I have survived Stage 4 for 14 years!
I felt great in summer of 2001 when I noticed a small 3/4 inch lump on left chest just below the armpit region. At first the doctor said it was just a cyst or lipoma and not to worry. Four weeks later I was told the same thing when it was firmer. Another four weeks past before I could convince the doctor to biopsy it–it was even a little larger by then. He said it was unnecessary but that I would probably continue worrying if he didn’t do something. Three days later he called me in tears–having delayed my diagnosis by putting me off for so long. I forgave him immediately, and again called him to see how he was doing three weeks later when I heard through the grapevine he was distraught. I forgave him AGAIN and told him to get some sleep so he could continue giving the best possible care to his other patients.
Now the fun started:
Firstly, I was told I had 6 to 12 months of live which was disheartening. I don’t know why I was lead to do the following: I started a clinical trial at Colorado Med Center with four episodes of neo-adjuvant biochemotherapy which entailed one week in ICU each month for 2 months, then a month when I had surgery, then two more rounds of the same chemo regimen. The meds used were dacarabazine, vinblastine, interleukin, interferon, platinum. Colony growth stimulating factor (cGSF) was injected frequently to kick-start my suppressed bone marrow. Vomiting, diarrhea, profound weakness and massive edema were the main issues. My tissues would fill with fluid that leaked from my capillary blood vessels and my lungs would fill with fluid. One time I had gained over 40 pounds in just one week, which came off in a day with Lasix. When my lungs were full of fluid I could barely breathe so I was on oxygen, etc. It seemed we had stopped the melanoma cold. Then four months later small masses began to appear in the original region.
I was given a regimen of an epithilone(Taxol-like drug), and that once again put the brakes on. Four or five months later the cancer showed up again. This time I was given gene-therapy where they injected my tumors with a substance that would change my DNA, thus making the cancer more susceptible to my immune system to fight it. Later on thalidamide was tried after more recurrence. Three years later my cancer was back and I enrolled in a trial where they gave me an anti-angiogenesis drug called PI-88—-strictly experimental. All of the other patients getting it for melanoma and pancreatic cancer eventually died. I injected myself for 18 moths with PI-88 and finished it finally in 2004—3 1/2 years after first diagnosed. PET-CAT scans (countless) have been negative.
The other side of the story:
Am overjoyed to have my life back, however the permanent side effects have been rough. Severe peripheral neuropathy and damage to my heart (pacemaker and heart failure medication).
All-in-all I would do it all again. Live each day to the fullest! My faith became very strong through all of this and I was able to support many of my fellow patients. I wish you only the best and pray for your recoveries!