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My husband was just diagnosed w/MDS

Home forums Patient Message Board My husband was just diagnosed w/MDS

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  • #26960
    cherdoo
    Participant

    After 2 blood tests we got a call from the clinic saying he needed a bone marrow biopsy. We’re waiting on the appointment now. We received a letter describing MDS, and after he read it, all he said was he had 5-12 months. Nothing good from this letter.

    He hasn’t had the marrow biopsy yet, and I’m reading all I can to find some hope. He’s 53, his only sibling is 64, looks like he’s out of luck if it should come to a marrow transplant. He’s uninsured, we both live from my disability, and I’m terrified we won’t be able to afford medicine. He qualifies as indigent at a local hospital, but that only goes so far.

    Please someone, give us some hope. My husband is my world. I need to know what to do to keep him here and healthy.

    #26967
    Site Admin
    Moderator

    Thank you for your post. I know this is a difficult situation for you and I would recommend that your husband go to one of our Centers of Excellence in MDS. Your husband should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment except supportive care like transfusions or epogen (Procrit). Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/.

    • This reply was modified 4 years, 7 months ago by Site Admin.
    #26969
    ej
    Participant

    I too have been recently diagnosed with MDS; I am 52. I have been aggressively pursuing testing and gathering of information from the excellent doctors here in Seattle.

    Cherdoo, there is a wide range of types of MDS, depending on the results of various blood tests and bone marrow biopsy tests. The outcome and treatment depends on the results of the tests and the progression of the MDS. The first thing to rule out is if his MDS is caused by a nutritional deficiency: Vitamin B12, folate, iron, or copper deficiency. These can all be measured by a simple blood test, and are easily fixed with a supplement.

    Median survival according to my oncologist is ~10 years; this means 50% of people diagnosed with MDS will live more than 10 years, 50% will live less than 10 years; this is without treatment. It depends on the type of MDS. Almost certainly your husband has considerably more than a year to live; he and I are relatively young to be diagnosed with MDS, which is actually in our favor when it comes to treatment.

    The type of MDS is determined by several types of blood tests and by the bone marrow biopsy. The biopsy is very important, as it is by far the most accurate way to determine if there is a genetic abnormality and what type of abnormality it is. The type of genetic abnormality will then dictate the prognosis and likely the type of treatment.

    Several types of MDS are considered “indolent”; they take longer to progress to more serious disease. However, for people of our age, ultimately a bone marrow (stem cell) transplant is the only way to live a normal lifespan. If your husband is like me and of an average European descent, there is a good chance that the bone marrow registry will have a match for him, and he would be eligible for an allogenic stem cell transplant. This sort of transplant can actually result in a cure for MDS is more than 50% of cases. The younger we are when we have the transplant the better our chances of survival.

    Another option in early stage MDS disease is enrolling in a clinical trial if you live near a center that has studies ongoing. With early stage disease he and I may not need a standard treatment yet, and may benefit from a trial of a new drug or treatment that shows promise.

    I am currently on an Affordable Care Act health plan through my state exchange and so far they have paid for all my tests in full (a lot of them!); I highly recommend that you enroll immediately if you can.

    Good luck to you both, I hope this helps.

    • This reply was modified 4 years, 7 months ago by ej.
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