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Second Opinions

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This topic contains 2 replies, has 3 voices, and was last updated by  Karen Warwick 1 week, 4 days ago.

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  • #44580

    Shelley Frady
    Participant

    My mom was diagnosed with very high risk MDS. I mentioned the Centers of Excellence to her and today she mentioned she may want to make an appointment at either Vanderbilt or Emory.

    From what I have read there isn’t many options of treatment and Vidaza seems to actually be the only one I am seeing. She doesn’t qualify for bone marrow transplant due to other health issues.

    Not trying to sound negative but what would be the benefit of a second opinion?

    #44581

    Meredith Smithson
    Participant

    Hi Shelley:
    My husband was diagnosed with MDS a year ago. However, the BMB was inconclusive and for some reason the cytogenetic results were not done. A lymph node aspiration was done but showed nothing. We were watching and waiting for 8 months and meanwhile my husband was getting sicker, with his CBC deteriorating, especially the WBCs at 1.0 and neutrophils around 200. We sought out a second opinion in October at a Center of Excellence where another BMB was done and a bigger workup including a PET scan, lots and lots of immunological testing and labs, labs, labs. It is looking more like lymphoma, and perhaps a mild MDS. We went to a Center of Excellence several hours away and they were kind enough to refer him to colleagues closer to us to do a lymph node dissection to hopefully get the correct dx. The MD at the Center of Excellence brought all the pieces together, and the communication was wonderful. He made sure the services were coordinated, that we were informed and that we understood the plan and options. We are still in the middle of it, but I feel confident that we are moving in the right direction. He may not end up having different treatment, but as it was we were not getting any treatment without a working diagnosis. All in all, the second opinion made a huge difference in our acceptance of the situation and feeling like we are making the best decisions with all the information at hand. I’m really glad we were encouraged to get a second option. Best wishes to you both.

    #44587

    Karen Warwick
    Participant

    I’m looking for anyone who had a parasitic lymes disease infection….prior to the onset of MDS…you may want to find out what else could be causing the symptoms. I think I read a second BMB would be done. Something in bone Morrow needs to be fluid. If its dry sample they may not get an accurate result.

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