i was diagnosed with MDS-5q 2yrs ago. I was on revlimid daily for 18 months but then I became neutropenic and RBC started to decrease. I have been on PRBC-2 units every three weeks since march of this year. My hgbl fluctuates between 7.2to 8.3 before transfusion and then rises to 8.6 after transfusion. I feel energy for about a week and a half and then return to fatigue, dizziness , arm and chest discomfort etc..My doctor who is an oncology hematologist and excellent in working with and for me, stated that without treatment I have maybe two years prognosis. I have been reading other posts on this site where people with a more complicated type of MDS have survived over 10 yrs. I've been for a second opinion and got same diag. There is no other treatment for me at the moment and when my ferritin level reaches it's safe limit, I won't be able to do chelation.
Anyone out there have the same problem?????,
