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.

.

Request to connect

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.

Request to Connect

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.

.

.

Request to connect

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.

Request to connect

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!

Request to connect

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.

.

.

Request to connect

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!

Request to connect

Sainte-Marthe-sur-le-lac, QC

En 2013, suite à l’apparition d’une petite bosse au niveau du cou, j’ai subi une échographie qui a démontré qu’il s’agissait d’un ganglion. Après la chirurgie, le verdict est tombé : Mélanome métastasique de source inconnue. Deux mois plus tard, j’ai subi une dissection de l’aisselle gauche avec retrait de 43 ganglions dont 7 malins. Les examens de suivi n’ont démontré aucune autre trace de cancer, mais le risque de récidive était très important.

J’ai donc été mis sous Ipilimumab par dose de 10mg. Quatre traitements étaient initialement prévus dans la première phase. Le premier n’a pas causé trop d’effet secondaire, mais lors du deuxième (début 2014) j’ai fait une hépatite du foie et subi deux hospitalisations. Les traitements ont du être arrêtés puis l’hépatite traitée. La médication m’a causé une pneumonie médicamenteuse, qui a nécessité une troisième hospitalisation. Depuis juillet 2014, j’ai arrêté tout traitement.

À titre préventif, j’ai des examens de suivi tous les 3 mois pour les 2 prochaines années. Les derniers examens ne démontrent aucun signe de récidive. J’ai dû cesser toute activité pour une période d’un an (travail, activités physique, etc.), activités qui ont repris graduellement en septembre 2014. Aujourd’hui, tout va bien et je profite, au jour le jour, de la vie qui s’offre à moi.

Entrez en contact

North Vancouver, B.C.

In 2003, a year after being told that a lump on my left arm was benign, I felt further discomfort and doctors decided the lump should be removed – after originally having a misdiagnosis, it turned out the lump was positive and I was diagnosed with Stage 4 malignant melanoma. In 2005, the cancer had propagated into my left lung, kidney, liver, and adrenal gland.

Having received the only available treatment option in B.C at the time, my prognosis was not good and I was given six months to live. With limited support from the medical community, my family researched options and we were able to find a trial treatment. After completion of the drug protocol, the tumors diminished. But, then in 2007 a 9 cm mass was found in my bowel.

After surgery, I was put on a new clinical trial. After completing the treatment, a PET scan showed a small tumor in my right kidney. Given my medical history, it was decided that the kidney be removed in January of 2009. Since 2009 I have been cancer free. Today, I am a little scarred…a little worn…but ALIVE and living an incredibly healthy, happy life.

.

.

Request to connect