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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  • in reply to: Choosing no meds; only transfusions #58274
    Katherine Quesada
    Participant

    Hello I’m caretakerfor my mom. She refused oral chemo treatment. She is 82 years old and never had any serious health issues up until this. She probably had it a long time as shes started sleeping a lot and losing weight. In July of 2021 I took her kicking and complaining to get a physical and the rest is history. Started out with transfusions every 2 to 3 weeks in the beginning of like september and now bi-weekly. She gets weekly pro-crit shots. She has had two bouts with cellulitus infections and the last infection they could not figure where it came from. She been in the hospital twice for infections and once treated at home with antibiotics. She was officially diagnosed in January’s 2022 with MDS 5QMinus. I am scared to accept and continue to pray for an extension of her expiration date so to speak. I love my mom and it’s hard to watch her struggle and deteriorate. She has bone pain and we just try and keep her comfortable.

    Today after being home from hospital two weeks it appears as though her infection is returning. She’s had low grade fevers since yesterday. It like she just needs to stay on antibiotics to stay healthy. I believe she’s getting closer to the end. Her blood cts were decent best they’ve been but yet she’s exhausted.

    We got 3 opinions and all suggested same treatment. Even with chemo her life would be extended 2 or 3 months. I am so sad, thought she’d live into her 90’s at least. She was exposed to radiation in New Mexico growing up in the 40’s and 50’s there. She also used round up a lot and she kept it in her washroom? You know we try to find a reason for these things as if it will help soften the blow? Prayers to all of you. Prayers for miracle healing!

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