I was diagnosed with MDS-EB-2 in January 2019, have had series of 10 Vidaza treatments. First 3 months were very difficult. Extremely tired, queasy. In hospital 3 times, for UTI, a-fib and blood clots in lungs and legs, lost 40 lbs. Now I am feeling good, have 3 weeks between treatments, blood work normal. Will continue with Vidaza. Am 80, so bone marrow transplant not planned. Just living one day at a time (but planning ahead for trips to Belgium/Netherlands and Africa next year) and really grateful that the Vidaza is working so far. Would like to hear from others with MDS-EB-2. Appreciate all the info shared on message board.
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