MDS is a bone marrow failure disorder
MDS is a blood cancer
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  • #57212
    Jessica Hernandez

    Hello all,

    My mother in law was diagnosed back in Oct 2020 with “low risk” MDS. She went in for her normal annual blood work with her primary when she was told that her hemoglobin was a little over a 5. This was the first of her many transfusions. She was sent to see an oncologist who took a bone marrow biopsy and diagnosed her with MDS del5q.

    Fast forward a little over a year later, she is currently on weekly aranesp + neupogen shots (goes every Tuesday & Thursday), one b12 shot every three weeks and gets blood work drawn every two weeks. It seems that her transfusions are lasting about three weeks before she needs to go in for another pint.

    Should we be concerned with the amount of transfusions she is receiving in terms of over abundance of iron?
    Is it normal practice to have another bone marrow biopsy to see if the disease has progressed?

    The next step is the Revlimid pill which is in the process of being approved. I am curious to know if she is still considered a low-risk candidate considering her dependency on blood transfusions, and the need for weekly aranesp + neupogen shots. When will we know if or when the disease has progressed? Thank you all for your help!!!


    buddy west

    I am also low risk MDS, on wait and see, do you need to do BMB each year and does Medicare pay?

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