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!
