotinib can no longer fit their key into BCR-ABLs lock. The survival signal remains switched on and these drugs are powerless to turn it off. Survival for these cells means uncontrolled cell growth the root of cancer. But the scientists revealed that a second set of molecular keys, drugs called MEK inhibitors, can lock up a protein called MEK, the final checkpoint in the chain of proteins controlling the survival signals. Nilotinib seems to make resistant cancer cells more responsive to the effects of MEK inhibitors and so the combination of treatments killed these resistant cells. The research suggested that using MEK inhibitors alongside nilotinib would overcome CML resistance to imatinib and nilotinib. Dr Julie Sharp, Cancer Research UKs senior science information manager, said: People diagnosed with leukaemia today are

Around the World

Facebook diagnosis
A paper in the Christmas edition of the Danish Medical Journal attempts to ask whether we can trust our Facebook friends with providing a differential diagnosis. From the English abstract: INTRODUCTION: In contrast to Internet search engines, social media on the Internet such as Facebook, Twitter, etc. reach a large number of people, who are ready to help answering questions. This type of information aggregation has been dubbed crowdsourcing i.e. outsourcing a task to a large group of people or community (a crowd) through an open call. Our aim was to explore whether laypersons via Facebook friends could crowd source their way to a medical diagnosis based on a brief medical history, posted as a status update on Facebook. MATERIAL AND METHODS: The participants posted a brief case story on their Facebook profile and asked their Facebook friends to come up with possible diagnoses. RESULTS: The correct diagnosis was suggested in five of the six case stories, and the correct diagnosis was made after a median of ten minutes. The quality of the responses varied from relevant differential diagnoses to very silly diagnostic suggestions. CONCLUSION: Based on this study, we believe that laypersons can use his or her Facebook friends to identify the need to see a doctor for their symptoms rather than relying on them to give them a specific diagnosis for their symptoms.

Beating resistance to standard leukaemia drug

Cancer Research UK-funded scientists at The Institute of Cancer Research (ICR) have revealed a technique to kill chronic myeloid leukaemia (CML) cells that have stopped responding to a targeted drug, according to research published in Cancer Cell recently. The team carried out the research in CML cells and showed that drugs currently in early development, called MEK inhibitors, combined with nilotinib (Tasigna) destroyed CML cells after they had stopped responding to imatinib (Glivec), the current standard treatment for CML. Imatinib and nilotinib kill CML cells by blocking a strong molecular survival signal keeping them alive. The drugs are designed to fit snugly into a protein called

VISION, JANUARY 2012

four times more likely to survive their disease beyond 10 years as those diagnosed in the early 1970s. http://info.cancerresearchuk.org/news/archive/pressrelease/201112-08-scientists-discover-how-to-beat-drug-resistanceleukaemia

Microwave technique fights lung tumors

Researchers are using high-energy waves similar to those used to make microwave popcorn to destroy inoperable lung tumors. In a preliminary study, the technique, called microwave ablation, eliminated lung tumors in 19 of 28 patients. Eight months later, none of the tumors had come back. Tumors shrank or stopped growing in the other nine patients, says study researcher Claudio Pusceddu, MD, a specialist in radiation and oncology at Oncological Hospital in Cagliari, Italy. During microwave ablation, radiologists place a thin microwave antenna directly into the tumor. An electromagnetic wave then agitates water molecules in the surrounding tumor tissue, producing friction and heat that eventually destroy the tumor. The procedure, costs about $2,000, takes about an hour, and the patient is typically kept overnight in the hospital for observation. US researchers say the technique certainly shows promise. But more patients have to be followed for far longer to see if they stay in remission. The findings were presented at the annual meeting of the Radiological Society of North America. http://www.webmd.com/lungcancer/news/20111128/microwave-technique-may-fight-lungtumors

Dont miss the next Relay For Life it is inspiring!

The first CANSA Relay For Life of 2012 will be at Jeppe Boy's High School on the 9th March from 7pm till 7am. Relay For Life represents HOPE: HOPE - that those lost to cancer will never be forgotten HOPE - that those facing cancer will be supported HOPE - that one day cancer will be conquered HOPE - victory is possible, so CELEBRATE, REMEMBER, FIGHT BACK! For more details contact CANSA on 11 648 0990 or email cweir-smith@cansa.org.za pharmaceutical companies believe will be susceptible to targeted drugs, some of which are now in clinical trials. But those trials arent designed to prove them superior to existing therapies. They usually are tested in addition to existing therapies. That leaves patients and physicians in the dark about what drugs to use first or in what combinations to maximize a patients chance of survival. One of Liberatis last communications concluded as follows: Patient advocacy groups in myeloma spend millions to support research, hoping to promote better care. With public support they should be in a strong position to call for a redefinition of the research agenda, in the interests of patients. Patient groups should be, but will they be? A quick perusal of public filings for the leading US-based advocacy group, the Multiple Myeloma Research Foundation, shows that the bulk of its funding comes from pharmaceutical industry sources and they are all intimately involved in MM treatment. If the pharmaceutical industrys narrow research agenda is the problem, can a patient advocacy group primarily funded by pharmaceutical companies effectively advocate for changing that agenda? I wouldnt count on it.

Thoughts of a dying cancer researcher

In his blog, GoozNews, Merrill Goozner, a well known US writer tells about Alessandro Liberati, the Head of the Italian Cochrane Network, who recently passed away from multiple myeloma, a cancer of the bone marrow. The Cochrane network is a worldwide organisation committed to conducting comparative analyses of medical interventions and in a recent letter to The Lancet, Liberati noted his own experience in searching the medical literature in hopes of identifying what would be the best treatment for his own disease. He noted: I looked at the epidemiology of myeloma studies on ClinicalTrials.gov. On July 31, 2011, a search using the term multiple myeloma identified 1384 studies. Of these, 107 were phase 2/3 comparative studies. However, in only 58 of these studies was overall survival an endpoint, and in only ten of these was it the primary endpoint. No trial was a head-to-head comparison of different drugs or strategies. Multiple myeloma is just one of many cancers that researchers at DISCLAIMER: This newsletter is for information purposes only and is not intended to replace the advice of a medical professional. Please consult your doctor for personal medical advice before taking any action that may impact on your health. The views expressed are not necessarily those of People Living With Cancer or those of the Editor.

Help with hand-foot syndrome (HFS or PPE)

This is a well known and much used remedy often found on patients blogs and list-servs. 1/4 cup water, 1/8 cup pure henna powder, a squirt of lemon juice Bring the water to a boil, then turn off the heat. Add the henna slowly and stir until it is like cream of tomato soup. You will probably use about 1/8th of a cup. Add a squirt of lemon juice. Let it cool. (If you already have cracks, skip the lemon juice. It will sting.) Cover a work area with plastic bags or an old towel (henna stains). Paint a thin layer on your bare feet and hands. I use a foam paint brush to apply it. It takes up to 15 minutes to dry. You can rinse it off (or put socks on and leave it for your next shower). You can start using it any time and as often as you like, but MAKE SURE that you start as SOON as you feel heat in your hands or

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feet. Reapply it if you feel any heat, or when the colour starts to fade in a few days. If you get a burning feeling in your feet and hands from your chemotherapy, this will cool it. That often prevents blisters and cracking, but follow recommendations about cream and socks/gloves too, for the best possible result. Note: henna does not help with neuropathy. Another tip from a patient is to mix Vaseline, glycerine and rose water and apply to feet and socks. and may also put on hands. For women who took the pill for at least 10 years, this risk fell by about half to around 15 per 100,000 per year. Women who had been through a full-term pregnancy had a 29 per cent lower ovarian cancer risk compared with women who had never been pregnantand the bigger the family, the greater the benefit among women who have children, each additional child lowered the risk of ovarian cancer by a further eight per cent.. Among women who had never been pregnant, the risk of developing ovarian cancer was 34 per 100,000 per year. For women who had at least one full-term pregnancy, this risk fell to around 24 per 100,000 per year.

Acupuncture can prevent radiationinduced chronic dry mouth

When given alongside radiation therapy for head and neck cancer, acupuncture has been shown to reduce the debilitating side effect of xerostomia, according to new research from The University of Texas MD Anderson Cancer Center and Fudan University Shanghai Cancer Center. Xerostomia, or severe dry mouth, is characterised by reduced salivary flow, which commonly affects patients receiving radiotherapy for head and neck cancer and a study, published in the journal Cancer recently, reported findings from the first randomised controlled trial of acupuncture for the prevention of xerostomia. The condition impairs quality of life for patients, as it creates difficulties eating, speaking and sleeping, while also increasing the risk for oral infections. Cohen and his colleagues examined 86 patients with nasopharyngeal carcinoma, treated at Fudan University Shanghai Cancer Center. Forty patients were randomised to acupuncture and 46 to the standard of care. Those in the treatment arm received acupuncture therapy three times per week during the seven-week course of radiotherapy. Patients were evaluated before radiotherapy, weekly during radiotherapy, and then again one and six months later. "What was quite remarkable was that we started to see group differences as early as three weeks into radiotherapy for the development of xerostomia, cancer-related symptoms that interfere with quality of life, and saliva flow rates - an important objective measure," said Zhiqiang Meng, M.D., Ph.D., co-principle investigator of the study and deputy chair of the Department of Integrative Oncology, Fudan University Shanghai Cancer Center. Article URL: http://www.medicalnewstoday.com/releases/237520.php

Sun beds: paying good money to risk getting cancer?

The Cancer Association of South Africa (CANSA) is urging the public to help them save lives by signing its petition to ban tanning beds. Skin cancer is the most common form of cancer in South Africa risk levels for South Africans are amongst the highest worldwide with melanoma (the most deadly type of skin cancer) on the rise. The International Agency for Research on Cancer, part of the World Health Organization, includes tanning devices on its list of the most dangerous cancer-causing agents a list that includes plutonium and cigarettes. Businesses in the UK that allow under-18s to use sun beds will face fines of up to 20,000 under new rules. The Sun beds (Regulation) Act 2010 came into force after recent research showed more than two people under the age of 35 are diagnosed with the deadliest form of skin cancer every day in the UK. Overexposure to UV radiation before the age of 18 leads to an increased risk for skin cancer later in life. We therefore strongly believe that tanning beds need to be strictly regulated in South Africa and call on a total ban on the use of tanning beds by individuals younger than 18, says CANSA CEO, Sue Janse van Rensburg. Adds Van Rensburg It is evident that the world is taking note of the deadly consequences of using tanning beds its time our government got on board. CANSA is currently on a drive to collect 50 000 signatures from across the country in order to present it to the Department of Health by February 2012 as part of World Cancer Day. Help them to achieve this by signing the petition today and getting your family and friends involved. Sign up today on www.cansa.org.za

Pill and pregnancy effects on ovarian cancer risk

New research, part-funded by Cancer Research UK, shows that taking the Pill for 10 years can reduce the risk of ovarian cancer by almost half. In fact women who took the Pill for any length of time had an approximately 15 per cent lower risk of ovarian cancer than those who never took it at all - and the risk reduced further in women taking it for longer. The study was recently published in the British Journal of Cancer, and looked at how various reproductive factors affected the risk of ovarian cancer. They found out that: Taking the Pill for more than 10 years had the biggest impact on reducing the risk of the disease, followed by getting pregnant and having more than one child. Among women who used the Pill for a year or less, the risk of developing ovarian cancer was around 28 per 100,000 per year.

Reviews of recent health stories

Many empowered patients rely on Gary Schwitzers HealthNewsReview.org website to get his opinion on the accuracy of news stories about medical treatments, tests, products and procedures. He leads a team of reviewers who grade daily health news reporting by major U.S. news organizations. They explain in easy to understand language just what the story is really about and how valid the journalists version of it is. An example is their review summary on an item which appeared on WebMD, Microwave Technique Fights Lung Tumours which asks such questions as:

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Does the story adequately discuss the costs of the intervention? Does the story adequately quantify the benefits of the treatment/test/product/procedure? Does the story adequately explain/quantify the harms of the intervention? Does the story seem to grasp the quality of the evidence? Does the story use independent sources and identify conflicts of interest? Does the story appear to rely solely or largely on a news release? Does the story compare the new approach with existing alternatives? All of the above were marked Satisfactory However, three items were marked not satisfactory Does the story establish the true novelty of the approach? Does the story establish the availability of the treatment/test/product/procedure? Does the story commit disease-mongering? Reasons are given and explanations of the standards imposed. There are also reviews of books such as the Invasion of Prostate Snatchers and Bad Science: Quacks, Hacks and Big Pharma Flacks Next time you see an apparently incredible breakthrough in cancer treatment announced, have a look what Gary Schwitzer has to say about its validity.

Be safe in the sun!

As part of their Sun Smart campaign, CANSA is giving South Africans a practical way to implement its message: Safe in the sun. You can now monitor the harmful UV-rays you are exposed to with a CANSA UV-Smart Armband that turns darker in colour as the UV-rays intensify. Each shade of colour gives protection recommendations you can follow to avoid sunburn. CANSAs SunSmart Ambassador, Bailey Schneider is encouraging South Africans to be safe in the sun. Shes a successful radio and TV presenter, voice over artist, MC and public figure. In 2009, Bailey was diagnosed with superficial spreading melanoma at the age of 26. Luckily through early detection, it was removed before it spread any further. Bailey gets regular check-ups by her dermatologist every six months to ensure she is still healthy and melanoma-free. for visual imagining. To cover everyone, imagery has to engage all the senses, using sounds, smells, tastes and kinesthetic feel, inside and outside the body -- imagining emotion, too. Clinicians and researchers could prove that guided imagery could reduce the unpleasant side effects of cancer and its treatment (nausea, fatigue, anxiety, pain, stress, depression, fear of medical procedures), and that it could beef up coping ability, quality of life, energy, hopefulness, confidence and motivation. The data kept coming in, and after a couple of decades, guided imagery went from being a tape a few cranky, demanding patients insisted on bringing with them to chemo, to becoming a legitimate adjunctive tool for treatment that pharmas gave out alongside their anti-emetics. In 2011 a randomized, controlled study out of M.D. Anderson (Cohen et al) with men with prostate cancer showed that those who used diaphragmatic breathing and guided imagery had significantly higher levels of natural killer cell cytotoxicity, higher levels of circulating proinflammatory cytokines, and higher tumor necrosis factor-. And while the immune parameters got better and better for the intervention group, they decreased or stayed the same for the controls. http://www.huffingtonpost.com/belleruth-naparstek/guidedimagery-cancerpatients_b_1026296.html?view=print&comm_ref=false

Kauai and CANSA team up this summer

Leading national healthy fast food company, KAUAI, has teamed up with the Cancer Association of South Africa (CANSA) in a bid to make more South Africans be good to their skin this summer. Their partnership has resulted in the development of KAUAIs new Upbeet Berry Smoothie, which promotes healthy skin from the inside out. KAUAI will donate R2 from the purchase of every Upbeet Berry smoothie to CANSA to continue the fight for a cancer-free society. Blueberries, strawberries and blackberries, as well as pomegranate juice and freshly squeezed beetroot juice, were all chosen for the Upbeet Berry Smoothie because of their very high antioxidant concentrations. KAUAI brand ambassador Roxy Louw and her father, exSpringbok Rugby player and skin cancer survivor, Rob Louw support this partnership. Leading a balanced lifestyle and being sensible in the sun is your best chance at reducing your cancer risk. So be good to your skin, look good and feel good this summer by supporting CANSA and buy an Upbeet Berry Smoothie from KAUAI stores before 29 February 2012. If you upload a pic of yourself and your smoothie to KAUAIs facebook page, you could win a stylish pair of Oakley sunglasses. For more information please visit www.kauai.co.za

The science behind guided imagery

Writing in a recent issue of the Huffington Post Psychotherapist, author and guided imagery innovator Belleruth Naparstek discusses the science behind guided imagery. She comments that the past 30 years have seen dramatic, exciting gains in how we use guided imagery with cancer treatment. It turns out that only 55 percent of the population is strongly wired

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