[Laura]

Originally Posted by flyguy

Hi Folks.
I've been following this thread for a few weeks and it's hit me at a somewhat troubling time in my MAA treatment path. I was diagnosed about 2 years ago following a BMB and have undergone ATG, rituximab infusions, CSA, and Prograf. I had my most recent BMB three weeks ago and saw my hematologist last week for the results. In short he said that my present results are almost exactly where they were when I first saw him. It's now been 10 months since my ATG treatment and IST. HG is now 8.5-8.7 , Platelets in low 30,s WBC in 3's, RBC in 2's. I had problems with CSL and Procrit and am off all treatment now indefinitely. The numbers are the same on or off, but I do feel a lot better off Prograf.
BMT is not a viable option since doc says that because of my age, survival rate for first year would be 50% and quality of life no better. I feel a bit like I'm working on a high wire without a net. I wasn't any sicker after receiving news that I have made no progress, but he sort of put some big footprints in my garden of hope! I will continue to get blood drawn every 2 weeks and start transfusions if they are needed but there is no "what if" strategy and I'm not taking any medication but Acyclovir. I have a great Wellness program at my hospital and excellent oncology counselor but it's a very lonely time emotionally. I'm sure I'll adjust to it. I've always had another test or drug to try and being on indefinite watch and wait with no ongoing treatment has challenged me almost as much as the original diagnosis did. OTOH I have wonderful resources I've discovered in the last 2 years and many great friends but it's still a disquieting time right now.
Thanks for listening.
Flyguy

Can I ask how old you are? It almost seems like you need a second opinion? Although your counts aren't horrible, you don't want to have to be getting transfusions all the time either (if it comes to that). Where are you being seen?
Laura