MDS is a bone marrow failure disorder

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74 year old with MDS

HomeForumsPatient Message Board74 year old with MDS

This topic contains 3 replies, has 4 voices, and was last updated by  BRIAN DOOLEY 2 months, 1 week ago.

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  • Author
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  • #33753

    Donald Bodda
    Participant

    I was diagnosed with acute MDS 2 week ago I came ill with MDS on July 17,2017 so far I’ve been having to take platates and blood about every 14-18 days, today I’m waiting for the drug Amacor to arrive so I can start it hopefully it will help.
    Can anyone give me some good advice on the best MDS clinic for research and treatment??
    I’m not giving up and i’M GOING TO FIGHT FOR AS LONG AS i CAN FOR MYSELF AND FAMILY.

    #33759

    Mark Simpson
    Participant

    karmonas Cancer Institute. That is who I am using.

    #33767

    mdsfound
    Moderator

    I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide http://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to patientliaison@mds-foundation.org. In the meantime, you can also view this video http://www.mds-foundation.org/bboh/. I hope this information helps.

    #33785

    BRIAN DOOLEY
    Participant

    I am not sure where you are located. In California, Dr. Harold P Koeffler at the Cedars-Sinai Medical Center is the best. He is also on the MDS Foundation list of MDS doctors.

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