MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

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.

Forum Replies Created

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • in reply to: Remission #49154

    Aureta
    Participant

    How you keep antibodies low with having that many transfusions?

    in reply to: Luspatercript #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.

    in reply to: Pros n cons of having port #47510

    Aureta
    Participant

    Thank u. Having another round of Vidaza next week n will discuss with Doctor. Appreciate input. Also attending MDS Forum in Seattle on September 10 so hopefully will meet people with MDS. Live in a small community so haven’t met anyone with this. Luckily I found this site so I have some others to ask questions n learn how others r coping.

    in reply to: Swooshing in ears #46541

    Aureta
    Participant

    Thanks for input. Thought that was what it meant. Am taking Vidaza n started having swooshing again in ears n was hoping that wasn’t what it probably meant. Sounds like it’s stopped working but will see at next labs.

    in reply to: Vidaza treatment #44659

    Aureta
    Participant

    I believe I will get 1 shot daily of Vidaza for 5 days once a month. I am still receiving Aranesp once a week but so far seems to have stopped working. Thanks for tips to help with the Vidaza.

Viewing 5 posts - 1 through 5 (of 5 total)

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert