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Dora’s Story


Cando, Saskatchewan

I was born with a black mole on my right heel that started to change and was diagnosed as cancerous, so I had surgery in 2002 to have it removed. In 2008 it came back and was removed again. Then in 2013 it came back in my lymph nodes; I had 14 removed, but in 2016 it came back with tumours inside and outside.

On Jan 14th, 2016 a CT scan showed that my cancer had returned in my groin area, and potentially in my lung and kidneys.

The Doctor told me that there was nothing they could do for me, and I likely I didn’t have much time left. Then Dr. Abbas approached me, to see if I was interested in trying this new drug. I accepted, and I turned out to be a candidate for NIVOLUMAB-100. I was happy, as maybe there would be hope for a few more years; however, the program was 1-2 years long, and have to drive 2 1/2 hours to Saskatoon every two weeks.

My original CT scan showed a lymph tumour that was 4.7CM by 4.3cm; my last CT scan showed the tumour at 9mmx7mm. All my other tumours have gone, including the eighteen tumours on the outside of my stomach, which began to disappear in the first two weeks of my treatment. The spots on my lung, my bones, and my kidneys are all gone, and my blood work has always been good.

I have had no side effects except some fatigue and weight loss, I have never been sick nor did I lose any hair- though my hair has darkened and curled for the first time in my life.

Dr Abbas’ nurse Megan has been a lifeline for me. She is open to questions, finds the answers, and is just an awesome person. She makes you feel important, and Dr. Abbas has been very good to me in answering questions and giving me advice.

This drug is definitely a Godsend, as I am here to tell you about it.

I hope to have quite a few more years to live and enjoy my life, my family, and my friends. I want to say a heartfelt thank you to everyone involved in my health care, and especially this wonder drug called NIVOLUMAB-100.

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Lana’s Story


Prince Albert, Saskatchewan

In the Summer of 2013, I nicked a mole on my right calf while shaving; It bled a bit, but I didn’t think anything of it. I have always been covered head to toe in freckles and moles, and I had suntanned when I was younger, so I agreed to get a skin examination. The Doctor I went to decided it would be best to apply liquid nitrogen and burn the mole off. This procedure resulted in a keloid, which would eventually be diagnosed as melanoma in January, 2014. Two weeks later, the mole and surrounding lymph nodes were removed, revealing that the cancer had spread to my lymph nodes. I began taking interferon and radiation treatments. Aside from some side effects, I responded positively to the interferon; however, the radiation prevented my surgery wound from healing. After three extremely painful debridements, a vacuum was placed over my wound for ten months to help it heal.

After my interferon treatments ended my wound healed quickly, and I was optimistic. However, my six month checkup revealed that the melanoma had returned and metastasized to my lungs. I began receiving the drug Nivolumab, which I was scheduled to take for two years. In the following months, more tests would reveal that the cancer had metastasized to my breasts, skin, and my brain. I had begun taking the combination trial of Ipilimumab and Nivolumab in four cycles every three weeks, which demonstrated positive effects on my lung and brain lesions. Since October 19th, 2016, I have been on maintenance treatment of Nivolumab every two weeks, and my most recent CT scan in April showed a complete response!

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Erica’s Story


 Millville, PA

At age 25, my life turned around quickly. I had recently had a baby in March 2016, and everything was going great and I was adjusting to my new lifestyle. I also accepted a new job in the medical field, which included scheduling appointments. I kept scheduling appointments for people to get skin checks and I thought that I should schedule one for myself, as I had an occurrence of basal cell carcinoma when I was sixteen. So, I scheduled a skin exam for myself, and had four moles removed. 

Then, on October 18 (my birthday), I got a phone call stating that one mole had come back very atypical and had tested positively for melanoma. They did not know how serious it was at the time, how long I had been walking around with it—  nothing. I was terrified. I was 25. I just had a baby. So many thoughts were going through my mind! A few weeks later I met with my Surgical Oncologist.  We talked about everything and set up my surgery. On November 16, I went in for surgery and a lymph node biopsy. I had two lymph nodes and all surrounding skin removed. I was diagnosed with T1 B melanoma of the abdominal wall. Two weeks later, I got the news that it had not spread to any other lymph nodes or body parts. I now attend melanoma clinic appointments every six months and practice sun safety. This was a scary experience that has resulted in a lifetime of appointments. I want to help anyone I can who is struggling with this disease, and get the word out there that skin cancer is preventable!

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Genevieve’s Story


Montreal, QC

I am 52 years old and I have had a lot of luck; having not met the right people at the right time, I would not be alive to tell you my story.

I am proud to say that I have survived two recurrences of malignant melanoma since my initial diagnosis at forty seven years old.

On December 22, 2011, the doctor called me at work. I had just been promoted to the position of director. The results of a beauty spot that had been removed from my leg came back as T1a melanoma. The doctor planned to make an extended incision for 1 cm and check the sentinel ganglion.

The pathology report came back negative for extended tissue and the sentinel ganglion; I felt very lucky. According to the surgeon, only 20% of T1a melanomas reoccur, so I was not concerned at all. I felt like this episode was an alert, a message to slow down and enjoy life. The kids were old enough now, and I was ready to make a few changes. I took three weeks off work to recover from surgery.

On the fifth day of our cruise to the Bahamas in October 2014, I felt a big nodule in my groin area of the same leg. I knew immediately what was happening.

The surgeon removed seventeen ganglions. Two of them were positive for melanoma, but one was over 3 cm and was extending over the capsula. I received one year of Interferon treatment, over one hundred and twenty extremely painful injections. I took nine months off work and worked under Interferon to be able to pay the bills and the extra for this expensive treatment.

In November 2015, we were very close to the end of Interferon treatment. A PET scan showed multiple lung metastasis. My life expectancy was less than a year. However, I had the chance of being approved to be a part of a trial for a new chemo available in Quebec from September 2015 onwards.

Currently, I have been receiving chemotherapy every second week since December 8, 2015, and will receive it for life with the help of Bristol-Myers. I have a miraculous happy ending: my scan from July 2016 shows a regression of all the lung metastasis.

Chemotherapy is demanding, the sides effects are painful, but I am alive! I am still unable to work but I am thinking of going back one day per week in the near future! I am living proof that, with the help of the latest treatments (Nivolumab/Opdivo in my case), living with Stage 4 melanoma is now possible.

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Chris B’ Story


Kamloops, B.C.

In 2009, I had a mole removed from my back with a wide excision surgery. Though the mole was cancerous, it had been removed completely, so I stopped thinking about it.

I was out hiking in May 2015, when I began to feel surprisingly short of breath. I went in for an x-ray, and the doctor told me to go to the hospital immediately; my right lung had almost collapsed. The melanoma had moved into the pleura lining of my lung, causing fluid leakage. I spent ten days in the hospital, with a chest catheter draining my lung fluids regularly.

I then had a bronchial tube biopsy, the results of which came back as stage 4 metastatic melanoma. CT scans founds more tumours on my kidney, spine, and neck. I travelled to Kelowna to begin receiving the checkpoint inhibitor combination of Tafinlar and Mekinist. By September, I had begun to feel better; however, my body became immune to the drugs I was receiving, and my cancer came back.

I began seeing a Naturopath, who suggested I look into the immunotherapy combination of Nivolumab and Ipilimumab. When my cancer returned, I was admitted to the hospital in Kamloops, waiting for my Oncologist to decide between the immunotherapy Keytruda, or finding a clinical trial for Nivolumab and Ipilimumab. He found a trial in Edmonton, where I went, despite being very ill. During the first round of treatment, I was constantly dehydrated, despite draining three litres of fluid a day from my body. After the second round, I began to feel better. I spent six and a half weeks in the Cross Cancer Institute, taking pain relief medications and having fluid drained regularly from my lungs. After my fourth cycle of treatment, I was discharged from the hospital. While I still have nine treatments to go of Nivolumab, which I receive every second week, I am on track for a full immune response.

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Danika’s Story

Montréal, QC

I was 19 years old when I had my first contact with melanoma. I had a beauty mark on my back and it began to grow bigger and had a reddish hue.

A dermatologist did a biopsy and I had the diagnosis on December 28 2011; I was 19 and I had a malignant melanoma, the most serious form of skin cancer. I had a PET scan and a lymphoscintigraphy. Fortunately, at that time, I had no metastases. I had an operation to remove the beauty mark and the skin below and I was told that everything was fine. I only kept a scar shaped like a bird as a souvenir.

However, two years later, I was stage four melanoma.
The previous weeks, some lumps grew on my abdomen, my chest, and even my face. So we did biopsies and it was subcutaneous metastases. A PET scan later, I learned that I also had metastases to the liver, lungs and bones. At that time, I knew it was serious, but I had no idea how my life was about to change.

I was quickly supported by my hospital, the CHUM Notre-Dame, who proposed me to be part of a research protocol. I started taking tablets of « LGX818 », it was so new that they did not even have an official name yet. They were anti-BRAF drugs, since I had the BRAF mutation. One of the worst side effects that I had was peripheral neuropathy. It felt like having electrical shocks in my body. Then came the first scans results ; the treatment was working since some metastases decreased volume and no new one had appeared. Muscle pain, nerve, joint, skin problems, all of it was now worth it.

However, a few weeks after starting treatment, a new side effect appeared. In medical parlance, it is called “alopecia”. More simply, it means hair loss. Of course when you think chemotherapy you think hair loss, but my treatment was not supposed to do that, so I wasn’t prepared. In a few weeks I had to witness the loss of at least 50% of my hair, and believe me, I had a lot of hair! I found some in my bed, in the shower, on the couch, carpet, everywhere … I couldn’t take it anymore so I asked my mother to shave all of it. I anticipated this moment and yet none of us has shed tears. To my surprise, I was not so bad without hair. I still decided to wear a wig to school, to avoid passing from one extreme to the other and catch the eye of everyone.

After nearly 8 months of treatments, I had an appointment with my oncologist and I felt that something was wrong. Indeed, the latest scan results showed new lesions. My body got used to the medication and became resistant to it. We had to change treatment. New drugs were just emerging in Canada and were offering promising results. However, we must pass through a conventional chemotherapy before gaining access to the other treatments. These new treatments cost a lot of money so you have to « try everything » before.

A week later, it was time for that chemotherapy called Dacarbazine. It was the first time I found myself in these kinds of rooms, you know the rooms where there are several chairs next to each other, and on which are literally plugged patients. And of course, most patients are older and the majority have no hair. The image gives a shock. However, once installed in my chair, I noticed that the atmosphere was not so bad.

The next days were very difficult. I had nausea, fatigue and flu-like symptoms. I was going to school when my condition would let me. My next dose was scheduled three weeks later but it never took place. Bumps had appeared on my body; Dacarbazine wasn’t working on me at all. At least, now I had access to the new treatment. Again, I had to change course.

The new treatment, Yervoy, was actually immunotherapy, which rely on our natural immune system to destroy cancer cells, that’s the essence of immunotherapy. A few days later, on May 14, the day before my birthday, I found myself once again in the treatment room, but this time with another liquid pouring into my veins.

The first shot was held pretty well and I could finish my session. In addition, hair began to appear on my skull. However, bad news came back; I started to feel horrible abdominal pain. I even felt my tumors growing back. On the abdomen, I had a big lump like a cherry, right under my skin. So I felt it constantly.

I went to the hospital and the on-call oncologist decided to do the scans and all the tests right then. She came back several hours later with the results … Just by the look on his face, his way of coming to me, I felt it was bad. He sat on my bed, took my hand and said: “The news are not good, tumors got bigger, especially the one on the liver and it’s probably what’s causing your pain. ”

So … we turned to a fourth type of treatment in one year. I was exhausted. This was the latest treatment available in Canada for melanoma. It was still immunotherapy, but called Pembrolizumab (Keytruda).

The first Keytruda treatment went well. A few days later, the pain seemed to lessen a bit. I got to do some activities, saw some friends, etc. A few weeks later, the scan results finally brought some good news; after only 3 shots, metastases were reduced by approximately 50%! And I had almost no side effects; only fatigue the days following treatment, as well as vitiligo that appeared on my body.

So here I am, May 2016, I just turned 24 years two days ago, and my current treatment, pembrolizumab, is finally working. I had 13 shots so far and I will continue for at least another year. I hope that future scans will be even better than the last ones. I got back to school, my hair grew back and I can finally start to enjoy life again!

Those last two years were a roller coaster of emotions. We all have the right, at times, to be afraid and desperate. The important thing is to get up and always keep in the back of our mind the hope to believe that everything will be fine.

 

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Natalie’s Story

Meaford, ON

In the spring of 2014, at 37 years old, I was diagnosed with Stage IIIB nodular melanoma. Over the course of six to eight months, a lifelong mole on my hip had grown, changed in colour, and become itchy. Being a busy working mother of eleven year-old twins, I neglected to have this mole looked at until my daughter insisted I show our doctor while in her office for a sore throat.

Two days later an excisional biopsy was performed and the pathology revealed a melanoma with Breslow depth of 12.5 mm, Clark level 5, and a relatively high rate of three mitoses per millimeter squared. The peripheral margins were quite close at 0.2 mm, however the deep margin was 6 mm. One week after finding melanoma in the mole, I had a sentinal node biopsy, revealing a further diagnosis of metastases. I still struggle to understand these terms, but I do know they have altered my life forever.

Within a month I had a right hip wide local excision to 2 cm margins, and a superficial and deep right groin lymphadenectomy, going home to be on strict bedrest for eight weeks. I had four of thirteen lymph nodes positive, therefore I received further treatment post-surgery, in the form of immunotherapy. I participated in a clinical trial at Sunnybrook in Toronto, receiving eight doses of ipilimumab over sixty-eight weeks; four treatments three weeks apart, and then four more treatments, each being three months apart, with the last one in September 2015.

I still have CT scans every six months to maintain surveillance on my melanoma. Although I am considered at high risk for recurrence, to date I am still clear and I am grateful to report that my life has resumed with hope and ambition. I am happy to share my story as it may help someone else feel less desperation in such a scary situation. Living with melanoma is not easy, but we are not alone.

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Christian’s Story

Vancouver, B.C.

When I was entering the navy in 2002, a barber pointed out a mole that I had never noticed on the top of my head. The same mole made itself known twelve years later, when it began to bleed on a sailing trip. I then saw a Doctor and a Dermatologist, who agreed that it was stage 1B melanoma. I had two surgeries to remove the mole, the second one leaving me with a row of staples along the top of my head. I wore a lot of hats, and even cut back on smiling, because the pressure would stretch the incision!

I spend a lot of time outdoors, and I had always been pretty proactive about wearing sunscreen. But anytime you do forget to wear sunscreen, or forget to wear a hat, you’re at risk for burning and damaging your skin; seeing as my mole was on the top of my head, not wearing hats all the time likely contributed to my melanoma. Before my diagnosis, I had gotten my moles checked out semi-regularly, but moles change – we have to keep up with them.

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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.
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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