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DiscussionMyelodysplastic Syndrome (MDS): Did you have stem cell transplant?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 27 8:12am | Replies (54)Comment receiving replies
Replies to "Are there any members on connect with MDS (Myelodysplastic Syndrome). How long have you had MDS?..."
I posted more detail here, just a few posts below.... Revlimid reaction after 15 days - a significant rash, severe enough to discontinue. That was after Procrit failed - my husband - he had weekly Procrit injections at 40,000 units from March 2018 - November 2019. He has been severely fatigued since December 2017 prior to the diagnosis, never having regained enough energy to live a "normal" life. He can walk about 100' at a time, then fatigue sets in. Sometimes he cannot even walk that far. He sleeps 5 or so hours during the day, sleeps all night, wakes up tired, stays tired all day, and cannot perform routine tasks. His hemoglobin now hovers around 8, sometimes going as high as 8.3 during the last six months.
A bone marrow assay with full DNA sequencing at Mayo revealed the 5q about 8 months after the initial bone marrow aspiration which was non-specific but suggested MDS. We are told my husband will be on Vidaza (because Procrit and Revlimid failed) until Vidaza fails, an unknown period of time; then transfusions. We are realists about this, knowing there is no cure, and that his condition will become progressively worse. Too old for stem cell - age 78.