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MDS with MF – Any similar experiences?

Home forums Patient Message Board MDS with MF – Any similar experiences?

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  • #2877

    Dear All

    I’m a 28 year old from Singapore. My dad (60) has been diagnosed with MDS and Myelofibrosis about 3 years ago. He undergone a BMT [using sister donor cells] about a year ago on the “Storb protocol” at the local hospital. The engraftment wasn’t ideal and he undergone another BMT [same sister cells] in Oct/Nov 04. It was a similar protocol except they used melphalan instead. During the last BMB done about a month ago, it showed 100% engraftment and his counts were stable or increasing. However, for the past 2 weeks, it has dipped; particularly his white cells which dropped to 1.5 from about 3. His haemoglobin also dipped from 10.7 to 8.7. His platelets are around 60k on Day 90. Recently, he appeared unwell too – headaches and feel like vomiting frequently. He is still on a low dose of cyclosporine. Other than vitamins and a drug that helps him control his urine at night, he is not on other medication.

    He has not been prescribed with Vidaza or any other MDS drugs. The consultant doc has not been able to shed any light on this drop so far but has ordered for another BMB.

    Can anyone share if they or their relatives have similar experiences?

    Is myelofibrosis a major issue? Have there been success stories to overcome it?

    Thank you all and wishing you good health.

    #2878
    Terri
    Member

    Can’t answer your questions unfortunately, But know that you have support and prayers here.
    Hope your Dad is well

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