MDS is a bone marrow failure disorder
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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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Viewing 10 posts - 1 through 10 (of 10 total)
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    Posts
  • in reply to: APR246 trial #49286
    Colleen & John V
    Participant

    Thank you. That’s weird that it won’t go through. My email is cvignati@metrocast.net

    in reply to: APR246 trial #49284
    Colleen & John V
    Participant

    I resent it

    in reply to: APR246 trial #49283
    Colleen & John V
    Participant

    Yes

    in reply to: APR246 trial #49281
    Colleen & John V
    Participant

    Herb,
    Did you get our email yesterday?

    in reply to: APR246 trial #49268
    Colleen & John V
    Participant

    That’s awesome news!! Did they say anything to you about minimal residual disease (MRD)? John’s marrow showed less than 5% but MRD -measured by flow cytometry- was high still. We’re anxious to see what next weeks marrow shows. Praying and hoping so much that this last round did it! Yes we were told that he has a higher recurrence rate so that’s why we need to get him to lowest number possible. Will you be having another round of chemo?

    in reply to: APR246 trial #49227
    Colleen & John V
    Participant

    Herb,
    Hope it went well today. Will keep you in our prayers for a great result! Please let us know how it goes!

    in reply to: APR246 trial #49220
    Colleen & John V
    Participant

    Herb,
    The regimen you are on is the alternate one he will be going to if they can’t get him low enough so we’re curious to see how well it works for you.

    in reply to: APR246 trial #49219
    Colleen & John V
    Participant

    Herb,
    We will keep you in our prayers that this regimen is working! John has a BMB on the 29th. Those results will tell us if he’s ready for transplant. Need minimal residual disease to be much lower than last one. We won’t have results till that Friday at earliest. Good luck & best wishes to you.

    in reply to: APR246 trial #49187
    Colleen & John V
    Participant

    Herb, how are you doing with your treatment? We are also being treated at Dana Farber.

    in reply to: APR246 trial #49186
    Colleen & John V
    Participant

    Paul, my husband is 56 and was diagnosed in July with high risk MDS with excess blasts and p53 mutation. He is being treated at Dana Farber and is also in the APR246 clinical trial. After 2 rounds his blasts went from 15% to less than 5% in the marrow but his doctor feels the MRD is higher than what he’d like before transplant. We were also told he still has p53 mutation. He is just finishing round 3 and will be having another BMB on the 29th to decide if he will go right to transplant or have more of this regimen or change to a different one. (He does have a perfect match) How are you doing now?

Viewing 10 posts - 1 through 10 (of 10 total)

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