After 20 years since my last diagnosis, it came as a surprise to hear the surgeon say, “I’m going to be blunt. Your biopsy is positive for melanoma.” Thus began a two-year story of fear, learning, and coming to terms with mortality.
Twenty years ago my wife and I had just brought two wonderful boys into the world, bought our first home, and were settling into a new life when I noticed a funny looking mole on my right calf. My mother who was a nurse always told me to check my moles and to see a doctor if any of them looked strange. My doctor at the time thought it was probably a blood blister and so did nothing about it.
Six months later I just finished having a shower when our oldest son toddled into the bathroom, took a look at the mole on my calf and kissed it. No kidding. I thought I’d better get it checked out. This time I told the doctor to take it off and have it biopsied and guess what? Malignant melanoma.
So began my first go round with fear and the horrible realization that I had cancer. I was 32. The surgery to remove a wider margin around the mole showed there was no sign the malignancy had spread in my tissue beyond the excision lines.
The next jolt came when we tried to get more life insurance. The agent we met with was pleased to see us until the end of the initial interview when we came to the medical information. When he heard I’d had melanoma a few years before he pretty much packed his bags and left the house. It was rude and unfeeling. In addition, it told us the insurance industry knew something we didn’t. The story may not be over.
When five years passed after the initial mole we found an insurer. We got on with our lives, working on retirement savings, and more importantly, raising our young family. We went merrily forward with me getting regular examinations of my skin by a dermatologist and having several suspicious moles removed. None were positive, much to our relief.
Fast forward to 2008 when I noticed a swelling in a lymph node. I had it checked out first by a dermatologist and then a biopsy came back negative. It turned out later there were suspicious cells in the sample. The swelling in the node went down and I thought my health was okay.
In late summer 2009 the node swelled again and this time it was biopsied by a surgeon who confirmed my suspicions – it was malignant.
How could this be after 20 years? I’d been careful with the sun, but I guess too many years as a kid on a hay wagon on the farm and swimming without sun protection had already done its work. Some of the melanoma had gotten away from that initial site waiting for some unknown conditions to give it another chance to grow.
Thus began my second round with melanoma. This time it was a more serious business with different treatments in rapid succession as we chased the melanoma around my body. The doctor who performed the biopsy that positively identified the cancer removed lymph nodes from my right groin. Another oncologist at the Cross Cancer Institute explained that our treatment options included clinical trials with new cancer fighting drugs. We learned that Dacarbazine, the only approved drug for melanoma, had a very poor success record, in the low single digit percentages. He referred to it as a “toxic placebo.”
In the first of two clinical trials in which I eventually participated our hopes were raised by a drug that made sense to us – ipilimumab. “Ipi,” as we came to call it, is a fully human, monoclonal antibody that prompts the body’s own immune system to kill melanoma cells. The trial treatment ran for several months in late 2009 and early 2010 with the goal of preventing recurrence. But it turned out I’d been randomized to the placebo saline rather than ipilimumab. So it goes.
With nothing but my own immune system to fight the cancer, and having returned to work part-time, the melanoma appeared once again in my groin. I had to have a second surgery in the summer. The doctor recommended radiation that started in the fall of 2010 to stop local spread in the groin area after surgery. Things looked okay that fall until a CT scan showed tumours in my lungs; I could also feel two lymph nodes in my neck and armpit.
My very resourceful oncologist had another trial we had by now heard about from researching options on the US National Cancer Institute’s clinical trials database. He reviewed the various options and I agreed to go into a clinical trial with a BRAF inhibitor drug. The drug was randomized with Dacarbazine as the control arm. At the time, Dacarbazine was the only drug approved for use for melanoma sufferers. I started treatment under this trial in late fall 2010. Once again I got the control arm and by January I was removed from the trial and had to look at other options since the cancer was progressing in my lungs.
Shortly after, my doctor informed us that ipilimumab had been approved under a Compassionate Use protocol. This was fabulous news because by now we’d heard great things about “ipi”, had talked with someone who’d had a great response to it, and learned a lot more about its positive track record from clinical trial results. The US Food and Drug Administration (FDA) was said to be moving toward approval of ipilimumab as a melanoma treatment, and finally approved it as a first-line treatment on March 26th.
I started a four-dose treatment with “ipi” in early 2011. By March I had lost weight as the melanoma was progressing. The tumours in my lungs had grown and I had developed a cough and occasional difficulty breathing. The lumps in my neck and armpit were bigger, and my spirits were dropping.
After a couple of doses of ipilimumab, my symptoms started to abate. I could breathe better and by April, CT results showed a 70% shrinkage in the size of my lung tumours. A subsequent scan showed continued progress against the disease. My weight started to return to normal, and our hopes rose.
In the course of all these events I went through all sorts of feelings. Often I didn’t know exactly what I was feeling and why I was doing certain things. The first experience for both my wife and me was shock and denial. I tried to cling to my old life and returned to work as quickly as possible after surgery. I missed work, even though it was quite stressful. I was happy to get back into the fray but it was clear that my workplace had moved on even after only two months.
When it finally sank in that I was in a battle for my life I realized there were all kinds of other things I needed to do, primarily to put my health and family first, to make preparations for my possible death while I had a chance to do that myself, and to do things I wanted to do that I’d been leaving behind or not getting to.
What helped me through? The Cross Cancer Institute came more and more to feel like home, with a wonderful and caring staff and volunteers with their cookie and coffee carts. My oncologist’s calm and rational approach plus his clear expertise in dealing with melanoma gave us confidence.
I also started looking at what other things I could do with my life that would help battle my melanoma. I changed my diet based on books, friends’ suggestions and Internet information on foods that help your body fight cancer. We looked at radical alternative dietary medicine but the lack of scientific corroboration and lack of common sense put us off these.
I tried to keep physically active and practiced Qi Gong breathing exercises to focus on healing and the task at hand. I have been taking acupuncture treatments monthly since I started treatment at the Cross. The acupuncturist told me early on that my immune system kept the melanoma at bay for 20 years. The job now was to “wake up my immune system and get it back to work.” To keep my mind active on other things I did a couple of DVD courses from The Great Courses.
I took advantage of the Cross Cancer Institute’s Psycho/Spiritual counselors to discuss the facts and feelings of my journey through treatment, and to participate in educational workshops. My spiritual journey has taken some twists and turns over the years. During treatment I found the philosophy of Jiddu Krishnamurti and the insights of Buddhism very helpful in focusing on the present rather than dwelling on the past and worrying about the future.
Viktor Frankl’s book Man’s Search for Meaning was helpful. He tells the story of his experience as a Nazi prison camp survivor. Frankl said that, unlike a prison sentence, being in a prison camp you don’t know what your sentence is, you don’t know why you went there, and you have no idea when or if you will get out of it. That described my experience with cancer. Other ideas in his book on how he dealt with the camps helped me deal with my cancer.
My cousin, whose wife died of colon cancer in 2009, was a great help to us sorting through the language of cancer treatment and the plethora of clinical trial information. It was great to have his knowledge of the experience of cancer to draw upon plus his moral support. A good friend was a strong support as well through regular weekend breakfasts at Tim Horton’s.
All in all, a feeling of gratitude has grown in me over the last two years – for my wife’s constant love, care and wisdom, the support of my extended family, the value of my company’s benefits program, the work of countless scientists and funding organizations, the provincial and federal governments’ work over decades to build a medical system that looks after me and my family – so many things.
At my most recent appointment with my oncologist, he informed us that the median survival period for melanoma patients treated with ipilimumab (now officially an approved melanoma treatment called Yervoy) is 18 months. Without treatment, Stage IV melanoma patients like me have a life expectancy of about 7 months. About 20% of patients treated with ipilimumab have a “durable” response, some patients are still alive four to six years after treatment with ipilimumab. We’re all hoping I’m part of that 20% group. I feel well, positive, and am enjoying life with a grateful heart.
