2016 vision november newsletter

VISION, NOVEMBER 2016

FIX THE PATENTS The Fix the Patent Laws Coalition, which is made up of the Treatment Action Campaign (TAC), Doctors Without Borders (MSF), Section 27, the Cancer Alliance and the Stop Stock Outs Project (SSP), states, "South Africa is facing pressure from the pharma ndustry to backtrack on IP law reform, which aims to improve access to medicines, in exchange for eligibility for on-going inclusion in the US African Growth and Opportunity Act (AGOA)."

At the time of the campaign, Health Minister Dr Aaron Motsoaledi, likened the attempts to deny South Africans access to medicines to

genocide and called on citizens to fight against such attempts "to the last drop of their blood".

2016 CanSurvive Celebration of Life

While South Africa's proposed patent law reforms explicitly recommend that South Africa should not enter into bilateral trade agreements that may negate the gains attained in multilateral agreements, such as the TRIPS Agreement on patent flexibilities, there are fears that lobby groups such as the American Chamber of Commerce to the US government may be causing the delays in finalising these reforms.

The Celebration was, once again, a resounding success. Thanks are due to the sponsorswho supplied items for the raffle, the auction and the goodie bags, the hardworking committee and our guests.

The speaker was medical oncologist, Jason Naicker, who explained the workings of the ideal Palliative Care Team needed to support cancer patients.

Entertainment was supplied by the talented and popular Christl Weinbeck. The charming MC was Bev du Toit, who is known to so many cancer patients and caregivers for her humerous and very pointed talks, together with CanSurvive Chairperson, Kim Lucas.

More pics on page 8.

Although the text for the recently concluded Trans Pacific Partnership (TPP) agreement has not been formally released, negotiators reported that the US wanted a 12-year data exclusivity period, which would delay the introduction of generic and biosimilar products. It seems agreement was reached on a five-year period.

Pictured above are, more than 1000 activists from the Fix the Patent Laws campaign who marched to the Department of Trade and Industry (DTI) in Pretoria demanding that the DTI take urgent steps to fix South Africa’s outdated patent laws so that everyone can get the medicines they need.

VISION, NOVEMBER 2016

Centurion Group explore their creative side!

At the October meeting of Cancersupport@Centurion members were encouraged to relax and get creative - with very colourful results.

The Group is based at Netcare Unitas Hospital and meets monthly.

More information can be obtained from Marianne Ambrose or Matjatji Machubeng at 012 677 8271 office hours

We talk about cancer!

Join us at a CanSurvive Cancer Support group meetings for refreshments, a chat with other patients and survivors and listen to an interesting and informative talk.

Upcoming meetings: HEAD and NECK Group, Rehab Matters, Rivonia - 1 December 18:00 KRUGERSDORP Netcare Hospital Group - 3 December 09:00 10 December, Parktown Group, Hazeldene Hall (opposite Netcare Parklane Hospital) Enquiries: Mobile 062 275 6193 or email cansurvive@icon.co.za www.cansurvive.co.za : www.facebook/cansurviveSA The Groups are open to any survivor, patient or caregiver. No charge is made.

The Groups are hosted by Netcare.

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VISION, NOVEMBER 2016

CALL TO ACTION

Collective South African Voices for Cancer

Globally cancer kills more people than HIV/AIDS, TB and Malaria.

Cancer is a disease that affects people of all races, all socio-economic groups, all religions, all languages – in the same way. It is predicted that cancer deaths in middle and low income countries will continue to increase due to limited access to cancer services and treatment. Where you live should not determine the outcome of treatment or whether you live! For too long cancer in South Africa has been denied its rightful place on the health priority list.

www.canceralliance.co.za The Cancer Alliance is a collective group of cancer control non-profit organisations and cancer advocates brought together under a common mandate, to provide a platform of collaboration for cancer civil society to speak with one voice and be a powerful tool to affect change for all South African adults and children affected by cancer.

In this Call to Action we, as cancer survivors, say p I am cancer survivor and as such have a lived experience. p I have a voice, I am not voiceless p I have a right to be heard

p Emotional support throughout their journey

p I have the responsibility to make a difference by breaking the silence and speaking up

p Quality cancer care by caring health care professionals We ask all cancer survivors to -

Cancer survivors have the right to:

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Break the silence

p Access to equitable and affordable cancer care for all South Africans

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Stand up

p Be treated by health care professionals that are cancer minded to ensure early detection of cancer

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Speak up

We ask all cancer organisations and healthcare professionals to

p Efficient and quick referral pathways to cancer treatment centres at tertiary hospitals.

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Be active in advocacy

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Be the “Voice of the Voiceless” collectively

p Adequate information about our diagnosis and treatment

Let us change the language and #LET’S TALK ABOUT CANCER

West Rand Hospice opens The Old Oak Hospice Diverse West Rand celebrated its official opening on Thursday, 6 October, after receiving an extensive makeover with the help of the local community and businesses far and wide.

It had been two years since the West Rand last had a hospice and finally the house was opened and named as the first of its kind.

“It was a dream to start the centre with a different approach,” said Ina Meiring, founder of the hospice.

“The hospice is intended to house cancer patients, from 2017 and currently focuses on home visits and the many enquiries received about strengthening mental and emotional health while fighting terminal illnesses.

Ina herself has survived cancer, twice. From her own experience, she realised people do not know where to go for help when they are first diagnosed with cancer.

“Doctors heal the body, but we heal the mental, emotional and spiritual side. I believe cancer isn’t always a death sentence and with the right help, people will be able to survive it or use the time they have left on earth to the fullest” says Ina Meiring.

Her dream was to provide newly diagnosed cancer patients with a safe place where they could rediscover themselves and become mentally strong enough to fight till the disease.

The hospice is able to house 10 patients at a time and day visitors are welcome. This is not the only service the hospice will provide.

Complementary therapies will be offered and as it is proven that more people survive by being active and makeing changes in their lives. Enrol in some of their workshops and therapies – and they will show you how.

For more information about the hospice, contact Ina Meiring on 011 953 4863 or 078 969 7400 or E-Mail: oldoakhospicewestrand@gmail.com.

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VISION, NOVEMBER 2016

Kicking the widow

James C. Salwitz, MD Dr. Salwitz is a Clinical Professor at Robert Wood Johnson Medical School.

One of the most satisfying sports is to make ourselves feel better by degrading another. What better way to make up for our own inadequacy, than to shove someone else’s face in theirs? We see this at work, in our families, in politics and in almost every type of social interaction. Nonetheless, it is particularly painful and tragic when we project our own fear and frailty onto someone that is dealing with the consequences of disease and even death.

Not long ago I sat down with the wife of one of my patients who had recently died of lung cancer. He had been a particularly proud and private person and had kept most of the travails of the disease from friends and family. Happy to give him the dignity and freedom he wished, she shouldered his needs. With him every moment, she was a remarkable and powerful support for over a year. By her love, guidance and care she gave him not only dignity and comfort, but helped him to live longer.

At the end of his life, when the disease was present, but quiet, he wished to return to the land of his childhood, his roots, by visiting his family home in Greece. With great effort she scheduled the trip, organised his medicines, arranged backup medical care and of course escorted him on that final journey. It was a wonderful gift.

Upon arriving in Europe his health deteriorated as the cancer grew explosively and multiple terrible complications followed. Only with great effort was she able, as he wished, to get back to the United States, where he was immediately hospitalised and died three weeks later.

The casket was barely closed, and the funeral crowd drifting away, when it started. His friends and family, their friends and family, saddened by his death and shocked he had not shared his suffering more in life, attacked her. Why had he gone to Greece? Didn’t she know he was sick? Wasn’t it a bad time for a vacation?

They cornered her in that most vulnerable time, those first days when her heart had been ripped out and placed in the coffin. “The airplane killed him.” “The change in climate made the cancer grow.” She took him from his doctors, leaving him to quacks and faith healers who committed him to die. If he had really been so sick, then he would have told them, so the insane voyage killed him. It was her action, her inaction, her desertion, her fixation, her selfishness and even her obsessive love by which she neglected him to death.

Now in truth, she was an angel, the perfect caregiver, who gave everything, including her soul, to the man she loved. It was a time when there were dozens of daily decisions, all of which felt momentous and few of which had lasting effect. They clung to each other and fought for life and hope. However, in the end he died, not because they did not love and did not care; he simply had a nasty metastatic cancer and it killed him.

Her friends and family needed a salve for their guilt at failing to help or to appreciate his needs in life. Through horrible words they sought to save themselves by crushing and belittling her gift. Still, their words cannot be justified and can barely be comprehended.

How often do we carelessly add to another’s grief or fear? “You had breast cancer five years ago? My neighbor died of breast cancer that came back after ten years.” “Your mother had surgery at Main Street Hospital? Aren’t the best surgeons at Hope Hospital?” “Well, what did you expect to happen, you smoked!” “Of course she would have done better, if you had just listened.” “You pulled the tube? I guess that was the right thing to do, but did you hear about the guy who woke up after eight years?”

Obsessed with our own pain and loss, we cannot help but open our

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 mouths and spew out trash, which multiplies suffering. It is a corrupt contribution to the grieving process. Maybe we even think that it helps the victim of our utterance. Perhaps, but I think it often serves only the need to protect our own mortal inadequacy and distance ourselves from empathising with true emotional pain.

There are several lessons. First, you do not need to talk. If you are not sure what to say, don’t. Just being there, a touch, a hug, goes a long way. Second, you cannot fix it. There is nothing you can say to take the grieving person, the scared person, the alone person, from suffering to happy in a couple words. It takes time for us to absorb the loss into our soul. Make your goal simpler; just give support in the moment. Unless you really have a dramatic insight, do not play therapist. Finally, before opening your mouth, connect to your feelings. If you are frightened, anxious, confused or angry and hurt, beware. This is dangerous ground and ripe for you to utter something stupid and hurtful.

In these challenging times, we rarely mean to hurt one another.

However, sometimes, overwhelmed by our own emotional tumult, we give pain, instead of hope. Fortunately, it really is not that difficult to lend support and help healing. It entails thinking a moment about what the loss means to us, thinking about what the loss means to the other and gently holding a hand and heart.

Wings at Netcare Olivedale Wings of Hope were invited by Olivedale Oncology, to participate in their spring party in September.and would like to thank Devi, the manager of the chemo department for her generous hospitality.

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VISION, NOVEMBER 2016 Wayne Wright, a cancer survivor, had the idea of a fundraiser for CanSurvive and Cupcakes 4 Kids with Cancer by holding a Bowls Cancer Challenge at Randburg Bowling Club where he is a member. After three months of planning and arranging amazing donations from local businesses as well as auction prizes of holidays sponsored by Hilton Hotels the date was set for October 28th, a sweltering hot Highveld day.

There were 18 teams and each team had one cancer patient or a cancer survivor in it. Every person that played received a prize. All the prizes were grouped in fours and given a number. Each team drew a ticket and their team received the corresponding prizes. So your team may have come last but received the best prizes. An amount close to R32000 was raised which was shared between the two beneficiaries. A wonderful time was had by all.

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VISION, NOVEMBER 2016

Enhance your holidays and spread your gratitude around

CONTRIBUTIONS FOR PUBLICATION VISION is an e-newsletter for cancer patients and caregivers and we would like to be able to provide information on suitable support meetings anywhere in South Africa so please, let us have your details for 2017.

It’s science, but also common sense: Choosing to focus on good things makes you feel better than focusing on bad things. Here are 10 ways to show gratitude throughout the holidays: 1. Leave handwritten notes for loved ones around the house. It’ll be a pleasant surprise for them.

2. Walk through your home and give thanks to each room, meditate over the good memories created in each section of the house. Thank the furniture and appliances that help you.

3. Tell your pets how grateful you are to have their company in your life.

4. Donate old/unused toys and clothes to families in need or at local charities.

5. Thank your coworkers on the great job they’re doing.

6. Compliment the people you come across in your daily life.

Compliments are small doses of gratitude that affect people in big ways.

7. Give thanks to nature. Take a walk and thank the trees on your street, the birds chirping or the bodies of water nearby. Relish in your natural surroundings. Breathe in the air and appreciate the life it gives.

8. When you eat a meal, give thanks to the food. Welcome how much it’s nourishing your body.

9. Share recipes and traditions with friends and loved ones. Have everyone contribute to the wonderful meal about to be shared on Thanksgiving. Share with them memories and good times you’ve had together.

10. Remember to thank yourself. Thank your body, thank your hard efforts and talents, and thank your spirit and existence in this world.

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

Refreshing summer drink packed with goodness Take advantage of all the great fruits and veggies that are in season this spring - such as the oranges and rhubarbs used in this tasty drink from the American Institute for Cancer Research. The Rhubarb and Orange Refresher is also packed with healthy vitamin A, vitamin C, fibre, and antioxidants. Mix one up and enjoy it on the front porch with family and friends!

Ingredients 3 cups fresh rhubarb, cut crosswise in 1/2-inch slices, about 3/4 lb. : 4 cups cold water : 1 cup orange juice : 4 mint sprigs, for garnish : agarve or honey In large, stainless steel or other non-reactive saucepan, combine rhubarb and water. Cover and bring to boil over medium-high heat.

Reduce heat and simmer 15 minutes. Set covered pot aside to steep for 10 minutes.

Set large strainer over bowl. Pour contents of pot into strainer and drain liquid into bowl. Using back of wooden spoon, press very lightly on rhubarb, just to extract liquid that drains easily. Pressing too firmly will make infusion cloudy. Discard pulp. Pour liquid, about 4 cups, into jar or other container, preferably glass, and let sit until room temperature, then cover and refrigerate for up to 2 days.

Head and Neck Support Group

To serve Refresher, measure 3 cups rhubarb infusion. Pour 1/2 cup into pitcher, add agave or honey, and stir until combined. Pour in remaining rhubarb infusion and orange juice. To serve, divide Refresher among 4 ice-filled, tall glasses. Garnish each glass with mint sprig, if using. For single serving, in a glass, combine 1/4 cup rhubarb infusion with 1 tablespoon agave or honey, and then add remaining 1/2 cup infusion, 1/4 cup orange juice and ice.

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.

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. Partners are encouraged to attend the meetings as well.

Makes 8 servings.

Thank you to Netcare !

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. The next meeting will be on Thursday 1 December. There is also a Facebook group: South African Head and Neck Support Group

CanSurvive Cancer Support Groups, Johannesburg, wish to thank Netcare for their assistance and encouragement.

We value the support and generosity of Netcare and their staff and their commitment to helping us to improve support for cancer patients and their families by providing comfortable and accessible venues and refreshments for our meetings.

For more information, contact Kim Lucas, on 082 880 1218 or e-mail: lct@global.co.za.

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VISION, NOVEMBER 2016

After surgery

Dr Bruce Campbell is a Head and Neck Cancer Surgeon. He has been a leader of the MCW Multidisciplinary Head and Neck Cancer Programme of the Froedtert Cancer Centre. He evaluates patients with tumours of the oral cavity, throat, sinuses, voice box, thyroid, and neck. Read his blog at http://www.froedtert.com/HealthResources/ ReadingRoom/HealthBlogs/Reflections.htm

“Mr. Jordan!” I call loudly into the groggy man’s ear. “You’re in the Recovery Room now. Surgery went fine.”

Mr. Jordan nods but won’t remember anything about this conversation. “Can you open your eyes? Show me your teeth!” His face appears to be moving although it will be difficult to tell how strong the muscles are until the anesthesia wears off.

I head downstairs to the Family Centre and greet the volunteer staffing the desk. “Hello, Mary Ann. Where’s the Jordan family?”

another surgical case to perform and will stop by and talk to him later.” I pause. “What questions do you have for me?”

“Hi, Doctor Campbell. They’re in cubicle three.”

The Family Centre is busy. People read, wait, and talk. A woman finds an outlet to recharge her laptop and a man shouts into his cell phone. Kids shift restlessly between couches and chairs. People watch talk shows loaded with laughter and applause, celebrity guests, and questionable medical advice. There are coffee, cookies, and snacks. There is an illusion of normalcy.

They look at each other. “I think you covered everything. We’ll think of something as soon as you leave.”

Richard is still playing his video game. I poke him. “Hey buddy. Do you have any questions?”

He raises his head toward me although his eyes stay glued to the game.

I find my patient’s family. “Hello, Mrs. Jordan.”

“Hello, Doctor. This is my son, Craig, and his wife, Melissa. That’s my grandson, Richard.”

“No.” “So, Richard, if you don’t ask me a question, then I get to ask you one.”

Craig and Melissa greet me. Richard, who is about seven, looks up briefly and returns his eyes to his video game screen.

He looks at me, his eyes widening. “Ummm,” he stammers, “I can’t think of any!”

“He’s doing very well. There were no surprises.” A sense of relief passes through the family. “We got his cancer out completely. We removed everything we could see or feel. And we were able to save the nerve that moves his face.”

I look at him thoughtfully. “Too bad. What is fifteen minus eight?”

He gapes at his grandmother then back at me. “Ummm, seven?”

Mrs. Jordan grips Craig’s hand. “Let me show you what we found.” I pull out my clipboard with sheets of paper containing a few anatomic diagrams and draw a rough outline of the surgery. “This is the spit gland and the tumour was here. There were a few enlarged lymph nodes nearby.” I sketch them in. “We found the nerve that runs through the gland” – I draw that – “and removed all of the gland sitting on top of the nerve.”

“Nice job, Richard. You’ll see Grandpa soon. You be nice to him, okay?” He nods as his attention returns to his game.

After leaving the Family Centre I swing by the Recovery Room to check on Mr. Jordan. He’s awake now. “Things went great. I talked to your family. You’ll see them soon.”

He nods and smiles. Neither he nor his family will remember much of what I tell them today but I hope my drawing will help them later when questions arise. We will likely go through many of the details again. Understanding what has happened today might help them all get through the upcoming, difficult journey.

The drawing is getting a bit confusing, even to me. “In any case, all of the cancer was removed. We took it out completely.”

I write down the name of the procedure. “He had a superficial parotidectomy with facial nerve dissection and an upper neck dissection. We stage these types of cancers,” – I write this on the sheet, as well – “so this is a T2 N2b M0 Stage 4a mucoepidermoid carcinoma of the parotid.”

HELP CANSURVIVE TO PROVIDE SUPPORT FOR CANCER PATIENTS

Mrs. Jordan frowns at what I have written. “How do you pronounce that?”

I repeat it slowly. “Now you will know what to Google.” She looks at me and, for the first time, smiles.

We talk for a few minutes about his hospital stay and what to expect when they see him. “He has a small drain under the skin.

That will come out in the morning and he will be ready to go home.”

We cover what happens next. “Stitches come out next week then, depending on the pathology report, he will likely need radiation therapy.” I jot it all down. “It won’t be easy but we’re here to support you.”I hand her the diagram with my notes. She folds it carefully and slides it into her purse.

“Mary Ann will let you know when he gets to his room. I have

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VISION, NOVEMBER 2016

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CALENDAR

CONTACT DETAILS

November 2016

CanSurvive Cancer Support Groups - Parktown and West Rand : CanSurvive Head and Neck Support Group, Rivonia, Johannesburg Contact: 062 275 6193

Wings of Hope year end party, Netcare Head Office Auditorium, Sandton, 9:30 for 10:00.

GVI Oncology /Cancer Buddies, Rondebosch Medical Centre Support Group. Contact: Linda Greeff 0825513310 linda.greeff@cancercare.co..za GVI Cape Gate Support group: 10h00-12h00 in the Boardroom, Cape Gate Oncology Centre.| Contact: Caron Caron Majewski, 021 9443800

December 2016 1

CanSurvive Cancer Support West Rand Group, Netcare Krugersdorp Hospital, 09:00

3

CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00

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

GVI Oncology Somerset West Group for advanced and metastatic cancers. Contact person: Nicolene Andrews 0218512255 Can-Sir, 021 761 6070, Ismail-Ian Fife, ismailianf@cansir.org.za Support Group: 076 775 6099.

January 2017 1

CanSurvive Cancer Support West Rand Group, Netcare Krugersdorp Hospital, 09:00

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CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00

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

Cancerbuddies@centurion: Marianne Ambrose 012 677 8271(office) or Henriette Brown 0728065728 Pastoral Counsellor More Balls than Most: febe@pinkdrive.co.za, www.pinkdrive.co.za, 011 998 8022

February 2017 1

CanSurvive Cancer Support West Rand Group, Netcare Krugersdorp Hospital, 09:00

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CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00

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

Prostate & Male Cancer Support Action Group, MediClinic Constantiaberg. Contact Can-Sir: 079 315 8627 or Linda Greeff 0825513310 linda.greeff@cancerbuddies.org.za Wings of Hope Breast Cancer Support Group 011 432 8891, info@wingsofhope.co.za PinkDrive: www.pinkdrive.co.za, Johannesburg: febe@pinkdrive.co.za, 011 998 8022; Cape Town: Adeliah Jacobs 021 697 5650; Durban: Liz Book 074 837 7836, Janice Benecke 082 557 3079

March 2017 1

CanSurvive Cancer Support West Rand Group, Netcare Krugersdorp Hospital, 09:00

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CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00

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

Bosom Buddies: 011 482 9492 or 0860 283 343, Netcare Rehab Hospital, Milpark. www.bosombuddies.org.za.

CHOC: Childhood Cancer Foundation SA; Head Office: 086 111 3500; headoffice@choc.org.za; www.choc.org.za CANSA National Office: Toll-free 0800 226622 CANSA/Netcare Support Group 10:00 Clinton Oncology Centre, 62 Clinton Rd. New Redruth. Alberton. Second Friday each month.

April 2017 1

CanSurvive Cancer Support West Rand Group, Netcare Krugersdorp Hospital, 09:00

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

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CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00

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

Reach for Recovery (R4R) : Johannesburg Group, 011 869 1499 or 072 849 2901. Meetings: Lifeline offices, 2 The Avenue, Cnr Henrietta Street, Norwood Reach for Recovery (R4R) : West Rand Group. Contact Sandra on 011 953 3188 or 078 848 7343.

May 2017 1

CanSurvive Cancer Support West Rand Group, Netcare Krugersdorp Hospital, 09:00

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CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00

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

Reach for Recovery (R4R) Pretoria Group: 082 212 9933 Reach for recovery, Cape Peninsula, 021 689 5347 or 0833061941 CANSA ofďŹ ces at 37A Main Road, MOWBRAY starting at 10:00 Reach for Recovery: Durban, Marika Wade, 072 248 0008, swade@telkomsa.net Reach for Recovery: Harare, Zimbabwe contact 707659.

June 2017 1

Breast Best Friend Zimbabwe, e-mail bbfzim@gmailcom

CanSurvive Cancer Support West Rand Group, Netcare Krugersdorp Hospital, 09:00

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

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VISION, NOVEMBER 2016 like poking holes into the area around the cancer cells and allowing it to spread,” he said.

News in brief

Hill focused on blocking the release of exosomes, preventing the relay of information from supporting cells to cancer cells — which increased the efficacy of chemotherapy. This recently published study suggests that using an exosome blocker, which is nontoxic, in combination with standard-of-care chemotherapy will help those with pancreatic and many other cancers as well.

New discovery paves way for pancreatic cancer treatment The majority of pancreatic cancer cases have proven to be resistant to chemotherapy and unresponsive to drug treatments found to be effective in other types of cancer.

http://tinyurl.com/zo4yhxr

Bioethicists challenge doctors' right to refuse care

Now, patients suffering from pancreatic cancer may soon face better treatment options due to the latest discovery by Dr. Reginald Hill, Archibald Assistant Professor of Cancer Biology at the University of Notre Dame and researcher at the Harper Cancer Research Institute. Hill’s research focuses on drugs that are already approved by the FDA to find out why those drugs are not working in patients with pancreatic cancer.

In a recent article, the Editors-in-Chief of two leading ethics journals stress that there should be better protections for patients from doctors' personal values as well as more severe restrictions on the right of clinicians to conscientious objection, particularly in relation to assisted dying.

“The bulk of a pancreatic cancer tumour is made of approximately 10 percent cancer cells and 90 percent supporting cells. Somehow, the supporting cells have figured out how to survive the chemotherapy,” Hill said. “Microscopic vesicles called exosomes, bubbles with genetic material released by cells during chemotherapy exposure, are released from supporting cells, educating the cancer cells on how to survive, resulting in a tumour becoming chemoresistant.”

They add that doctors can campaign for policy or legal reform and they can provide advice with reasons based on their values, but they have no claim to special moral status that would permit them to deny patients medical care to which these patients are entitled.

"Conscientious objection cases are hitting the courts in many countries, and it's high time to change the status quo to a situation where patient needs are given clear priority over doctors' idiosyncratic views of the universe," said Professor Udo Schuklenk, coauthor of the Bioethics article. "Doctors' subjective moral opinions must not be given greater significance than their professional medical obligations to patients. They promise in their graduation cere-

Whilst most new research has focused on destroying supportive cells, these studies concluded that when the supportive cells were attacked, patients actually developed more advanced cancer. “It was

Choice of treatment for squamous cell carcinoma of the head and neck The quality of life for patients following a diagnosis of squamous cell carcinoma of the head and neck can be greatly affected by the choice of treatment modality. This finding may determine the recommended plan for selected patients.

An article in a recent issue of Plastic and Aesthetic Research examines a series of 45 studies which rate the patient's perspective on quality of life following various treatment modalities. It is suggested that the subsequent impact on quality of life can be a useful tool in individualising treatment for selected patients. The author, Dr. Cristina Hernández-Vila, is a maxillofacial surgeon in the Department of Oral and Maxillofacial Surgery at the University Hospital Infanta Cristina in Badajoz, Spain.

Squamous cell carcinoma of the head and neck is one of the most common cancers worldwide. The survival rate has improved dramatically over the past 20 years secondary to the development of specialised surgical techniques, including microvascular reconstruction and transoral robotic surgery, and adjuvant therapy, including chemotherapy and radiation treatment. While microsurgical reconstruction in particular has allowed an increasing number of salvage cases to be performed, its effect on the patient's quality of life remains controversial.

Health-related quality of life (HRQOL) is defined by the Centres for Disease Control (CDC) as an individual's or a group's perceived physical and mental health over time. Assessing the HRQOL is valuable in that it allows the physician to potentially select the optimal treat-

ment for an individual patient based not only on efficacy, but also on any associated side effects. Survivors of head and neck cancer in particular can face debilitating side effects from treatment, including difficulty swallowing, airway obstruction, speech impediments, chronic infections, fistulae (connections between the oral mucosa and skin), aspiration, and the need for a permanent tracheostomy.

Various tools have been developed to collect patient-reported quality of life outcomes. The University of Washington (UW) Quality of Life Instrument, for example, assesses 12 domains: pain, appearance, activity, recreation, swallowing, chewing, speech, shoulder symptoms, taste, saliva, mood, and anxiety. The evaluated studies generally demonstrated that the sensation of taste is frequently affected by the combination of chemotherapy and radiotherapy, while mouth dryness and dental problems tend to occur following radiation therapy alone. Both surgical patients and those treated with radiation alone note post-treatment difficulty with chewing and taste. Newer techniques, such as transoral robotic surgery, have shown better preservation of quality of life while achieving the same long-term results.

While not every patient will be a candidate for conservative treatment or robotic surgery, Dr. Hernández-Vila has demonstrated that considering treatment alternatives for patients diagnosed with squamous cell cancer of the head and neck may have significant ramifications on their quality of life.

Article: http://parjournal.net/article/view/1384

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VISION, NOVEMBER 2016 monies that the patient comes always first - it's time to live up to that promise."

All for one, and one for all!

Patient power at ESMO 16

https://www.eurekalert.org/pub_releases/2016-10/wbcd102816.php

Vitamin D deficiency may raise bladder cancer risk

I had no preconceived idea of what ESMO 16 would be like, I applied with an open mind. How would it differ to other conferences in terms of the patient advocacy track would be the litmus test for me as a patient but also an advocate.

Could vitamin D have another feather in its cap? As concerns grow regarding adequate vitamin D intake, low levels have now been linked to a risk of bladder cancer, according to results presented this week at the Society for Endocrinology conference in the United Kingdom.

The Patient Track at ESMO (European Society for Medical Oncology) made it feel I had a right to attend the conference – funny considering I am the one with the disease, the whole conference was based on!! But it has felt that way in the past, like you are being allowed to watch – this was different. This was not just for the medics, what we as a group had to say was just as important and relevant as anything that was revealed at the scientific presentation sessions. The topics covered were wide ranging and engaging, they ran not in parallel with the scientific sessions, but were given proper respect within the running order and it showed.

The findings add to a body of evidence suggesting that low vitamin D is detrimental to health.

Some vitamin D comes from the diet. Good sources include fatty fish and fish oil, dairy products, mushrooms, liver, and egg yolks.

However, it is mostly synthesised when the body is exposed to sunlight. Dietary sources alone cannot normally provide sufficient vitamin D.

There was overflow needed for most Patient Track sessions, and those that were attending to listen were not just Patient Advocates, but the Oncologists, the Researchers, and the Pharma representatives. That’s because what we have to say is important and well informed – this is not our job it is our lives, so what could be more important to us?

Vitamin D helps the body to maintain healthy levels of calcium and phosphates. Low levels have been linked to a range of health problems.

In children, it can lead to bone deformities, such as rickets.

Concentrations tend to decrease with age, and, in time, a lack of vitamin D can lead to osteoporosis, especially in postmenopausal women.

Often the general public don’t understand the complexities of difference in cancer until you get one. It’s not a topic one reads up on for fun, most only keep up if they are personally connected.

Also, all cancers are not created equal – it can become all too apparent that maybe you didn’t get the one with the most support or media air time or the most funding attached to researching it. But at the ESMO patient’s track this year I didn’t feel any of that. I felt instead part of a movement, a revolution of sorts that brought us all together bound by the one thing we have in common: a deep rooted desire to achieve the best for patients no matter what type of cancer they have. We are all in the same boat, there was no paddling your own canoe at ESMO.

Low levels have also been linked to cognitive impairment, cardiovascular disease, cancer, and autoimmune conditions. http://www.medicalnewstoday.com/articles/313933.php

Neutrophils key to harnessing anti-tumour immune response from radiation therapy Combining targeted radiation therapy with a neutrophil stimulant enhances anti-tumour immunity, according to new research into cancer immunology at UT Southwestern Medical Centre.

Did I learn anything from my experience? YES. I am more confident in my connection now to Europe in my approach to my advocacy: I can reach out to many different branches of cancer communities, and advocacy support networks across the continent, and get help and information that’s still relevant to my community. We can help influence change that benefits patients wherever they live. Together, in solidarity we can achieve much more, we can work for equality of access and support for all, regardless of our cancer type or geographical location, we don’t leave anyone behind it’s a sort of unwritten rule, we go back to pick them up and carry them with us, all for one and one for all.

Radiation therapy is one of three core modalities to treat cancer.

Researchers found that radiation therapy targeted against a tumour can act as a "cancer vaccine" by causing neutrophil-mediated tumour cell death that alerts the immune system to fight the cancer cells at other anatomical sites.

The so-called "abscopal effect," in which radiation therapy delivered to a primary site of cancer also results in shrinkage or elimination of cancer cells in non-irradiated metastatic sites has been observed for decades.

"The abscopal effect is only seen sporadically, but when it does happen, the effect induces a long-lasting, anti-tumour response in patients," said senior author Dr. Raquibul Hannan, Assistant Professor of Radiation Oncology and a member of the Harold C. Simmons Comprehensive Cancer Centre. "Our study in mice was designed to understand this phenomenon and identify strategies to enhance it."

Study results show that neutrophils, the most abundant white blood cell in the body, are key players in the radiation-induced antitumour immune response. In the absence of radiotherapy, cancer cells transform neutrophils into tumour-associated neutrophils or TANs to help promote cancer cell growth. Radiation therapy, in

Kay Curtin also blogs at https://irishmelanomapatients.wordpress.com/ addition to destroying TANs, recruits new neutrophils into the tumour. The radiation-induced neutrophils (RT-Ns) attack the tumour cells by producing molecules that damage them. The study further demonstrates how RT-Ns are also key players in generating a downstream tumour-specific, T cell-mediated anti-tumour immune response.

"To our knowledge this is the first study to identify RT-Ns and to demonstrate their anti-tumour activity via both innate and adap-

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VISION, NOVEMBER 2016 tive immune responses," said Dr. Tsuguhide Takeshima, Instructor in Radiation Oncology and the lead author on the report.

E-cigarettes under review

Importantly, the researchers were able to discover a way to enhance the tumour killing capacity of the RT-Ns by administering G-CSF (Granulocyte-colony stimulating factor), a naturally occurring protein (cytokine) in the body that stimulates bone marrow to produce more white blood cells including neutrophils. In the clinic, G-CSF is widely used to treat blood cell deficiencies in patients receiving chemotherapy. Researchers found that the combination of G-CSF and RT-Ns potentiated the anti-tumour immune response, presumably by inducing a more robust neutrophil response.

"E-cigarettes are now the most commonly used tobacco product among U.S. youth, and the increases in e-cigarettes' perceived safety mirrors rapid increases observed in their use," said lead researcher Dr. Stephen Amrock, from the department of medicine at Oregon Health and Science University in Portland.

Children who use e-cigarettes are more likely than those who do not to go on to use traditional cigarettes, Amrock added.

"Concern exists that e-cigarettes are re-normalising smoking," Amrock said. "Children and parents need to understand that these products contain nicotine and are potentially harmful, both now and because they have been linked to later cigarette use."

"We think these are exciting finding that should be easily translatable to the clinic since G-CSF is routinely used to treat neutropenia," said Dr. Ellen Vitetta, Professor of Immunology and Microbiology, and holder of The Scheryle Simmons Patigian Distinguished Chair in Cancer Immunobiology, and a coauthor on the publication.

"These results provide support for evaluating the combined use of radiation therapy and G-CSF in pre-clinical and clinical settings" said Dr. Hannan. "Our long-term goal is to eliminate the sporadic nature of the abscopal effect of radiation therapy and dependably induce the response every time." http://www.medicalnewstoday.com/releases/313085.php

Results of major UK trial for prostate cancer treatment Active monitoring of prostate cancer is as effective as surgery and radiotherapy, in terms of survival at 10 years, reports the largest study of its kind.

The ProtecT trial, led by researchers at the Universities of Oxford and Bristol in nine UK Centres, including Cardiff University, is the first trial to evaluate the effectiveness, cost-effectiveness and acceptability of three major treatment options: active monitoring, surgery (radical prostatectomy) and radiotherapy for men with localised prostate cancer. Researchers at Cardiff University designed and led the radiotherapy arm of the trial.

Results show that all three treatments result in similar, and very low, rates of death from prostate cancer. Surgery and radiotherapy reduce the risk of cancer progression over time compared with active monitoring, but cause more unpleasant side-effects.

The team found that survival from localised prostate cancer was extremely high, at approximately 99%, irrespective of the treatment assigned. They also found that surgery and radiotherapy caused unpleasant side-effects, particularly in the first year after treatment.

There was some recovery from side-effects over two to three years, but after six years twice as many men in the surgery group still experienced urine leakage and problems with their sex life, in com-

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.

http://tinyurl.com/h2sl2lw parison with those in the active monitoring and radiotherapy groups. Radiotherapy caused more bowel problems than surgery or active monitoring.

Overall quality of life, including anxiety and depression, were not affected by any treatment at any time. Half of the men stayed on active monitoring over the 10-year period and avoided treatment side effects. http://tinyurl.com/j43amt4

FDA warns ovarian cancer tests not reliable Screening tests for ovarian cancer are not reliable and should not be used according to the US Food and Drug Administration.

"Despite extensive research and published studies, there are currently no screening tests for ovarian cancer that are sensitive enough to reliably screen for ovarian cancer without a high number of inaccurate results," the agency said in its warning.

"However, over the years, numerous companies have marketed tests that claim to screen for and detect ovarian cancer," the FDA added.

But these tests may lead to delays in effective preventive treatments for high-risk women who have no symptoms, or result in unnecessary medical tests and/or surgery for those who do not have the disease, the agency noted.

According to the American Cancer Society, the most common screening test is called the CA-125 blood test. In many women with ovarian cancer, levels of this protein are high. But the problem with using it is that common conditions other than cancer can also cause high levels of CA-125, the cancer society says.

That's why women should not rely on ovarian cancer screening tests to make health or treatment decisions, the FDA said in its warning.

This is especially important for women who have a family history of ovarian cancer or the BRCA1 or BRCA2 genetic mutations, which raise the risk of both breast and ovarian cancer, the agency added.

Doctors should not recommend or use ovarian cancer screening tests in the general population, and they need to understand they are not a substitute for preventive measures that may reduce the chances of disease in high-risk patients, the FDA said.

The American College of Obstetricians and Gynecologists (ACOG) said that it supports the FDA warning. http://tinyurl.com/hrwcjwg

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