My relationship with melanoma goes back about 30 years. My father passed away at the age of 71 from a primary mole on his back. I was 29 at the time and, as a result, very diligently went to the dermatologist every six months. So it was a bit of a surprise when in June of 2000, my wife discovered a mole on my back.
A biopsy indicated it was indeed melanoma. It was only 1.1 mm deep, so our confidence was high that it won’t have any long term impact. I had an aggressive wide local excision to get rid of it and get clear margins. My follow up derm check-ups gave me a clean bill of health.
In March of 2005, after developing some unusual symptoms, I had a CAT scan that revealed metastatic melanoma. I had tumors in my liver, lungs and lymph nodes that, according to the radiologist reports were “too numerous to count.” Given the progression of my disease I had somewhere in the neighborhood of six months to live. Although I started putting my affairs in order, I was determined to do whatever I could to beat this thing. After eight hours of research online, I felt I had a basic understanding of what the disease was about, what the treatment options were, what statistical outcomes were published, where the major centers were located and which doctors seemed to be the leading practitioners in melanoma.
The key for me was to identify the treatment sequence I would follow if the previous treatment failed. In my opinion, doctors seem to specialize in or favor specific treatment options. To me, choosing my doctor first meant limiting the number of treatment options I could access. So I decided instead to research the treatment sequence I wanted to pursue and then find the best doctors I could to implement them.
I decided to be treated with high dose IL-2, an immunotherapy with notorious side effects, based on my belief that if I did respond to the treatment, it held out the best hope for a durable response. If I didn’t respond, at least my own immune system was intact. And since the side effects are almost always reversible, I would be able to tolerate conventional chemotherapy, my plan B. Although my doctor, for whom I had a great deal of respect, said he wished I wouldn’t, simultaneously, I began taking well-researched natural supplements whose primary purpose was to boost my immune system. I told him that I was the only patient I had and unless he could show me how this would do me harm, I was planning on taking them. As an aside, I still take them and I haven’t had so much as a sniffle in four years.
My treatment began a scant two weeks after my diagnosis. I was scheduled to go into the hospital for five to seven days, during which time I would be given as many doses of the drug as my body could tolerate. IL-2 more than lived up to its reputation as a tough treatment. My side effects were textbook, but I was able to take additional drugs that were prescribed to minimize them. Though I was pretty much out of it my entire hospital stay, I saved what resources I could muster to flirt with the nurses and negotiate with my doctor for just one more dose. After treatment, you wait at home for two weeks and then do it all over again.
After the second round, they take scans to see if it's working and based on the results decide on whether it’s worth continuing or not. If you’re lucky and you’re a responder, you get to do a total of six weeks in the hospital scattered over several months.
I was lucky, very lucky. I’ll never forget the phone call I got telling me that I had a 50 percent reduction in my tumors. My eyes flooded with tears as I felt waves of relief sweep over me.
I was far from done with my treatment, I still had four more rounds to go through, complete with the trembling, hiccups, diarrhea, itching, skin peeling, and hallucinations that led me to pull out my picc lines at 5:30 in the morning because I looked at my watch and it was time to go to work.
After the next two rounds, I was down to only fifteen tumors. But after the last two rounds, the CT scan showed I still had fifteen tumors. “No way,” I said, ”not possible.” So I asked for a PET scan to be taken which measures the biological activity of the tumors. And sure enough, fourteen out of the fifteen were dead, and the last one was doomed.
As of September, 2006, exactly eighteen months after my diagnosis I was NED – no evidence of disease. As close to the word “cure” as they let you get. Two years of GM-CSF injections followed, and I still take numerous supplements, so far, so good.
Never give up, never give in.
Story submitted September 2009