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Life expectancy after all treatments are stopped. Diagnosed in 2018

Home Demo forums Patient Message Board Life expectancy after all treatments are stopped. Diagnosed in 2018

Viewing 6 posts - 1 through 6 (of 6 total)
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    Jackie Merson

    My husband has stopped all treatments and is in hospice care at home now. he is 84 years old other than the MDS. He’s in very good health. He’s very alert still sits up and eats and drinks. He is sleeping more and shortness of breath has worsened. The doctor had given him three days to two weeks now we are on week four. Since he’s not getting any more transfusions, what is his chances of getting leukemia and what can we expect as far as life expectancy?

    Ashley Moncrief

    Hi Jackie,

    Thanks for writing in! As far as the progression to leukemia, the current thought is that about 30% of those with MDS will transition to acute myeloid leukemia. Since he is in hospice care and is no longer having tests like bone marrow biopsies, you likely will not be able to tell if he has progressed. The risk of progression and life expectancy really depends on several things such as the sub-type of MDS your husband has, his risk score, and current lab values as well as the lab values when he stopped treatment.

    What I can tell you is that no matter the number the physician gives you, it is an educated estimate. No one can guarantee any set amount of time. I think that is one of the hardest parts with hospice care. You know what the ending will look like, but no one can tell you exactly how long it will take to get there. What I would recommend is to talk to the hospice team for some input as they see him on a routine basis and may have better insight.

    I’m so sorry you are going through this right now. Our thoughts are with you and your family.


    Robert Sepe

    Jackie, my well wishesn for your husband …. read my post under “Questions for Doctors” as it may provide useful information which you can act on now, but quickly.


    Jackie: prayers for you and your husband. I know at some point in time, when treatments are no longer effective, we will make these decisions. I am not certain even DRs know the answer to your question. Peace to both of you.

    Doreen Forrest

    Jackie: prayers for you and our family. My husband was diagnosed in May 2023 with intermediate risk MDS. He did not do any chemo. He became blood & platelet transfusion dependent in Feb 2024. He had his last transfusion on Mar 22 and died on Mar 27. He too was alert, eating, drinking and socializing with family until the last 5 hours. His breathing did become difficult, but was helped with oxygen. Hospice gave me no indication how long he had. Fortunately, I had kept track of his numbers since the beginning and had a clear idea of how long it would take him to decline after ending transfusions. This gave me time to call in family. They spent a full last day together going through scrapbooks and playing dominoes and they were there when he died the following morning.
    I am grateful that his suffering was short. Good luck.

    Lesley Duke

    A very beautiful last day. Thank you for sharing. My dad also died shortly after (within 24 hours) of stopping treatments.

    • This reply was modified 1 week, 4 days ago by Lesley Duke.
    • This reply was modified 1 week, 4 days ago by Lesley Duke.
Viewing 6 posts - 1 through 6 (of 6 total)

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