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Low Risk MDS and BMT

Home Demo forums Patient Message Board Low Risk MDS and BMT

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
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  • #58396
    maibl
    Participant

    My husband was diagnosed in October 2017. Watch and wait for 6 years, this past December (2021), things began to change. He became blood transfusion dependent, was started on Vidaza, 7 days a month. Wasn’t really responding after 4 rounds. Still needed frequent transfusons. Also severely neutropenic, Wbc 1.2 and ANC 0.05. Was also starting to have iron overload (Ferritin level in the 1800 range). Saw the BMT specialist, who wants to move forward with BMT. Now, after round 5 completed, my husband appears to be in remission.Hg 8.7, wbc 4. Now he’s about to start round 6. Primary oncologist sees no reason to “rush” into transplant. Specialist wants my husband to skip round seven, have BM biopsy in August, and go to transplant in September. We are struggling to decide which doctor to follow. BMT is scary, but it’s a cure! My husband is 59 with no comorbidities. Two matches have been found in the Registry. Alternately, he could potentially go on for years with Vidaza.
    Wondering if anyone has had simialr situation and how you decide what to do?!?

    #58397
    Joe Catalano
    Participant

    Have they looked into red blood cell inducing aranesp etc.

    #58410
    maibl
    Participant

    he had quite a few doses of aranesp but then had an extremely high Epoetin
    level

    #58423
    Joe Catalano
    Participant

    What did the high epoetin level mean they could not give him any more was he less tired, was he more tired? Deara Nesper create the hugging level

    #58464
    maibl
    Participant

    it meant the aranesp was not effective

Viewing 5 posts - 1 through 5 (of 5 total)

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