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Terri Erdman
ParticipantHi Amy,
Your father was diagnosed before my husband but here is his info.My husband is 58 and diagnosed with high grade MDS with extra blast and TP53 mutations on January 10, 2019. He was very active and in great shaped prior to diagnosis. He had 2 courses of decitabine. He continued to exercise and function normally during treatment. We even took our RV from WI to Louisiana between treatments!! He tolerated this drug quite well. No side effect, kept his hair and blasts dropped from 9% to less than 1%.
He received HSCT from our son on April 24th. He has had significant GI effects from conditioning, transplant and anti GVHD drugs. However, those seem to have calmed down. He is at Day +36, he has been home now for a couple of weeks. His bone marrow biopsy, taken last week, showed no blasts and all blood counts are either in normal range or trending towards normal. His medical team is very happy with results.
Right now his biggest issues are staying hydrated and fatigue. He has a lot of GI issues. He lost 15 lbs since the transplant. We know he has a long way to go.
Don’t get hung up on the numbers. Find an oncologist you trust, read as much of you can and make a leap of faith. This therapy is not easy.
ParticipantHi Donna,
My husband is 58 and diagnosed with high grade MDS with extra blast and TP53 mutations on January 10. He was very active and in great shaped. He had 2 courses of decitabine. He continued to exercise and function normally during treatment. We even took our RV from WI to Louisiana between treatments!! He tolerated this drug quite well. No side effect, kept his hair and blasts dropped from 9% to less than 1%.He received HSCT from our son on April 24th. He has had significant GI effects from conditioning, transplant and anti GVHD drugs. However, those seem to have calmed down. He is at Day +19 and hoping to go home within the next couple of days.
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