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High Risk MDS w/TP53 Mutation – 7 months in

Home Demo forums Patient Message Board High Risk MDS w/TP53 Mutation – 7 months in

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    Sam Zullo


    My mom was diagnosed with MDS with TP53 mutation in early April 2023. She is 73 and already has Multiple myeloma. The myeloma has been under control for a couple of years, but she was categorized as very high risk with her MDS. They estimated 6-9 months lifespan at that time.

    She opted not to go back through stem cell again as she did with the Myeloma…and has been on the cycles of getting shots 7 days in a row every 4 weeks.

    From July – August the injections really seemed to be working. She no longer had to get weekly blood and platelet transfusions…and she seemed to be doing much better energy wise.

    At the beginning of September, she started needing the transfusions again…and it seems to be that she is needing them weekly now for both.

    The doctors have moved her to cycles of 5 weeks and only getting 5 days of shots.

    I know every patient is different, but I can’t get any answer on what this means…I’m assuming it means she is near the end of her time.

    Does anyone have experience with a similar progression? I have 3 young children and want to to the best I can to prepare myself, and them for what is upcoming. I also live a few hours away and try to get there as much as I can…but want to prioritize wherever I can.

    I am not looking for sugar coating..just real thoughts based on any experience…

    Thank you in advance for any thoughts.

    Ashley Moncrief


    Thanks for writing in. The decision to change treatment days and cycle length can be based on a number of reasons such as how your mother is tolerating treatment or how her blood counts are responding. If blood counts go down after treatment and stay down longer than expected, it could be either from the disease itself or from the therapy. If there is concern that it is therapy related, they may suspect she is receiving too much medication which can cause marrow suppression. This is where the bone marrow is unable to produce enough cells but does not necessarily mean the cells it is producing are not healthy. In this case, the doctors may back off therapy a bit. The only way to know for sure what is keeping the counts down is to do another bone marrow biopsy.

    I hope this helps!


    Sam Zullo

    Thank you for the info Ashley. That’s really helpful for understanding. She did have an additional biopsy in September and I believe that is what lead. The decision to move to the cycle changes. I’ll cross my fingers that counts come up a little and she had some more quality time left with us.

    John Kelley

    Hi Sam,
    I am formerly very active 81 year old male. I was diagnosed with exact same symptoms as your mom. I start my third 5 day chemo cycle next week. I’ve had 5 red blood & 2 platelet transfusions so far as my blood counts were horrible. I am on daily antibiotics.
    Does your mother have any other health problems as 6-9 month life expectancy seems a bit pessimistic? I was given around 18-24 months. MDS is just the worst & we have to just try & appreciate each day we continue to have a pulse.


    Yes, I had the same disease (MM) that eventually morphed to TP53 mutation MDS. Myself, I was 52 when MM diagnosis identified (2013)- MM treatment kept disease at bay until reoccurrence in April 2017. Then fortunate to use my own stem cell for transplant. Disease free until Oct 2022 when High Risk MDS identified by bone marrow exam. Unfortunately, a secondary cancer usually is expected after Auto stem cell transplant. You must understand that MDS will eventually turn into AML. There is no mention of treatment drug that patient is on.
    As far as “sugarcoating” – The overall survival rate is very dismal for the TP53 variant. However, follow the treatment advice of the Cancer Care Team.
    The wife and have to make a decision concerning my new course of treatment since clinical lab findings indicate 5 Azacytidine is no longer viable ( this is what occurs). We are scheduled for a bone marrow exam in Houston Med Center( Nov 2023) to provide information to continue with adding a second drug or even a National Clinical Trail.

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