MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

MDS turned AML with TP53 mutation

Home forums Patient Message Board MDS turned AML with TP53 mutation

This topic contains 7 replies, has 7 voices, and was last updated by  Judith Barnes 4 days, 11 hours ago.

Viewing 8 posts - 1 through 8 (of 8 total)
  • Author
    Posts
  • #48803

    Tara Swanson
    Participant

    My husband went into the hospital on January 18, 2019 for low hemoglobin and shortness of breath. We assumed it was a crohn’s attack since he had been battling that for 4 years. He was diagnosed with MDS on January 29, 2019. He turned 53 the next day.
    The oncologist told us that he contracted MDS from mercaptapurine that he took for his crohn’s disease. She said he was eligible for a stem cell transplant and given his age could very possibly be cured and live a long life. We were so relieved to hear that as our son was only 4 years old. The hospital we were at did not give stem cell transplants so we had to apply for out-of-network status to get to the med center. Chris was put on vidaza for four months and received blood and platelet transfusions every 2 days. He tolerated the vidaza very well and drove himself to and from appointments for months. In April we finally got to the med center and the new oncologist informed us that she reviewed his labs and file from the previous hospital and as it turns out he had extremely high risk AML with a TP53 mutation. His blasts were 18%. She started him on decitabine and began the donor match process. He started to receive blood and platelets almost daily at this point.
    After two rounds of decitabine with venclexta his next bone marrow biopsy showed disease progression and his blasts were up to 33%. The dr was concerned that he would not achieve remission.
    She admitted him to the hospital on June 3 to begin a round of vyxeous. This chemo ravaged his body and made him extremely weak. He required daily transfusions, sometimes twice a day. He got neutropenic colotis and had clots of blood and mucus forming in his esophagus, making it hard to eat and risking infection. He got a mild case of pneumonia from the food stuck in his throat. Another bone marrow biopsy showed 8% blasts. Although the number was lower, he still did not have remission or chance for transplant.
    The doctor started Chris on a cocktail of low dose chemo followed by high dose aggressive chemo. She said we had a 30% chance of it working. Chris was down to 130 lbs., became incontinent and had gushing nose bleeds.
    The final biopsy on July 24 showed the disease was still very present with 38% blasts. I finally took my husband home from the hospital at 3:00 pm on July 25. He died at 9:30 pm on July 26.

    #48804

    Amy Clark
    Participant

    Tara,
    I am so sorry to hear of your husband’s passing. This is a terrible disease and what happened to him was truly tragic for him, you and your son. I am so sorry. Thank you for sharing his story. No doubt it will help someone else going through this disease. I will pray you are given the peace and strength for the days ahead. God bless you, Amy

    #48807

    Kathy Stermer
    Participant

    Tara, my heart goes out to you and your son and what a difficult journey for you all. There are no guarantees in healthcare but this disease which I also suffer from can so ravage the life of the one affected and those they love. Wish none of us had to do this at all. Holding you and your family in my heart. Thank you for sharing your story.

    #48844

    Amy C
    Participant

    Sorry for your loss Tara, my Father has the same, MDS with TP 53 and turned to AML. He just started Venclexa.
    I am trying to stay positive with this drug, hoping for good results. Everyone is different I suppose. I hope that you have the comfort of friends and family around you. And wish you peace.
    Amy

    #48845

    Rita Knopick
    Participant

    So very sorry to hear this sad new Tara. My husband is going through this rotten disease also and is in the hospital right now with a stomach bleed. We are living our lives one day at a time. Sending prayers for comfort for you and your son. God Bless you. Rita

    #48847

    Tara Swanson
    Participant

    Thank all of you for your kind words and prayers. Chris’ disease was treatment induced and therefore extremely aggressive and not at all the norm for AML. I am praying for all the patients and families affected by this awful disease. God Bless.

    #48849

    Sally Smith
    Participant

    Please accept my deepest sympathy.

    #48853

    Judith Barnes
    Participant

    Tara, that is such sad news. Thanks for sharing. Wishing you peace,
    Judy

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

Register for an account, or login to post to our message boards. Click here.

You must be logged in to reply to this topic.


Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert