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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 4 posts - 1 through 4 (of 4 total)
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  • July 26, 2018 at 10:14 am in reply to: Spliceosomal mds #36974
    Myra Shaw
    Participant

    Terese, I am getting ready to start a Phase II clinical trial. It is a combination of Vidaza and an unnamed drug APR-463? I start on Monday. I am diagnosed MDS RAEB2 with a TP53 gene mutation. I do not qualify for a transplant or stem cell as I have had a kidney transplant 5 years ago. This is my only hope for extending my life some. This trial is being conducted at 4 locations. Anyone else doing this treatment?

    July 17, 2018 at 11:39 am in reply to: Has anyone been turned down for a BMT? #36901
    Myra Shaw
    Participant

    Yes, I have been turned down. As a renal transplant patient, they feel I would be too high of a risk. I also have the TP53 mutation but my MDS EB1 is not chemo related. I am looking at doing a clinical trial of Vidaza and another drug APR-246. It is my understanding that this trial is being conducted out of Cornell also.

    Please keep me posted on your experience

    July 5, 2018 at 11:46 pm in reply to: MDS and Drug Study Options #36776
    Myra Shaw
    Participant

    Thank you. Are you a patient? What treatments did you take?

    July 5, 2018 at 11:43 pm in reply to: New Vidaza Patient #36775
    Myra Shaw
    Participant

    Is anyone on the drug trial Vidaza and APR-246. How is it working and how are you feeling?

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