Quote:
Originally Posted by susansr
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
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Hello again Susansr,
Thanks for the questions. The BMB went well last Friday and I opted for twilight anesthesia and am so glad I did. I've watched the procedure on Youtube and it seems barbaric. Anyway it will be two weeks- August 27th before I see my hematologist and get the results and we will try to come up with a plan. The nurse gave me a copy of my CBC drawn before the BMB and my HG had dropped from 9.1 to 8.6 in one week and platelets from 32 to 31. She said that standard procedure is to transfuse packed red blood cells when HG was 8.5 or lower. It seems like I'm going in the wrong direction but will get another CBC before doc's visit on the 27th. I looked back at my blood results and my numbers are lower than they were when I had the ATG in Nov.
I'm not really sure whether the doc is happy with taking me off Prograf or not. I asked for a 2 month holiday and he said to go off it altogether. Either way it's not even 2 weeks that I've been off it now and I feel better regardless of the HG numbers. I can't even imagine how others tolerate the dosages of 10 mg to 20 mg twice a day.
The only suggestions doc had two weeks ago were to investigate NIH clinical trials and as a last resort look up BMT studies. I have no donor so that is definitely a last resort. The NIH studies were all in Maryland and seemed to be trying stuff I've been on. If I don't become transfusion-dependent I can tolerate things as they are, but there is no guarantee things won't change. I guess that's life! Has your doctor made other suggestions for you? How much Prograf were you on and how did it affect you. Thanks for staying in touch,
Ron