July 22, 2019 at 11:23 am #47428
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 youJuly 23, 2019 at 5:43 pm #47438Carl SchnellerParticipant
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.August 7, 2019 at 6:13 pm #48672Emma corcoranParticipant
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.August 11, 2019 at 6:41 pm #48682
Thank youAugust 16, 2019 at 11:59 am #48686Carl SchnellerParticipant
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!! CarlAugust 16, 2019 at 12:44 pm #48687AuretaParticipant
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.August 19, 2019 at 1:19 pm #48698
Thank you for the info i was diagnosed almost a year ago and was told i am low risk as of now. I am 60 in good shape still work everyday. I have had approximately 26 units of blood over that time. I am currently on procrit and then Jadenue for iron overload just hoping this new drug becomes available and works for me.August 22, 2019 at 2:09 pm #48722Ann JonesParticipant
I’m starting on Revlimid after becoming transfusion dependent in December. 2 units every 3-4 weeks.
Vidaza almost killed me, truly. I went into heart failure and pulmonary edema with resulting intubation. 2 weeks in ICU.
Was told by my physician at Mayo that it was rare and would likely resolve. It did but still on cardiac meds due to some resulting heart damage.
Fingers crossed with Revlimid though I do not have 5q deletion. I’m hopeful.
Holding on for Luspatercept!!August 24, 2019 at 6:30 pm #48740Lee VanceParticipant
Hi, Luspatercept is going to be approved for 2 diseases should be out in December and approved for MDS in April. I’ve been waiting for Quite sometime. In the meantime I’m on Revlimid 21 days on 7 days off. Shot of Aranesp once a week and blood transfusions when needed.Been at this for the past year and half. Prior to that it was Jakifi. Hope this helpsAugust 25, 2019 at 7:38 am #48742Kathy StermerParticipant
I have been transfusion dependent since December of this year and am up to 30 transfusions so far and yes, iron levels high and also antibodies now in blood. So far Revlimid failed to treat, now on Vidaza so far no response after 4 cycles. BMB which I’ve had 3 since starting treatment shows little change in disease. Blood bank now informed me they need 30 days notice if any surgery to procure matched blood for me due to antibodies and am using a Tumeric cream daily for high iron levels hoping it has some benefits in reducing high iron levels. Still waiting for response on all fronts of this disease.August 27, 2019 at 2:21 pm #48747
Thank you and good luck we all need it
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