MDS is a bone marrow failure disorder

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Confused MDS diagnosis

HomeForumsPatient Message BoardConfused MDS diagnosis

This topic contains 5 replies, has 4 voices, and was last updated by  rft1111 1 week, 2 days ago.

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #32187

    Sharon Rice
    Participant

    My dad has been diagnosed with high risk MDS, he is not fit enough for chemo and has been told by the Haemotologist he has less than 12 months to live! My dads GP does not believe this diagnosis and has now said the low blood results are caused by long term Aspirin use! Has anyone else come across this? We feel really confused now!

    #32188

    Janet DelCiello
    Participant

    For an accurate diagnosis of MDS it would be important to have a bone marrow biopsy. The hematologist would then create slides and have them analyzed by a hematopathologist at a specialized laboratory which is skilled at identifying signs of MDS. Long term use of aspirin can affect platelet counts, but there is more involved in coming to a diagnosis of MDS. Hope this helps. Good luck.

    #32189

    Elizabeth Hussey
    Participant

    I am new to MDS. Some of my doctors want bone marrow transplant, some say so dangerous for me. So I have some big decisions and I need to hear from you all out there, what has MDS done to your life. Sure has a made a mess in my life so far. So what do you do out there? What did MDS do to your body, bruising, fatigue, bone pain, etc?

    #32190

    rft1111
    Participant

    I don’t see how a “true” MDS diagnosis can be made without a bone marrow biopsy to confirm it. How old is your dad? That could make a difference in the doctor’s suggestion. I say suggestion because that is what it is. Do not be afraid to question the doctors at every step.

    #32191

    Sharon Rice
    Participant

    My Dad is 65, he has had a bone marrow biopsy done which shows Myelodysplasia.
    Now his GP has said the low blood counts are caused by long term aspirin, this has got all our hopes up, we are now really confused.

    #32215

    rft1111
    Participant

    Well, 65 isn’t old. I’ll be that in October. The low hemoglobin could be caused by bleeding from long-term aspirin usage. I have to wonder about the hematologist. I was diagnosed in January, 2016 with MDS shortly after a stay in the hospital because of extremely low hemoglobin numbers. I wasn’t in good health then and could be considered unfit. I really wonder why your doctor rules out chemo right off the bat. There are drugs that may help boost hemoglobin counts that can be used as a first step. Blood transfusion can help too. I assume your father no longer takes aspirin, if he his truly bleeding. My cardiologist kept me on aspirin as long as my platelets stayed about 40 and my hemoglobin was ranging from high 6’s to low 7’s. I went through a regimen of Aranesp injections to boost red cells. It didn’t work. I went through 6 cycles of chemo using Vidaza. It didn’t work and neither did Revlimid or Decitibine. I have been getting transfusions seemingly forever now. I am waiting for a stem cell transplant but have had infection issues that have delayed that. Last December, when deciding that what my hematologist was doing wast working, I went to a tertiary specialist who focuses on the bone marrow and transplants. She told me that I might not see the end of this year because of the progression of my disease.

    To me it seems your hematologist has given up and you need to get your father to a specialist in this disease. I wouldn’t give up yet. The longer it progresses the worse it could get.

    • This reply was modified 1 week, 2 days ago by  .
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