Myelodysplastic Syndrome (MDS) Support

chappelljnm
chappelljnm CSN Member Posts: 4 *
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I'm looking for anyone who has or knows someone who has MDS. Doctors diagnosed my dad with MDS in 2024. I haven't found much yet in terms of support for MDS patients and their families, and am very interested in connecting so we can share what we find out and support each other. Please let me know if you're interested.

Comments

  • po18guy
    po18guy CSN Member Posts: 1,535 Member
    #2

    Sorry to hear this. I was diagnosed with MDS in 2015. It is a variation known as 20q deletion, a genetic marker. MDS, as with all myeloid cancers, can run the gamut from mild to wild. Mine was low-intermediate risk, bit was 23% of may marrow when diagnosed. It rtook some time to eradicate it, but no sign of it for 8 years now.

  • chappelljnm
    chappelljnm CSN Member Posts: 4 *
    #3
    https://csn.cancer.org/discussion/comment/1723119#Comment_1723119

    Wow. So it sounds like genetics plays more of a role in contracting MDS. I initially thought it was more environmental, but it's at least good to know that genetics is a factor. How are you doing now?

  • po18guy
    po18guy CSN Member Posts: 1,535 Member
    edited June 9 #4

    Well, it may or may not have been genetics, as I had received something like 18 different anti-cancer drugs to combat two variations of T-Cell Lymphoma, which I had at the same time. At that point, my marrow was pretty much destroyed. I eventually had a marrow transplant which got rid of all three. You might look for support in various leukemia organizations, as it is a myeloid cancer which can progress to acute myeloid leukemia. MDS is not nearly as well-known as the various leukemias, and it off the radar at many facilities.

  • po18guy
    po18guy CSN Member Posts: 1,535 Member
    #5

    Here is a reference page from Fred Hutchinson Cancer Center. Scroll down at it has links to MDS support organzations and groups.

    https://www.fredhutch.org/en/diseases/myelodysplastic-syndrome/facts-resources.html

  • chappelljnm
    chappelljnm CSN Member Posts: 4 *
    #6
    https://csn.cancer.org/discussion/comment/1723121#Comment_1723121

    I ran into exactly what you're talking about: a lot of medical people here at home (Albuquerque) don't know about MDS. Wow, though - to get MDS because of your T-Cell Lymphoma treatment. Due to distance, I'm limited in what I can do, but I'd be glad to offer whatever support I can - even if it's just to talk.

    Thank you for the Fred Hutchinson Center Link - I owe you.

  • po18guy
    po18guy CSN Member Posts: 1,535 Member
    #7

    You are very kind. All of this is fading into the rear view mirror, but I am well aware of the worry associated with any cancer diagnosis. Regarding your dad, please consider a pilgrimage to MD Anderson in Houston for a second opinion. Second opinions save lives. MD Anderson is one of the best centers in the world, being a research center Which conducts clinical trials and possesses the leading edge in cancer therapy. Not "that" far away, but I think the consult would be worth it if possible, even for the confidence it can inspire. At a minimum, I would hope that your dad's team is consulting with them regarding treatment.

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