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Waiting with low risk MDS

Home Demo forums Patient Message Board Waiting with low risk MDS

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #54660
    Michael Resman
    Participant

    CAPTAIN HOOK

    Crocodile bit off
    Captain Hook’s arm
    got his wrist watch

    MDS is taking
    a bite of my life

    So the Captain and I
    daily
    pause
    listen
    for the tick tock
    of time passing

    #54661
    Michael
    Participant

    I was diagnosed with low risk MDS in June, 2016. Five years no treatment, monthly blood draws and annual biopsies indicate no progression. Stay positive and live life is what I’ve learned.

    #54664
    Mary Roth
    Participant

    Having just been diagnosed with low risk MDS and placed on watch and wait, I was pleased to learn that it can be possible to go so long without progression! Thanks for sharing!

    #54682
    Niels Jensen
    Participant

    I have had MDS since 2005. IPSS Intermediate-1 at time of diagnosis. Next generation sequencing showed a single -Y mutation in 2016. Initially treated with aranesp and neupogen for about 2½ years. Had blood cloths – properly due to aranesp (unknown side effect in 2005-2006). Been on watch and wait since 2009. Hemoblogin, platelets and neutrophils continue to be just below normal. Blood test and phone consultation every about 8 months, but have emergency number to call if suddenly have high fever.

    #54704
    Roderick McCune
    Participant

    Michael, glad to hear of a positive outcome so far for you. I have asymptomatic mds with q6 month checkups. I have had abnormal cbc for 9 years now. on watch and wait. prayers and thanks for life as God grants. Take care. Rod McCune

    #54764
    John iosiphakis
    Participant

    Please what is Low Risk MDS ? What are the Criteria for Low Risk MDS ?

    Thanking you John I

    #54766
    Mary Roth
    Participant

    It was explained to me that “low risk” means your disease is progressing slowly, the abnormal blasts that enter your bloodstream function like normal cells, and the disease is causing only mild to moderate anemia.
    On the other hand, high-risk means your level of blood cells are significantly low and your blast cells don’t develop into functional blood cells. Maybe someone else can help out with the percent of blasts that cause you to be more likely to have AML, or whatever.

Viewing 7 posts - 1 through 7 (of 7 total)

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