MDS is a bone marrow failure disorder
MDS is a blood cancer
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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.

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Viewing 4 posts - 1 through 4 (of 4 total)
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  • in reply to: Decidibine Treatment #53972
    Kathy Brown
    Participant

    My husband has been getting chemotherapy with Decitibine since May 2020. He has weakness, tiredness, fatigue and shortness of breath all the time. He has absolutely no quality of life and especially now because of COVID. His labs have increased but are still low and he hasn’t had a blood transfusion since July 2020. It took almost 6-7 months before his labs went up. We both just got our 1st dose of the Moderna COVID vaccine and will get the 2nd dose on Feb 18th. He states that but for COVID he feels he could make his quality of life much better and would feel more comfortable going out and about and being around people even with a mask, which we will continue to wear until whenever. His Oncologist cut him back from 5 days of chemotherapy with Decitibine to 3 days and his labs are all much better. She felt 5 days of Decitibine chemotherapy was too much for him.

    in reply to: High Grade MDS with 2 genetic mutations #53971
    Kathy Brown
    Participant

    Pat, he has NOT had any mini strokes. This was confirmed by his primary care doctor.

    in reply to: COVID MDS #53970
    Kathy Brown
    Participant

    My husband has high grade MDS and his Oncologist wanted him to have the COVID vaccine because the vaccine does NOT have a live virus agent in it. We are both over 65 and got our 1st does of the Moderna vaccine 1 1/2 weeks ago and have not had even a single effect from it. Our second dose of the vaccine is scheduled.

    in reply to: Decitibine #53969
    Kathy Brown
    Participant

    Rita, thank you for responding and sharing about your husband. My husband was given 12-18 months to live when diagnosed in May 2020. We’re now 8 months into this and he hasn’t had a blood transfusion since July 2020 and are told by his Oncologist that he’s currently “holding his own”. I don’t know what that means other than he’s not going “downhill” yet. He was told he would eventually have AML. I do see that high grade MDS has a median lifespan of 2.2 years. The thing that concerns me is the fact that he sleep most of the day and all night and has extreme fatigue and weakness. He also have severe headaches and severe joint pain and spine pain. He is 69 and walks and shuffles along due to weakness, fatigue and pain, when he walks, like a 90 year old man. I was just wondering if anyone else on Decitibine(Dacogen) with high grade MDS and also 2 gene mutations has any of my husbands symptoms and being told they’re holding their own. This is so stressful and hard to watch.

Viewing 4 posts - 1 through 4 (of 4 total)

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