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Off revlimid Tp53 mutation

Home Demo forums Patient Message Board Off revlimid Tp53 mutation

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    luke letourneau

    I was on Revlimid for 3 1/2 years then taken off because of tp53 mutation. That was in Sept of 2022.
    Not good candidate for bone marrow transplant. What I don’t understand is why my blood work is doing pretty well for the last 9 months without any medication. I know I should just be thankful but I am curious to why.


    I expect they did a Bone marrow biopsy and noted TP 53 variant. I was diagnosed with TP53 variants (OcT 2022) as well other genetic abnormalities. Currently, on VIDAZA, 5 day injection / 28 day cycle. Complete Cycle 6 this Friday. I suspect it is a residual effect of the Rev. Question is_ how long will this last? Some one posted they had stopped treatment and were doing well with out the medication. Myself, it never occurred to stop an effective treatment. I went to m d Anderson Houston searching for TP 53 Clinical Trail for TP53 ( has poor prognosis). There results ( May 2023 ) showed that VIDAZA was , surprisingly, working very well. So, not eligible for Clinical Trial… At This Time. SO, great news that you are in a steady state of no AML progression.

    luke letourneau

    How are you handling the side effects of the Vidaza?

    Bill Corbin

    I don’t have the TP 53 mutation, but do have Low Risk MDS with TET2 (3 mutations), SRSF2 mutation, and SMC3 mutation. Right now my MDS seems under control with nearly normal CBC’s. I have been on the Vidaza regimen of 28 day cycles with subQ injections on the first 7 business days of each cycle and then 19 days of no treatments. My side effects are fatigue, constipation, soreness and redness at the injection sites, and sometimes nausea. I take Miralax daily at breakfast for the 9 days of the injection period; take an afternoon nap as needed for the fatigue; take 4 mg of Sofran just prior to each injection to prevent nausea (works for me 100%); regular light exercise of golf (2 days per week) or bicycle riding. Soreness lasts for one week after the 7th injection day. I have had 21 cycles of Vidaza beginning December 2021 through June 2023.



    Sounds like Vidaza has worked for you 👏👏👏. Do you walk or ride when playing golf?

    I’ve been seven years treatment free but it looks like Vidaza is on the near horizon. My red and hemoglobin #’s are modestly low but my wbc has long been abysmal and now my platelets are falling. My hematologist suggests Vidaza once my platelets plateau at 100.

    I have 4 mutations, none of those are Tp53 (Axsl1, Idh1, SRSF2, and Jak2).

    I play golf 3 times per week walking. Course is hilly but so far I’ve not had issue. My hematologist is recommending a shorter treatment schedule than normal, Vidazza three days per 28 day cycle. Do you play golf during your week of treatment? If not how long after treatment are you able to hit the links?


    Bill Corbin

    I was referred to Hematolgist/Oncologist in January 2021 due to consistently low RBC, WBC, and Platelets in spite of treatment for anemia. Bone marrow biopsy inconclusive for MDS, but ruled out leukemia and lymphoma. None of the cell lines were critically low so I was followed with quarterly CBC’s. After eight months my granulocytes and ANC dropped to critically low, so I had my second bone marrow biopsy in November 2021. That one was conclusive for MDS; I was started on Vidaza 7 days out of every 28 day cycle on December 6, 2021.

    After five cycles of Vidaza my CBC’s were approaching normal but varied from just within normal to just below normal and have remained that way ever since.

    I play golf Monday and Friday–18 holes each day–and ride in a cart. If the Vidaza treatments do not interfere with tee times, I play golf even during treatments. Usually treatments are given around 2:00, so I can play in the morning of those days.

    Good luck and hope Vidaza works for you as it has for me.

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