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Decidibine Treatment

Home forums Patient Message Board Decidibine Treatment

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  • #53807
    Nelissa Godin
    Participant

    I will be starting on treatment with decidibine for treatment of MDS in January. I would like an idea of how many months people on this forum have taken it before they had an increase in or return to a previous quality of life. I can’t walk across the street to the mailbox or take my dog for a walk – extreme shortness of breath and pounding heart. Currently my hemoglobin level average 8.4 after transfusion but go down as low as 6.8. Thank you all

    #53811
    Tom Barlows
    Participant

    get 4 days injections, 4 weeks off.
    Also, include steroid for comfort.
    Test blood weekly if hemoglobin less then 10 get redicrit injection.

    I also have a hard time breathing with little exercise. Especially if hemoglobin goes much below 8.

    Seems to only stabilize counts, red. White and platelets still very low.

    Treatments so far 18 months. Recently applied to city of hope in Duarte,CA for 2nd opinion.

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