[marmab]

I don't know if my story will help at all in your decision-making, but the similarities of your wife's case and mine struck me. I had my transplant at Beth Israel Deaconess Medical Center in Boston, not at Anderson, but I'm not sure that outcomes are likely to be significantly different at major transplant medical centers. My case was very much like your wife's. No treatments worked for me (see my signature). My marrow celluarity, measured in many BMBs, was never over 10% and basically the only platelets I had were the ones I was getting via transfusion twice a week.

Because I was very healthy and active, I was EXTREMELY reluctant to go to transplant. It's hard for me to convey how hesitant I was. The survival statistics (for MUD transplants for AA, 60+ years-old) worried me, but the problem is that the statistics ultimately may not be that helpful in decision making. There aren't that many folks out there getting transplants who fall into this particular category. So how informative are the statistics, given the small numbers in this age group? Probably not very. Each case -- and there really aren't that many of them -- is unique. And so I made myself crazy doing thousands of hours of research that, in the end, didn't help me make the decision. I'm a bit embarrassed and chagrinned to say that, instead of making a conscious decision to go to transplant, I finally simply gave up, and gave in to the pleas of my medical team to go for transplant after two years of being transfusion dependent. It was a torturous decision for me, full of unknowns, but in hindsight it was clearly what was needed and I should have done it sooner. I am doing very well, back to normal in fact, with no GVHD! The regimen I had (Campath, fludarabine, cytoxan prep, followed by marrow transplant, not stem cells) is thought to be effective in reducing the incidence of GVHD. And I was fortunate to have a better than 10/10 match. I am happy -- and thankful -- to say that mine has been a success story. Even though none of the several treatments I had before transplant helped, and despite the fact that my medical team (and second opinion team) highly recommended it, I resisted transplant for too long. I don't want to give the impression that there weren't bumps in the road -- there were many: Several readmissions to the hospital, often for weeks (including an ICU admission for a crisis) for infections and complications, a destroyed thyroid gland, etc.. BUT, I am feeling fine now. I got through every problem with the help of my excellent medical team, and I now feel completely back to normal. Hope this helps in some way with your decision making.