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T8, MDS, PNH

Home forums Patient Message Board T8, MDS, PNH

This topic contains 1 reply, has 2 voices, and was last updated by  mdsfound 1 week, 3 days ago.

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  • #47504

    Kathryn Starlyn
    Participant

    Greetings.

    I am new to the message board. I was diagnosed with MDS February 2017. The bone marrow biopsy revealed trisomy 8. Is there anyone here with t8 and MDS? I have been on wait and watch since February 2017. My numbers are staying very steady and my numbers are not terribly terribly low. Borderline normal in most cases. These diseases make me nervous because wait and watch is a blessing but yet I feel like I should be doing something to treat it. I have done tons of research being my own best advocate. As I understand it having t8 puts me in the intermediate MDS risk group. My clone size is less than 2% at this point. I understand that MDS can progressed AML and the AML is less responsive to treatment because of the trisomy 8. I am not very open to a transplant. Regarding everything I’ve read about it it does not seem worth it to me. If anybody has any insights to some of these specifics it would be greatly appreciated thank you

    #48679

    mdsfound
    Moderator

    Dear Kathryn, Thank you for posting information regarding your health. 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 just to make sure you are not being undertreated. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/.

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