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MDS / RARS w/SF3B1 mutation
I was diagnosed in July 2015 after some years of anemia and fatigue. Diagnosis indicates my condition will not progress. WBC, RBC, ANC, Hgb and other factors have always been low. Have had transfusions every 6 to 8 weeks. Was on Procrit for a few weeks. It did not work. Started Vidaza which has not been effective in keeping my numbers up. Have now ceased Vidaza and been referred to Shands for second opinion. Also, ceased Vidaza last year for 2 months to enter clinical trial which was not effective. I am very curious about others experience with RARS diagnosis.
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Dx w/MDS-RARS 07/15. Treated w/Procrit & Vidaza. Neither worked. Now in clinical trial taking INCB053914.
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