Sep 20, 2007 - 7:07 pm
32 years of age. When I was 18 I had a malignant melanoma mole removed from my neck. Everything else was cleared and I did follow ups for about 4-5 yrs with no recurrence.
This year, back in March I noticed shortness of breath and went in for a check up. Dr. ordered chest x-ray which showed numerous lung nodules. Then he ordered ct's of my chest, stomach, and pelvic area. The results were not good. Tumor on my liver and over 20 in my lungs. Referred me to an oncologist and we decided on IL-2.
During the IL-2 treatments the tumors actually grew and I had no benefit from this horrible treatment. We then started on 2 forms of chemo, Taxol and Carboplatnum, they are working so far. Every 3 weeks i get a dose and every 6 weeks we do scans. I've had 7 doses and each scan showed some shrinkage in some and stablization in the others, no growth. I also had the gamma knife done on a little spot in my brain which seemed to work really well also. I complained about back pain, so he ordered mri of spine. It turns out that I have the disease back there too so we do radiation for a week and now my back feels better a month later.
So, treatments are working and I feel great. But what I don't get is why is it impossible or pretty close to, that I won't keep getting better? Or that when the Chemo Plateus, another treatment can't work just as well? My Dr. said that he gives me a 50/50 chance at 1 yr survival and 70/30 for 2 yr. What the hell? I'm only 32 yrs old and healthy. Isn't there an chance that I can keep this in remission for 5-10 yrs, maybe not complete remission but at least stun the growth?? Isn't it possible that within that time, they might come out with a better form of treatment that might work on someone my age and extend life even longer???
The Dr. said that eventually I will need someone to take care of me like my parents who I live with now because of this and that I shouldn't make any long term plans. I just don't get it. It's hard to believe that this could happen to me. He even mentioned hospice care might happen eventually. All of this while things are improving is what gets me.
Anyone have some advice or anything to add to this nightmare? Anybody else in similar circumstance?
Thanks for the help!