MDS is a bone marrow failure disorder
MDS is a blood cancer
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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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  • in reply to: Stem Cell Transplant #49059
    Cammie Vogel
    Participant

    Hi Jeff,

    Thank you so much for your response, that would be amazing if you could speak to him. Would you mind giving him a call? His number is 310-600-0314.

    Thanks again!
    Cammie

    in reply to: ASXL1 & IDH1 Mutations #48758
    Cammie Vogel
    Participant

    Thanks so much for your reply, Michael. Unfortunately, my dad is very anemic with his hemoglobin dropping into the 7’s, he’s had 4 blood transfusions since May 11th. He needed another one 7 1/2 weeks later and now it’s been about every 3 1/2 weeks. He’s been on Tibsovo for the IDH1 since July 4th but it hasn’t seemed to really kick in yet, but the Dr said it’ll take 3 months to know if it’s working. His platelets are 121 and now his WBC is low at 2.0, as of the past two weeks.

    He’d really like to connect with you offline, would you be willing to speak to him? Not sure how to get your contact info privately…

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