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Sorry you have had to learn about MDS the HARD way. Just know that it is a roller coaster ride and sometimes you just have to hang on. It is also a disease of one, as someone so aptly put it last week, I think, as each patient is different within the disease classification. Some people's MDS stays stable for years and some people's, unfortunately my husband is one of these, is quite aggressive. Hopefully you will be the one that stays stable for a long time.
You have found a great forum here with lots of knowledgeable and caring people. Good luck at Mayo and God bless you.
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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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