Quote:
Originally Posted by flyguy
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
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Dear Ron,
Hope the bm biopsy went ok. So glad to hear how much better you are feeling being off prograf. Do your docs think your numbers are stable enough to be off of drug? You know I'm in same boat of consistent low numbers, yet remaining above needing transfusions. Please inform me what their suggestions are for the future. My docs have agreed upon idea of waiting another 6 months before any other procedures. Good luck, SusanSR