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Newly Diagnosed High Risk MDS

Home Demo forums Patient Message Board Newly Diagnosed High Risk MDS

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  • #58847
    bexar2120
    Participant

    Greetings To ALL:

    The When IS NOW! So, dx’ed with Plasma Cell Myeloma Aug 2013 and had crainiotomy / radiological treatment / chemotherapy standard care of treatment. I am fortunate to reside in large metropolitian area with excellent medical facilities. While under medical monitoring/surveillance, the myeloma reemerged early 2017. Fortunately, my bone marrow biopsy showed my stem cells were suitable for autologous Stem Cell Transplant, which occurred April 2017. Been disease free until NOW! The caveat concerning ASCT was the Risk of developing Secondary Cancer

    Well , I have been dutiful in attending my medical appointments to ascertain When IS NOW! Early this year, my Hgb/Hct and Red Blood cell counts started to fall. Continuing checkups showed same decreases which led to further biochemical testing for the anemia; those results showed no biological explaination for anemia.

    Now, mid October 2022 had bone marrow biopsy performed and waited for up to 2 weeks for test results. Testing included peripheral blood smear, bone marrow smear, flow cytometric immunophenotyping, fluoroescence in situ hybridization ( FISH), cytogenetics study and most importantly – – Next Generation Sequencing for myeloid malignancies.

    So, ofcourse, my Hem/ONC provider informs me that using the IPSS-R system I score a High Risk 6. I have a complex karotype, TP53 variant (2 in fact), circulating blasts and Hgb of 8.1 g/dl.
    Well, this is why we undergo monitoring to catch disease in early stages.

    I have 2nd opinion appointments 1st and 2nd of December. One is nationally recognied BMT clinic and other is MDSF Center of Excellence partner. The treatment options all head in direction of HSCT; I am leary of using another ( matched) persons stem cells. I will state that I am a Medical Lab Scientist, so , I understand all the lab reports and diagnoses and treatment options and side effects.

    SO, a question to the membership in this Forum: Quality of Life is important for my everyday living. The treatment options all have serious side effects and making it to a successful HSCT and life afterwards may have its complications.
    Patients and Caregiver’s, what has been your experience?

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