MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 8 posts - 1 through 8 (of 8 total)
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  • in reply to: Allogenic Stem Cell Transplant #58757
    Siobhan Scully
    Participant

    Hello Joanne, Thank you so much for taking the time to response to my query! It really is great to have this forum
    which gives us great access to information we would otherwise not find. Can I ask you if you have other health issues that further influenced your decision to stick with the less aggressive treatment of stem cell transplant?

    in reply to: Allogenic Stem Cell Transplant #58677
    Siobhan Scully
    Participant

    Hi Sol,
    Thank you very much for the information and link to that webinar. It is hugely helpful . I really appreciate you taking the time to post your response to me.
    Wishing you the best.
    Siobhan

    in reply to: Mutations #58330
    Siobhan Scully
    Participant

    Really appreciate your thoughts and help in finding the answer to this question!
    Thank you so much!!

    in reply to: chemo -vidaza injections #57807
    Siobhan Scully
    Participant

    Hi Jim my husband has just finished his 6th cycle so very close to your own treatment time frame. Our understanding of this protocol is that the chemo injections slow the progression of the MDS disease and so prolonging life for as long as it is effective. It can also reduce excess blasts in the bone marrow and put the patient into remission which is required in order to have a bone marrow transplant. Hope this helps.

    in reply to: Allogenic Stem Cell Transplant #57785
    Siobhan Scully
    Participant

    Thank you so much Kathleen for your response and positive advice! Can I ask if you were on the azacitidine protocol prior to your stem cell transplant and if so for how long?

    in reply to: Scheduling Third Cycle of Azacitidine #57000
    Siobhan Scully
    Participant

    Thank you Owen! My husband’s next treatment dates are exactly the same as yours.
    Wishing everyone a very Happy Holiday Season.

    in reply to: Scheduling Third Cycle of Azacitidine #56905
    Siobhan Scully
    Participant

    Thank you Amy! That is reassuring to know.

    in reply to: IPSS and WHO scoring system #56503
    Siobhan Scully
    Participant

    Hi Joe, my husband was diagnosed last April with High Risk MDS and like you I have done some research on the disease and it is my understanding ( and I might be wrong ) that the IPSS and R-IPSS scoring system prognosis is based on patient’s who have has no treatment. I agree there needs to be more treatment options available in the future .

Viewing 8 posts - 1 through 8 (of 8 total)

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