MDS is a bone marrow failure disorder
MDS is a blood cancer
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Viewing 11 posts - 1 through 11 (of 11 total)
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  • in reply to: AML Cytarabine and Venetoclax Question #46800
    Shelley Frady
    Participant

    Thank you. We did go to MDS center for Excellence that is where they found that it had progressed to AML.

    in reply to: Vidaza Stopped Working #46744
    Shelley Frady
    Participant

    This must be a Phase 3 trial then because the paperwork said 2 out of 3 would actually receive the medication one out of 3 would receive “doctors choice”. Whatever that means?

    in reply to: Vidaza Stopped Working #46742
    Shelley Frady
    Participant

    The MDS Foundation contacted the Center of Excellence at Vanderbilt and we have an appt tomorrow. I don’t know if they will give us any different news but we’ll worth a second opinion and so thankful, never thought we would get in so fast.

    in reply to: Anyone with Very High Risk MDS and no transplant #44728
    Shelley Frady
    Participant

    What is a mini transplant?

    in reply to: Mixed bag of stuff. Need remedy or support #44610
    Shelley Frady
    Participant

    My mom’s oncologist said she would have pain with MDS. He said the pain comes from the marrow working so hard to try to do its job.

    in reply to: Mom was diagnosed yesterday #44579
    Shelley Frady
    Participant

    Thank you. Yesterday’s infusion went much better with no nausea. They premeditated her with zofran

    in reply to: Mom was diagnosed yesterday #44528
    Shelley Frady
    Participant

    Thank you everyone that has responded. I am going to research some more, all these results are all new to me. I just know if the Vidaza continues to make her sick she will consider stopping it. She has fought so long and been through so much just trying to save her vision and lost it anyway. She was so excited to be having the cornea transplant and because of her hemoglobin it was cancelled, then this. She has been through hell the past 4-5 years.

    It was just her first treatment so hopefully they can premedicate her with something for nausea if it continues.

    in reply to: Mom was diagnosed yesterday #44523
    Shelley Frady
    Participant

    Thank you for responding.

    She saw the doctor and her first chemo today, port placement tomorrow then more chemo. She was very sick after we got home.

    More results from the biopsy was back it is worse than what he initially thought. He moved her to very high risk and said median life expectancy is 9 months but he was shooting for 18 months with the chemo. Not easy to hear at all. I am assuming he meant 9 month even with Vidaza? Not certain though.
    Heartbroken at the moment.

    in reply to: MDS question #44512
    Shelley Frady
    Participant

    We are in the US

    in reply to: MDS question #44508
    Shelley Frady
    Participant

    My mom was only diagnosed 2 days ago and the oncologist said it is. That is all I know.

    in reply to: Blood Transfusions at home #44503
    Shelley Frady
    Participant

    I am a home health nurse and I have never known of blood being given at home. There is a service called palliative care. You can check and see if there is one local to you. If you can’t find anything some hospices provide palliative care.

Viewing 11 posts - 1 through 11 (of 11 total)

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