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MDS with TP53 Mutation?

Home forums Patient Message Board MDS with TP53 Mutation?

This topic contains 9 replies, has 6 voices, and was last updated by  Denise Fowkes 4 days, 2 hours ago.

Viewing 10 posts - 1 through 10 (of 10 total)
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  • #46774

    Amy C
    Participant

    Hello- does anyone have any feedback about MDS with a TP53 mutation? I know it is high risk. The overall survival rate is not promising 8-14 months if I read that right. Has anyone had any other longer success with treating this (themselves or loved one?) asking for my Father who was diagnosed last July.
    He is being treated with Vidaza and Neupogen.
    Thanks!

    #46821

    Terri Erdman
    Participant

    Hi Amy,
    Your father was diagnosed before my husband but here is his info.

    My husband is 58 and diagnosed with high grade MDS with extra blast and TP53 mutations on January 10, 2019. He was very active and in great shaped prior to diagnosis. He had 2 courses of decitabine. He continued to exercise and function normally during treatment. We even took our RV from WI to Louisiana between treatments!! He tolerated this drug quite well. No side effect, kept his hair and blasts dropped from 9% to less than 1%.

    He received HSCT from our son on April 24th. He has had significant GI effects from conditioning, transplant and anti GVHD drugs. However, those seem to have calmed down. He is at Day +36, he has been home now for a couple of weeks. His bone marrow biopsy, taken last week, showed no blasts and all blood counts are either in normal range or trending towards normal. His medical team is very happy with results.

    Right now his biggest issues are staying hydrated and fatigue. He has a lot of GI issues. He lost 15 lbs since the transplant. We know he has a long way to go.

    Don’t get hung up on the numbers. Find an oncologist you trust, read as much of you can and make a leap of faith. This therapy is not easy.

    #46824

    Amy C
    Participant

    Thanks Terri
    Believe it or not my mother had a bone marrow transplant for AML 5 years ago, she’s doing great now. Some gvhd too.
    My Father with MDS is not a good candidate, maybe due to age. I wish your husband well, I know the Moffitt center is Tampa , FL. Is doing great things MDS TP53.
    Amy

    #46897

    Denise Fowkes
    Participant

    My husband is high risk with blasts, and the TP53 mutation, has anyone in here responded to vidaza ?

    #48718

    Amy C
    Participant

    Denise- I did not see this message. My Dad responded to vidaza for about 9 months- same disease as your husband and tp 53. He is now not really well enough to take it, oncologist has stopped it and he has been getting blood transfusions, I am afraid those are also starting not to help his platelet levels and this is not good.
    How is your husband now?
    Amy

    #48751

    Chelsea Clark
    Participant

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    #48756

    herb
    Participant

    I was diagnosed with MDS along with TP53 mutation about 2 months ago. I’m considered high risk with life expectancy of 8 months. Having Decitabine chemo treatment in hopes of getting MDS into remission so I can undergo stem cell transplant. Docs have not been optimistic (40% chance of remission then 20% stem cell survival odds). Hopeful I can beat the odds.

    #48843

    Amy C
    Participant

    Herb, good luck- I hope you get in to remission, the bone marrow (stem) transplant can work!
    My father just started a chemo pill called Venclexa, I hope he has good results from it, because his
    blast cells rose and he is now in AML Leukemia. Stay positive, drink papaya smoothies and protein shakes, tons of water. Prayers up!

    #48854

    Judith Barnes
    Participant

    I just completed my first 7 days of Vidaza, treatment-related MDS (from chemo for breast cancer), yes to TP53 but no excess blasts (bad news, good news). I ignore the survival stats as they don’t apply to me in particular. Each of us is unique. I’m too old (75) for a stem-cell transplant so I just have to hope for success with this treatment. Hang in there!

    #48857

    Denise Fowkes
    Participant

    Hi Amy my husband starts injection today, he had 2 courses of intensive chemo but didn’t work, fingers crossed this Will do something.

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