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New MDS diagnosis, I welcome advice

Home forums Patient Message Board New MDS diagnosis, I welcome advice

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This topic contains 5 replies, has 3 voices, and was last updated by  Peter Nuspl 4 days, 17 hours ago.

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    Judith Barnes

    Hello! I’m 75 years old. In 2018 I underwent treatment for inflammatory breast cancer, BRCA1 positive. In 2003 I’d been treated for a different (yet similar) breast cancer with chemo, lumpectomy, radiation. Now I find out that my treatment caused a few mutations in some bone marrow cells and I have high risk (secondary) MDS. A bone biopsy (to explain my decrease in platelets) revealed mutations in DNMT3A, SF3B1, and TP53. My FISH report specified deletion 5q and trisomy 8. Good news, NO EXCESS BLASTS!

    I am in the UCLA system and they are one of several centers of excellence nearby. The week after next I will begin treatment with Azacitidine. My husband will take me for the first treatment at least, as I don’t know how it will affect me. I found a useful article that recommended taking Ondansetron prophylactically, which I will do, so I no longer have that question. But I welcome any additional advice you experienced participants can provide.


    Kathy Stermer

    The ondansetron or zofran should be part of your treatment plan. I find it is so constipating for me I can take it a few hours after I get my Vidaza to last me into evening as it’s only every 8 hours and I load up on Senna 4 tabs daily a few days before and after treatment. As everyone responds differently you’ll have to see what works best for you. Hopefully you’ll have a good response.


    Judith Barnes

    Thanks for the Senna tip. I still have Miralax from my 2018 opioid constipation adventure, so I’ll start with that. How long have you been getting Vidaza?


    Kathy Stermer

    Just finishing up my 5th cycle. So far nothing happening but going another round and see where we’re at. Might need another biopsy but last 3 done for lack of progress shoes disease stable. My body just doesn’t want to cooperate.


    Judith Barnes

    Hang in there! At least you’re stable. But I see how you could be a bit discouraged after five cycles.


    Peter Nuspl

    Judith Barnes:
    [Perhaps there is some confusion with the title on your post and the contents.
    See my reply about Lisinopril and Amlodipine.
    As for MDS-MLD, I am now on “Wait and Monitor” regimen.

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