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MDS High Risk

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Viewing 8 posts - 1 through 8 (of 8 total)
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    Kathleen Till

    I was diagnosed with the above on 2nd April and getting my third chemo next Monday.

    Preparing for a Bone Marrow transplant – anyone else had this or going through this.

    I have the trisomy 8 chromosome.



    Kevin Dugan

    NO I have not, but will be thinking of you and praying all goes well. Best wishes, Kevin

    Tom Nelson

    4 year MDS del5q patient. Started with Revlimed, then switched to bi weekly Aranesp. HGB went from 10+ to now 8.2 maintenance with the help of weekly Granix. February BMB showed still del5q, but now also 8+ or 3 legged Chromosome 8, additional variant.. Assume this is what is meant by Trisomy 8. lifestyle the same as before, Work in spurts and naps. Doc thinks the 8+ is/has caused the Hgb drop. Trisomy 8 seems to be a newer variant.

    Kathleen Till

    Thank you. I thought HGB levels should be higher. Mine are 10 and it says low.



    Hbg “normal” is minimum 12.2. Some labs have “normal” at 11.4. It just depends on the lab processing your blood test. So yes 10 is low, no matter what.



    In 2000 I was diagnosed with a Myeloproliferative Neoplasm called Essential Thrombocythemia, basically my platelets over proliferated. I knew their might come a day where my bone marrow would fail but I lasted longer than anyone expected. I was on Hydroxyurea for 13 years until my platelets stabilized. For five years I was treatment free until 2018. A routine blood test showed blasts. I was diagnosed with Low Risk MDS, watch and wait.

    In Jan 2020, I sought a second opinion. A repeat marrow biopsy showed progression of disease with 10% blasts, ALIP 10%, del 5q, 44XX, -3, t(3:21), dr21 and NGS showing JAK V617F (41% VAF) and two TP53 mutations.

    I was started on Vidaza and Venclexta and continued treatment for six months. On August 1, 2020, I entered the hospital and on August 6th, 2020 I had a transplant. I am now just a bit over one year post transplant with no sign of disease and zero genetic mutations.

    John Bradley

    Congratulations, that is great news.


    Thanks, John!
    I did really well for a year but as they weaned me off of the immunosuppressant meds, I got graft vs host disease so I am battling that right now.

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