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.

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
  • #54660
    Michael Resman


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

    MDS is taking
    a bite of my life

    So the Captain and I
    for the tick tock
    of time passing


    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.

    Mary Roth

    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!

    Niels Jensen

    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.

    Roderick McCune

    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

    John iosiphakis

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

    Thanking you John I

    Mary Roth

    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)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.



Search Forums

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