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Patti,
I have been where you are and I know how frustrating and scary it can be. I think most criteria for giving PRBC transfusions is under 8.0 but they always give Al 2 units. He takes Amicar for clotting and has lived with platelets under 10 for a year with no bleeding problems, thank goodness.
We go to a local oncologist now and he actually listens to me and twice he followed my suggestions. One, he put Al on Dacogen and, two, after keeping Al stable for several months I asked him if he thought lowering the dose and seeing if he stayed stable would be a good idea. I had read on the Internet where that worked for elderly patients and was less toxic. So far it has worked for us! But I'm not naive to think it will work forever. Just taking one day at a time.
If the clinical trial Moffitt is talking about is the one I read about Online it actually cured the mice of cancer. Of course they have no way of knowing if it will be safe and work until it's been through years of trials.
I am so praying that Dean and you will find peace with whatever decision you make.
This disease is so terrible on our loved ones and on us. Al is not the same person and he is ALWAYS tired but manages to keep going. He does take a lot of naps which he NEVER did before MDS/AML.
Keep in touch,
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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