I was diagnosed August 2018 with MDS. Local hematologist did BMB and found blasts at 16%. A month later Stanford did BMB and found blasts at 10%. I started on Azacitidine and procrit injections. Second Stanford BMB in January had blasts at 8% and treatment was changed to venetoclax and decitibine. In May I spent 15 days in the hospital with infection that they never found the source of. June Stanford BMB showed blasts at less than 1%. I stopped both treatments. Although I was “in remission” my numbers were very low and I spent the summer getting transfusion of blood and platelets every week or every other week. Another Stanford BMB the end of August showed blasts still at less than 1%. In September I started on 50mg of Promacta daily. My numbers are now higher than they have been in over two years. Hgb is normal, neutrophils very close to normal and reds, whites and platelets moving up slowly. Since October I’m felt like myself again. Even went back to paddling on the dragon boat. I am 73. When I got the diagnosis it sounded like my MDS was very aggressive and I would be luck to survive a year.
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