BIO

In 2006 I was diagnosed with stage 2 melanoma at age 29 and in 2018 with stage 4. I was always a candidate for melanoma (strawberry blond, blue eyed, sun burns as a child, more than 50 moles) and was receiving yearly dermatologist checks.

In 2006 a small pink bump started growing on my head. At my annual checkup while 8 months pregnant my dermatologist said it looked fine. I told him it bothered me and asked him to take it off. It turned out to be stage 2 melanoma. I had a 1cm margin removed. After my daughter was born I went in for surgery and had another 1cm margin removed and 7 lymph nodes. The margins and lymph nodes were clear. There was no further treatment required.

At the beginning of 2018 I just wasn’t feeling well. I would go to bed for a two hour nap after work and was nauseous when I ate. I also had rib pain that I finally went to the doctor about. He told me I had arthritic ribs and my tiredness was seasonal depression. I asked for blood tests and they came back as something was wrong with my kidneys. I was sent for three more blood tests to confirm that yes, something was up and referred for an ultrasound in April. After the ultrasound I was sent immediately to emergency to get a CT scan. The ER doctor told me that I had stage 4 cancer and to go home and get my affairs in order. I had over 14 brain tumours, the largest being 2.2cm, and too many tumours underneath my skin to count, some the size of golf balls. I had bone cancer in my legs, hips, pelvis, spine and ribs. There was a 10cm tumour on my right ovary, a 5cm one on my left kidney, a 2cm one in the middle of my right lung and small ones on my liver. After a biopsy I learned that it was melanoma but they never found a primary mole.

It didn’t look good, but I believed from the start that I would be cancer free. I had whole brain radiation for a week and then started 4 rounds of immunotherapy (ipilimumab and nivolumab). I had nausea, vomiting, slight rash and extreme fatigue but made it through. I then continued with Nivolumab every two weeks and the only side effect was fatigue. I also had MRI and PET scans every three months. I ended up having a lingering tumour above my right ear and got another week of brain radiation. It has not grown in a year so I believe it is now scar tissue. I had tumours in both femurs that were not responding to immunotherapy and had radiation on those spots.

I also had a new spot grow on my right foot during this time that my dermatologist said was not melanoma and wouldn’t take off. On my next visit I said I think it is something as it is new and he removed the spot. It was basal cell carcinoma. You must be your own advocate!

Spring of 2020 my scans showed no active cancer. Fall of 2020 I had completed 56 rounds of Nivolumab and started getting mouth sores. I am taking a break from treatment and will continue scans every six months for another three years. The last few years have been a blur but I am so grateful to be alive thank you to modern medicine and our excellent health care system. Don’t give up hope.

Marcel’s journey is shared with us by his wife.

           Marcel’s journey with melanoma started in 2010 when we noticed that a pink, normal looking, healthy mole that he had all of his life had turned black. This mole was located on the left side of his temple. He went to his family doctor and his family doctor referred him to a Dermatologist. The Dermatologist told Marcel that he thought Marcel had hit his mole on safety glasses, and that it was filled with blood. He also told Marcel that a 31-year-old from Northern British Columbia wouldn’t have skin cancer. The Dermatologist performed a shave biopsy, but unfortunately it wasn’t enough to detect the melanoma and the results came back normal. We later found out that the Dermatologist should have excited the whole mole for an accurate pathology, when we sought out the opinion of a Plastic Surgeon in 2011. Finding the Plastic Surgeon is a personal story in itself, and we are very grateful that our stars aligned that day. The Plastic Surgeon was concerned with the mole and suggested that it be removed. The mole was finally excised accurately and a diagnosis of melanoma was confirmed. Following the melanoma guidelines, the Plastic Surgeon performed a five-hour surgery to completely remove the surrounding tissue and lymph nodes. Marcel was considered lucky, as the lymph nodes came back clear and the melanoma had not spread to any other areas of his body. Marcel’s melanoma was only 1mm in size.

Marcel’s chance of melanoma recurring in his lifetime was said to be less than 5%, and he was followed by the BC Cancer Agency for five years.In 2019, Marcel developed symptoms Bells Palsy on the left side of his face, which was later confirmed to be a misdiagnosis. Marcel had a brain tumour that was growing in the fourth ventricle of his brain and his brain stem. Marcel underwent a high-risk surgery to remove the tumour which involved removing a piece of his skull and entering through the brain stem, which controls the central nervous system; therefore he was at risk of death, paralysis, or permanently needing a feeding or breathing tube. Marcel came out of the surgery with double-vision. The pathology of Marcel’s tumour came back as metastatic melanoma, and the melanoma had spread to his lungs and spleen. There are no words to describe the fear and anxiety of a stage 4 metastatic melanoma diagnosis. The Oncologist’s dictation report said: although there have been tremendous improvements in outcomes for CNS metastases from melanoma, it is still an incurable situation with medium overall survival of approximately eleven months, and the two-year survival rate is around 30%.

Marcel is currently six months post-surgery and melanoma diagnosis. The left side of his face is still completely paralyzed, his left eye no longer works, and balance is often unsteady. Marcel is a true warrior: he returned to work within three months of surgery, he was able to ski a couple of times this season with his kids, andhis recent scans are showing excellent response to immunotherapy treatments. It has not been an easy road for Marcel: he has had many side effects from his treatment, and recently had to have a change in treatment due to a life-threatening complication. Marcel will be the exception, though, and he will continue to thrive and live his best life. He will see our beautiful children grow up, get married, and have their own children one day. Please take skin cancer seriously— please be sun safe, please check your skin monthly. Love the skin you are in, as all it takes is one bad ray on one bad day.

We want to thank our amazing family, friends, and colleagues for their ongoing support and love. We want to extend our thanks to the amazing Kathy Barnard, Founder of the Save Your Skin Foundation. Without her compassionate support, superior knowledge, and ongoing love for us, we wouldn’t be here today sharing Marcel’s story. Kathy, her beautiful Foundation, and the people we have met along the way, give us hope. Thank you! I personally want to thank my husband Marcel for being so open with his story in order to raise awareness of melanoma. You are my hero Marcel, always and forever.

Early Signs

My story began sometime during the summer of 2017.  I had been experiencing lower back pain for a few months that nothing seem to relieve, but could, like anyone in their mid-forties, be attributed to any number of things.  Then, one Friday evening late that November, I felt an intense pain on my left side, just behind my lower ribs that dropped me to the floor.  The intense pain lasted only a few minutes, but things never felt normal after that.  I went to my GP the following Monday after being sent home from the ER that weekend with an all clear. He immediately sent me for bloodwork and an ultrasound of my gallbladder, suspecting I may have stones. 

Detection

I knew something wasn’t right when the ultrasound technician asked me to roll onto my side so she could take a look at my kidneys.  She took an awful lot of pictures, and typed way too many notes for it to be a simple case of gallstones.  I was at my GP’s office at 7:30 the next morning to get the results, and the ultrasound showed 3 liver lesions and large masses on both adrenal glands.

The Diagnosis

The week before Christmas 2017, I had a biopsy done of the largest liver lesion, that to everyone’s surprise, confirmed melanoma.  I was terrified because all I knew about the disease was that it was deadly and I knew nothing about the new lifesaving immunotherapies.  Additional CT and MRI scans confirmed that the disease was very advanced and the tumor burden was intense, with many of them doubling in size since the initial ultrasound.  At one point, an oncologist said that it would be easier to list the areas not effected then to list what was.

The ER

The lower back pain began to intensify, but I had very little idea of what was going on.  My overall health was deteriorating quickly and I had started to plan for the worst.  On January 20, 2018, I had gone to bed in such pain that I could not sleep.  Just after 1:00 AM, I asked my fiancée to take me to the ER due to the intensity of the pain.  I remember walking into the ER and sitting at the triage desk when a nurse, named Grace, took one look at me and said “we need to get him to the back now”.  Next thing I remember, I am waking up on a gurney with 5 nurses trying to get my clothes off, checking my vitals and trying to start an IV. It wasn’t until I saw the saw the fear and sadness in my fiancée’s eyes that I put the situation into perspective.  It was at that point that I realized I was partially paralyzed from the waist down.  The paralysis was caused by tumor growth on my hips and pelvis that impeded both sciatic nerves simultaneously. 

Things were so bad at this point, the ER doctors admitted my fiancée and put her in a bed beside me, thinking my journey was coming to an end.  They put me on steroids to reduce the inflammation, and within days I was receiving radiation treatment to my hips and pelvis to try to alleviate the pressure on my nerves.  Amazingly I was up and walking in just days, but it took a month for the full feeling to come back to my legs and groin.

The Staph Infection

Well, you guessed it, I supposedly contracted a staph infection during the week I was in the ER fighting to save my legs.  This was discovered by a blood test, but the location of the infection was never confirmed by either a transesophageal echocardiogram or a full body MRI.  But there was no taking chances, and high dose IV antibiotics started immediately.

The Game Changer

My best guess is that just weeks before the melanoma took my life, I received my 1^st combination does of the lifesaving immunotherapy Opdivo (nivolumab) + Yervoy (ipilimumab).  I would be the 1^st person that my oncologist knew of who would be treated for a staph infection and be given Opdivo (nivolumab) + Yervoy (ipilimumab) simultaneously.  The 1^st couple weeks were a struggle and I felt like I was literally fighting for my life.  My body could not regulate its own temperature, which fluctuated between 36.2°C and 38.8°C, and the cancer was eating a hole through my sternum which hurt so much I couldn’t sit up without being in excruciating pain.  I was covered from head to toe with the itchiest rash I have ever experienced.  I was very thankful to have my brother and father by my side to wake me up every 4 hours to take pain meds and Tylenol, cool me down with cold compresses when I was too hot, and yes, to empty my home made urinal because there was no way I was making it to the bathroom.

The Recovery

The cancer was pretty much stopped in its tracks and the side effects became more manageable over the next few months. By June, the experience took its toll on my poor fiancée and she vanished permanently to be with her dad who was also dying of prostate cancer at the same time.  I struggled physically and emotionally,  trying to define my new normal.  I changed my diet, started juicing, slowly reintroduced physical exercise, went to several types of therapy, read spiritual and self-help books, and started yoga and meditation.  By December 2018, I was able to lace up my running shoes again. 

The results of my latest PET/CT scan conducted February 2019 shows a favorable partial metabolic response with many lesions largely resolved, and the few remaining are shrinking and show only mild uptake compared to previous scans.