MDS is a bone marrow failure disorder
MDS is a blood cancer
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Viewing 3 posts - 1 through 3 (of 3 total)
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  • in reply to: MDS/MPN overlap #56900
    marilyn
    Participant

    Hi Steve, I have a subset of the mds/mpn overlap specifically mds/mpn-rs-t. I was diagnosed in 2018 at Huntsman Cancer Center in Salt Lake City. I have been on hydroxyurea (mostly to keep my platelet count down) since that time and remain in the watch and wait status. This is a progressive disease but it is also rare and there is not alot of data on it…very frustrating.
    Marilyn

    in reply to: Research Study for MDS Patients #56899
    marilyn
    Participant

    I have a subset of mds/mpn overlap specifically mds/mpn-rs-t. I was diagnosed at Huntsman Cancer Institute in 2018. I dont know if you would be interested in research on my diagnosis

    Marilyn

    in reply to: MDS / MPN RS-T #56711
    marilyn
    Participant

    Hi Jimmy, You are the 1st person I have met with the same diagnosis. I was diagnosed at Huntsman Cancer in Salt Lake City in 2018 when I had a BMB showing mutations of Jak2v617f, sb3b1, and tet2. I also have MGUS. I have since moved to a city in central Oregon and am seeing a hematologist/oncologist here who does not really seem familiar with my diagnosis. I went for a 2nd opinion @ OHSU in Portland (3 1/2 hrs away) who is recommending a 2nd BMB to be done there in the spring. My only symptoms so far are shortness of breath, fatigue, and recently a loss of appetite. I have been on Hydoxyurea since my initial diagnosis that keeps my platelet count normal (it was initially 680) with no side effects to speak of. My most recent blood counts were RBC 3.44 WBC 7.0 platelets 296 MCV 104 MCH36 and low free light chain ratio of .08, lambda 20. I am still in active surveillance mode.
    Marilyn

Viewing 3 posts - 1 through 3 (of 3 total)

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