MDS is a bone marrow failure disorder
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Viewing 5 posts - 1 through 5 (of 5 total)
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  • in reply to: Low Risk MDS and BMT #59005
    Michael Cook
    Participant

    What can I expect the first 8 days of hospitalization for the transplant?
    I am 53 and I have low risk MDS since Dec. 2018. My CBC started dropping below HGB 10
    and PLT below 40 this past May. Once they dropped, they want stay up after transfusions.
    They started Vidaza. After 4 rounds, no change. Stopped the Vidaza and referred me to
    a BMT Doctor. I am told that they have a 100% match donor and I will be looking at
    starting the transplant procedure in 5-6 weeks.

    in reply to: Most Recent CBC Shows Further Deterioration #59004
    Michael Cook
    Participant

    I was diagnosed with Low Risk MDS in December of 2018.
    In 2022 my CBC started getting bad every check. I lived
    in South Carolina and I was requested to come to UAB in
    Birmingham, AL, where my MDS Doctor is, and start Vidaza.
    4 rounds of Vidaza and it was getting worse instead of better.
    They stopped the Vidaza and referred me to the BMT Doctor.
    They found me a 100% match donor and I will be going in for the
    SCT in February. I am Red Blood Cell & Platelet Transfusion dependent
    at this time. HGB continues to drop to 6.9 to 7.1 and then I get a
    RBC Transfusion. My Platelets drop and I have to get Platelet Transfusion.
    My HGB was at 7.1 Monday and Platelets are at 15.

    in reply to: New MDS Patient #45065
    Michael Cook
    Participant

    Thanks, Paul. I have a second opinion appointment scheduled at a COE Hospital this Friday. Getting another BM Biopsy and lab work. Last Oncologist informed that I am intermediate MDS with a High Risk of AML due to my defective 7Q. We’ll see what this one says.
    How is your transplant going?

    in reply to: New MDS Patient #44983
    Michael Cook
    Participant

    Follow up – I went to my first meeting at the MUSC Cancer Center in Charleston, SC yesterday. The Oncologist says that they are going to watch my numbers monthly and see how it goes. Numbers aren’t low enough to warrant doing a transplant right now. Going to see if I can get a second opinion of what’s going on from a Circle of Excellence Hospital, University of Alabama Birmingham Comprehensive Cancer Center.
    http://cancercenter.uab.edu/why-choose-the-uab-comprehensive-cancer-center/cancer-types/leukemia/

    in reply to: New MDS Patient #44938
    Michael Cook
    Participant

    Thank you for the input, Chris.
    So, are you a candidate for a transplant? If so, why aren’t you doing it?
    What kind of meds are you trying and did you find out about them thru research or your doctor?

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