More good news to share with "the community". Just had my latest CAT scans and I'm still NED now just over 5 years since going Stage IV, 6 years since initial diagnosis at Stage III. A brief history- Diagnosed with Melanoma on left ear Sept 2004. One sentinal node microscopic involvement. Went on a Cancer Vax trial in Jan 2005. Scans 6 months later showed it had spread to liver and neck. Had tumor removed from Neck - left Mel in liver so I could do a trial. Started trial of Nexavar and Temodar. Also went on an almost Vegan diet (ate some fish) and started taking Tumeric supplements. Within 4 months liver Met had shrunk to "scar tissue". Stayed on drugs at full strength for 1 year. After 1 year they reduced the Nexavar dose by 1/2 and kept Temodar the same. Stayed on this regimen for another year and then dropped the Temodar (this ended my involvement in trial). Stayed on the Nexavar alone (still 1/2 dose with lots of breaks - more as time wore on) until I finally ended it in Dec 2009. I still take Tumeric but not as regularly as I probably should and I have started eating some meat, eggs - dairy in the last couple years although I still eat lots of vegitables and drink soy milk and avoid meat most of the time thanks to a very good wife (I guess she still wants to keep me around). Unfortunately from what I understand out of 146 people in my trial of Nexavar / Temodar, I was the only one with a "complete response". I'm sorry it didn't work out for more people. I'm a little disappointed that my Onc at Yale still thinks I should get scanned in six months but I guess caution is a good thing. Maybe I can convince the people at U of Penn I see to let me go 9 months.
Hope this post gives people here some bit of inspiration. There a quite a few of us "Stage IV" survivors lurking on this board.
Ed from Connecticut ("Ed_CT" - formerly just "Ed" until they forced me to change it.)