Quote:
Originally Posted by flyguy
Hi Susan and Marian,
I'm afraid I don't have any answers but just wanted to say that I understand your anxiety and concern about the future. I'm 9 months out of ATG (horse) and saw oncologist yesterday. My numbers are just as they were before treatment-- Platelets 32,000, HGB 27, and RBC 2.2. He didn't suggest a second ATG because we got no response and I've had terrible side effects with Prograf so he took me off it. I'll get second BMB on Friday and we will discuss the results in 2 weeks. I'm 69 and he ruled out BMT because of risks and his only suggestion was a clinical trial with Neal Young at NIH. I feel a little like an orphan with no ongoing treatment but I guess it's just watch and wait for a while to see what's going to happen. I'm almost hoping something treatable shows up on the BMB as I'm discouraged for now. Good luck to both of you and I hope your treatment plans hit the mark.
Best of luck,
Flyguy
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Dear Flyguy: thanks for your response. wondering if you are transfusion-free since your numbers are where you mentioned; if so, that's a great thing in of itself. What does your doc say about maintaining this while not on Prograf any longer? What kind of side effects hit you if you don't mind me asking? I get terrible tremors and since it caused me to be magnesium deficient, I get cramping. I also am considering contacting Dr. Young at NIH. Probably a good suggestion for you too. Let me know!