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Possible MDS

Home Demo forums Patient Message Board Possible MDS

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  • #27111
    Maria Morgan
    Participant

    My brother, 62years old is diagnosed as possible MDS. He is also HIV positive on Atripla. He had severe anemia and needs blood transfusions every 2 weeks . His white blood count is also low but his platelets are normal.
    After extensive blood work and bone marrow biopsy at one of your centres in Bangkok , the final diagnosis is possible MDS. He has a dysplastic bone marrow , his chromosome is abnormal with a third chromosome, his blasts are low . His hermatologist ruled out HIV caused as his CD4 is over 500 and his viral load is undetectable . No sign of parvovirus and his liver and kidney are all ok, so are his folic acid and B12. If it’S MDS, it’s low to intermediate risk . Recommended 3 options of treatments: repeat erythropoietin injections again , this time in high dose of 30,000 units instead of 10ooo units previously done, x 1 for 6 weeks. The second option is lite chemo on VIDAZA snd third is to do the IVIG injections . The doctor seems to ba a loss to guide us as to which treatment would be beneficial for my brother . If you coul think I’d anything , please let us know .
    Really appreciate !
    Best, Maria

    #27216
    mdsfound
    Moderator

    Dear Maria, Thank you for posting information regarding your brother’s health. I know this is a difficult situation for you and I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment except supportive care like transfusions or epogen (Procrit).
    Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which you can view here https://www.mds-foundation.org/bboh/. I hope this information helps.

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