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MDS cancer support.
Does anyone have experience dealing with MDS mid stage. My husband and I would like to connect with anyone dealing with this cancer. He was diagnosed 1 1/2 years ago and his hemoglobin is stable in the low 90's. He's too old to have a stem cell transplant, so eprex is the only injection that may help him with fatigue. He's had one transfusion and it only lasted a few days. Does anyone have experience or suggestions as to what to expect in the future. The prognosis is not long.
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I’m now 74. Dx’d with MDS back in 2014 involving slightly low abnormal levels of HgB at 9-11 mg/dl and platelets coming in at 120-130K, high RDW-SD in 50’s. Iron, Folate, B-12 all normal. My bone marrow was normal morphology and core samples back then. I also have Right Atrial Heart Failure that’s improved from stage II to stage I due to an undiagnosed ASD and AFib episodes since age 24 and finally discovered in 2002 at age 50. Open heart to fix both ASD and a MAZE procedure to remedy AFib as multiple ablation’s failed. Ended up with pacemaker five months later. Blood morphology was normal until 2009. Two erythropoietin injections had no effect. Seeing a Hematology Oncologist and basically on the “Wait and See” list. About 1 in 3 adults over 60 do convert to AML. No clue where my RBC’s are being prematurely destroyed along with platelets. Not cardiac, liver, spleen or kidneys involved with destruction. Just repeating labs quarterly and waiting and watching is all I can do.
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