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Devorah’s Story

Vancouver, B.C.

In November 2010, I was spending a day with my grandson; when I stood up to go to him, I noticed that my right leg and right arm felt abnormally weak, but these symptoms vanished quickly. The next day, my friend was driving us home from a movie, when my right leg cramped up, my right arm began to shake, and my vision briefly inverted.When I went to the hospital, they initially treated my case as a stroke; however, tests found a tumour in my brain and a tumour in my lung, so it was then assumed that I had lung cancer. I was booked in for brain surgery ten days later, after I returned from a familial obligation in St. Louis, USA. Two days into the trip I was unable to walk without support, and began to experience contractures. I flew home early, immediately admitting myself to the hospital. In the four days that passed before my surgery, my situation had degraded considerably. My tumour had burst, and I began to experience a hemorrhagic stroke; while I could still think clearly, I was unable to speak coherently. After the surgery, the pathology on my tumour came back as stage 4 melanoma. Another, smaller, tumour was discovered by my right ear, which would be treated with full-brain radiation. Between several complications and set-backs, recovery and the radiation, I was in the hospital for seven weeks. I regained my speech after two weeks, and was able to walk with the assistance of a walker in five weeks. I couldn’t climb up the stairs and I found the smell of food repulsive, so my husband and I lived in the basement suite of our house, and I drank smoothies, until I was able to tolerate food climb stairs, four months later.

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In March 2011, the second tumour that had not been removed was found to have grown. It was removed in March 2011 with no complications. Also in 2011, I met with Dr. Klimo, who offered me the trial treatment Ipilumimab. After a pet scan and some chemotherapy, I began the trial. The rest is history! My last treatment was in June 2011, and now I have check-ups every six months and a CT scan every year, and everything has come back clear to date.

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Bob’s Story

North Vancouver, B.C.

I discovered something on top of my head in the summer of 2012; I thought it was an insect bite. It got larger over the next few months, and then began to bleed. I saw a dermatologist who, after telling me it was nothing to worry about, later called to say it was a less common form of melanoma (nodular – amelanotic) and that it was quite advanced at stage 4.

The tumour on my scalp was deep, and two surgeries were needed to remove the primary tumor. A few months later, an MRI showed four fast growing tumours in my brain. I quickly received whole brain radiation, and not knowing what to do, my wife and I reached out to Kathy at Save Your Skin Foundation. On her advice, we got an oncologist and subsequently a referral to see Dr. Smylie in Edmonton. After a number of procedural bumps and roadblocks, in August 2013, we traveled to Winnipeg to received gamma knife radiosurgery on the four brain tumors.

For the next three years everything looked good. Regular scans showed no further growth of the four tumors, and yearly PET scans revealed no progression into any other areas of my body. But then, 3.5 years after my gamma knife radiosurgery, the brain tumors started looking larger again. To treat this, I went for a second round of gamma knife in Winnipeg, and a week after returning from Winnipeg I began a 2 year protocol of Keytruda immunotherapy with doses every 3 weeks.

Everything went well during the first year of the immunotherapy. I had no undesirable symptoms from the drug, and the regular MRI scans even showed some modest reduction in the size of the tumors. In March of 2018 though, a scan revealed that the largest tumor looked like it was starting to grow again.

We then decided it was time to take a closer look. It seemed that there could be multiple reasons why the MRI might show what looked like further progression, and because this particular tumor was deemed to be easily accessible by surgery, it was decided to take it out.  In April 2018 the tumor was successfully removed, and its analysis showed that it was completely dead tissue. YAHOO!

I continued the Keytruda treatment until the completion of the 2 year protocol in March 2019. Since that time, we are continuing to monitor the remaining tumors and I am feeling very well and healthy. I was told by some that my initial prognosis was very poor, but we are now focused on the long-term life plan.

My advice: Be positive, be proactive, get educated, seek out knowledgeable advice, and never give up. There are wonderful things happening with melanoma immunotherapy and treatments, and much is now known and understood about this disease that lets doctors make informed and targeted treatment plans. I’m living proof of that!

 

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Roy’s Story

White Rock, B.C.

Growing up in South Africa, I paid little attention to my skin, often resulting in sunburns; I usually looked like a tomato! I didn’t consider the possible sun damage until 2012, when I developed a mole on my back that itched, but I couldn’t see it. As a physician myself, I never thought about getting sick, so I left the mole for a while. A month after I had discovered it, I spontaneously asked another surgeon to remove the mole for me. When the tests came back as stage 1B melanoma, it was a shock, but I knew I had to come to terms with it. I pushed for a quick surgery, and eleven days after my mole had been removed, I had a wide resection surgery on my back, and the lymph nodes in my left armpit removed. Now I’m in good health, and doing well- but I feel privileged to be alive. Now, I try to take advantage of every second. I’m in the game!

After my experience, I’ve made it a personal project to teach people how to engage with their treatment, and advocate for themselves. By learning how to navigate the healthcare system, you can get the care you deserve, like I did.

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Shannon’s Story

Abbotsford, B.C.

Since being diagnosed with melanoma in 2005, I have had ten melanoma related surgeries, three systemic treatments, four separate radiation treatments, countless scans, and numerous blood transfusions and iron infusions.

My initial lesion was on my upper right arm, and considered lower risk as it was “only” 0.72mm deep. In 2010 the disease reached stage 3, appearing in a lymph node in my right armpit. Although the PET scan following the removal of my lymph nodes was clear, the disease progressed to stage 4 in 2011, when I was 6 months pregnant. It was in my brain, my left lung and my liver.

In June 2011, I underwent emergency brain surgery to remove the two large tumours to increase the chances of survival for our unborn daughter and I. The surgery went well for both of us, and both tumours were successfully removed. On August 5th, 2011 Madeline Delaine was delivered via C-Section; ten days later, I began 2 weeks of full-brain radiation. Before starting my radiation treatments, a CT discovered additional tumours, one in the lung and two in the liver, which were treated in the Fall with 4 infusions of the trial drug Ipilumimab.

In September 2012, I had surgery to remove one tumour in my lung, and one in my chest wall. In March 2013, I had surgery to remove a tumour on my left flank and in December of the same year, I had a tumour removed from my right breast. In April 2014, I had bowel surgery to remove 4ft of my small bowel and started up treatment with Pembrolizumab, through Health Canada’s Expanded Access Program. Shortly after my 14th infusion of Pembro at the beginning of 2015, I had another bowel surgery to remove a small amount of disease that was still in my small bowel.

I had a 10th surgery in July 2018 to remove a tumour that was close to my kidney. I continued with my treatment with Pembroluzimab for another year and had my 83rd and final infusion on July 31st, 2019. As of today, approaching fall of 2022, I continue to be tumour free!

 

 

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Save Your Skin Foundation’s British Columbia Government Reception

Save Your Skin Foundation, along with the support of MLA Jane Thornthwaite, welcomed MLAs from the BC Legislative Assembly to a reception and presentation on various new melanoma treatments that have become available in Canada and explained how they are changing the landscape for melanoma patients and increasing survivorship.

With the recent emergence of new treatments, there is now a real hope of survivorship for melanoma patients. Previously, many melanoma patients could only expect a survival rate of 10%. With a variety of new treatments released in recent years, these figures are improving drastically. There is real hope for survivorship.

Save Your Skin Team

Save Your Skin Founder Kathleen Barnard welcomed the MLAs and explained how a collaborative effort is needed to ensure that patients are receiving timely access to the best available care. With these new treatments, and the knowledge that more are coming soon, patients, doctors, pharmaceutical companies and government decision makers all have an important part to play.

Dr. Vanessa Bernstein, leading dermatologist with the BC Cancer Agency, explained the nitty gritty of these new treatments and how they will soon become the standard of care.

Melanoma survivor and friend of Save Your Skin, Nigel Deacon, closed the reception with an inspiring word. Nigel is a Victoria resident and was diagnosed with terminal ocular melanoma, but thanks to a trial treatment of a new drug, he has been stable for more than two years. This new treatment is the same drug that saved the life of Save Your Skin Founder Kathleen Barnard.

Thanks to Supporters

Coming straight from the World Cancer Congress in Vienna, the Save Your Skin team received a helping hand from sponsor Harbour Air who flew us directly from downtown Vancouver to downtown Victoria in order to be on site, on time.

The Save Your Skin team was warmly greeted in sunny Victoria by MLA Jane Thornthwaite and treated to a tour of the BC Legislature and a chance to attend the House Question Period.

Victoria Conference Centre was instrumental in putting together this important reception & presentation.

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Immunotherapy Fights Deadly Cancer- Meloney and Kathy Share Their Stories

IMMUNOTHERAPY FIGHTS DEADLY CANCER

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Immunotherapy is the latest advance in the way cancer is treated, using the body’s own immune system to fight otherwise deadly disease. Meloney Edghill knows it can work.

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Meloney also knows what the mother of a young child thinks about when told she has terminal cancer. She chokes back tears remembering: “I was worried it would kill me before my 4-year-old son would have any memories of me. I didn’t want him growing up and not remembering me at all.”

That was in April 2006. The fact that Meloney is still here to tell her story – and watch her son grow to a teenager – is thanks to the development of the newest form of cancer treatment, immunotherapy. Unlike the traditional approaches to cancer treatment – surgery, radiation, chemotherapy and targeted therapy – immunotherapies are drugs that release the natural brakes on the body’s own immune system so it can fight and kill the cancer cells.

In April 2006, the young mother was living in Edmonton and had a lump growing on the front of her shoulder. When she went to the doctor to check it out, it was too late.  She was diagnosed with metastatic melanoma, the most serious form of skin cancer.  It accounts for just 8 per cent of skin cancer cases, but is responsible for 70 per cent of deaths from the disease.

When she was first told she had melanoma, Meloney didn’t realize the implications. “I initially thought they would just cut it out and everything would sort of be OK after that,” she recalls. “We found out very fast that it was not that simple and in fact there were very few options.  We were devastated.”

At the time, the average life expectancy for someone with Meloney’s diagnosis was about six to nine months. That October, she enrolled in a trial of a new melanoma immunotherapy that was in an early study.

In January 2007, when tested to see how she had responded, Meloney was taken by surprise. “All of my cancer was just about gone after that,” she says. “It was unbelievable to my doctors and nurses that something had worked that well and that quickly.” According to her doctor, today Meloney is cancer free and her son, who is a now a teenager, has grown up with his mother at his side.

Meloney’s experience with the treatment is not shared by all melanoma patients, but the immunotherapy she took has shown good results in studies. It has been approved for use in Canada and other countries and is the first-ever treatment shown in clinical studies to improve survival of patients with metastatic melanoma.  Ongoing research continues to give new hope to those diagnosed with the disease.

Today there are even newer immunotherapies available.  The latest ones work in different ways to stimulate the immune system, shutting off a different one of the “checkpoint inhibitors” which act as natural brakes on the immune system and prevent it acting against cancer cells. These newer immunotherapies are also being studied with promising results in combination with the older drugs in melanoma and as potential treatments for a wide variety of other cancers and are showing promising results.

“Immunotherapy has completely transformed the way advanced melanoma is treated.  Just a few years ago patients who were diagnosed were desperate and many were told to ‘get their affairs in order’. In just a short period this cancer went from being defined as a deadly disease to a cancer that patients may be able to survive,” says Kathy Barnard, Founder and President of the Save Your Skin Foundation, a melanoma patient support organization that also aims to educate the public on the importance of protecting the skin from the sun’s harmful ultraviolet rays, a major risk factor for skin cancer.

“What’s even more exciting is that there is ongoing research with immunotherapy which means more treatments are available to patients to give them options.  Can you imagine?  Advanced melanoma patients have treatment options to survive?  I never dreamed this would happen in my lifetime. I’m here today witnessing history being made.  In fact, I’m living proof of it,” Kathy adds. She herself is a melanoma survivor, another beneficiary of the same treatment that helped Meloney.  Kathy has since devoted herself to helping others and educating about the disease.

For more information please visit imlivingproof.ca

Copyright 2015 ZoomerMedia Limited

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