Quote:
Originally Posted by Gloria J
Hello Ron and Susan,
I'd like to chime in with Lisa and Hopeful on their advice to give the immune suppression therapy time to work, and not jump to transplant.
Good luck to you both, and hang in there, there are many of us out here who didn't respond in six months, but did approve over time. Our bodies don't know deadlines, and they're trying desperately to heal - give them the time to do that.
Best wishes,
Gloria
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Hi GloriaJ,
Thanks so much for your suggestions and interest. I see that you are medication free now and am so happy for you. It's so true that health is a relative thing. Your family doc would be upset with platelets in the 60's but having been far lower than that while sick makes us appreciate getting closer to normal.
I'm a bit over 9 months since ATG with solid, low numbers and would be surprised but happy for it to kick in now. I'm certainly not going to jump into a BMT as it's too risky, at least for now. I feel more boost in energy from getting off the Prograf than I ever did from the PRBC transfusions after ATG, but it won't show up in blood numbers, I bet. I get a BMB tomorrow AM and hope some treatment options turn up from the results. It's funny how you go from dreading tests to hoping something will show up!
Thanks for the magnesium tip. My cramps seem to be better the last couple of days with the combination of 5 days off Prograf and addition of magnesium supplements once a day. No diarrhea either. I think the immune suppressant drugs do a lot to our bodies. I've not needed a daytime nap since being off Prograf so it was the culprit as much as the AA, I guess.
Good luck on your remission and thanks for the help. BTW, does your hospital have a cancer wellness program? Mine does and it's wonderful for helping with anxiety and emotional issues that AA and cancer generate.
Thanks,
Ron