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Luspatercript

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This topic contains 5 replies, has 4 voices, and was last updated by  Aureta 2 days, 3 hours ago.

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • #47428

    Michael Busalaki
    Participant

    Hi i have the type of mds that is only effecting my hemoglobin counts. I get transfusions about every two weeks. I currently go to a center of excellence in St.Louis,but they are not in the test program for this drug but i hear it is showing good signs. Does anyone out there have recommendations of a center of excellence who participates in this test drug. My other question is does anyone have any idea when the drug will be FDA approved. Thank you

    #47438

    Carl Schneller
    Participant

    Hello Michael, I have the type MDS that is only affecting my hemoglobin counts too. I was diagnosed in July of 2018. I was on Procrit for 9 months but did not help me. My hemoglobin got down to 6.9 so last Monday, July 15, 2019, I received my first transfusion and feel much better and my hemoglobin was 8.9 on July 22. I am hopeful that Luspatercript will help me too. I believe the FDA may OK this drug in December or soon there after. As for the time being I plan on more transfusions.

    #48672

    Emma corcoran
    Participant

    Hi, I read that they are hoping for FDA approval in December this year. If you go to the luspartercept website, (the website of the company that makes it), you’ll see a list of all clinical trials.

    #48682

    Michael Busalaki
    Participant

    Thank you

    #48686

    Carl Schneller
    Participant

    Hello Micheal, I have had another bone marrow biopsy and find I have 5Q deletions and 7Q deletions. The good news is that my blasts are zero. We are going to try Revlimid now. Will let you know how that goes. As for luspatercept, my doctor at Mayo clinic says it may be quite some time before it becomes available. Possibly up to a year but no one knows. My blood transfusion went well but will be needing another next week, lasted 5 weeks. Hopeing Revlimid will help. Gods blessings to you!! Carl

    #48687

    Aureta
    Participant

    I was diagnosed with MDS with hemoglobin only involved a year ago. Have been on Vidaza for 6 months and have not received a transfusion since February. Was at a MDS forum in Seattle last week where I first heard about luspartercept. Was told FDA will be considering approving it in December but I didn’t think to ask if okayed, when it would be released. Sounds very promising so hopefully it will be released soon. Was wondering when getting transfusions if anyone had trouble with iron overloads and also antibodies.

Viewing 6 posts - 1 through 6 (of 6 total)

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