My story starts just before my 50th birthday, I was feeling good and just noticed a little lump in my neck area, no mole, no rash, just a slight lump. I saw my primary care doctor within two days and she recommended a CAT scan. Five days later she said I needed a biopsy - no worries I thought, remove whatever growth and move on. Well.....the biopsy came back Metastatic Melanoma! Five days later, on my 50th birthday, after a PET scan revealed more bad news - 12 tumors! 9 on my lungs and 3 in my chest cavity; one large enough to move my esophagus almost an inch. Talk about a devastating birthday!! I had three more doctors look for moles and they still have never found a primary. So after the first oncologist I was sent to said, "sorry I can't help you"; he luckily sent me to a great doctor at Portland Providence Cancer Center. There he informed me (after coming in on his day off) that the only known cure for Melanoma is IL-2, BUT it's either a homerun (it's working) or strikeout (it's not), and it works in about 8-12% of patients. Unfortunately for stage IV Melanoma, as I was to find out, this is as good as it gets. I started IL-2 in November, 2007, but not very well. After eight doses I ripped out my main line (I don't recommend this!). I went home bummed but came back two weeks later for my second cycle. All the while the doctors and nurses were VERY encouraging, saying it's not if you can take all fourteen doses a week, it is how well your body is responding. I had all the other symptoms mentioned with this therapy - chills, fever, headaches, nausea, neuropathy and itching beyond your wildest nightmares. I was able to complete ten doses on my second week, which is somewhat unusual. Than I had to wait a month to see if it was working - IT WAS. Over 50% shrinkage in my biggest tumors, no new ones, and my lungs mets seem to have disappeared!! So that meant I got to go back for two more cycles, I was able to take ten and eight doses respectively. Another month and again no new tumors and all the existing ones seemed dead. So back for two more cycles. This time I was only able to take eight and then three doses before they felt it was best to stop. I was constantly reminded that it does matter that your body understands what IL-2 is trying to do; NOT if you can take all the doses. I finished IL-2 in April, 2008
I have repeat scans every three months and went until December, 2008 when they found a "hot" node from my PET scan. I had surgery and they removed 50 nodes from my armpit. ONLY the original node came back Melanoma, the surgeon was totally surprised. I had twenty-five rounds of radiation (which some researchers feel stimulates the IL-2 effect). Since then I have had five scans all NED (no evidence of disease). I have been able to work full time (I was even able to work going through IL-2). I know I am blessed and the 8-12% success is NOT good enough and we need much more research for this disease. There are many wonderful researchers out there who need our support. This is a great cause please support this!!