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end stage MDS

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  • #2728
    Hilda
    Member

    My mother-in-law has been diagnosed with MDS for nearly 5 years. She is 81, and so has not been a candidate for anything but supportive care. She’s been getting transfusions and Procrit injections. She’s currently getting transfusions approximately every two weeks.
    She came out to visit us at Christmas, and we hadn’t seen her since May. She has lost considerable weight, down to 90 lbs, and was in a lot of pain while. I called her doctor at home and got Darvon for her until she returned. She has since been put on Duragesic along with Darvon which is not giving her adequate pain relief. There is the question of whether this has converted to AML.
    What I want to know, is whether this pain could just be due to end stage MDS, and what we can expect. She has been resistant to knowing specifics before, with an exceptional fear of cancer having lost her mother and sibling to that disease.
    Now we are waiting for her to have a CT scan, ordered by her hematologist. Personally I don’t think calling it something else is going to change the course of treatment given her frailty and age.
    I just want to have an idea what to expect, and be able to help her in any way we can. I appreciate any information anyone has acquired in dealing with this.
    Thanks in advance,
    Hilda

    #2729
    Terri
    Member

    Hilda I am sorry you and your family are going through this, I am sure you will find some answers here. My husband is 59 and he has his aches and pains but Don’t really think they are so related to the MDS. He has been transfusion free for over a year.
    Prayers are with you

    #2730
    April
    Member

    Hi Hilda and welcome to the board. My mom-in-law’s situation sounds about the same as yours. Mom is 68 years old and has had MDS for 3-5 years. We found out at the end of Sept that she transformed into AML. She has been having some pain in her joints and they gave her darvon also. But it got to the point to where it wasn’t helping anymore. She ended up with some major back pain so they gave her some pain meds and that made it a little better. We had to take her to the hosp on 12/23 and they finally did an MRI of her back and stated that she had Celluits. But she has been battling a fever and stuff since the beginning of December. I really don’t know if you could consider the pain as the end stages. Everyone is totally different when it comes to this, which is really crazy.

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