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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 6 posts - 1 through 6 (of 6 total)
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  • in reply to: MDS Alternative treatments #44613
    Laraine Beck
    Participant

    FYI Dr. Nimer is not accepting new patients at this time. Disappointing

    in reply to: MDS Alternative treatments #44182
    Laraine Beck
    Participant

    Thank you. This is very helpful. There is a Sylvester Cancer Center in Deerfield Beach (Incidentally on the Aetna Medicare website ALL of the Sylvester Cancer Centers are listed as Centers of Excellence) and I am sure their oncologist will work with Dr. Nimer.

    in reply to: MDS Alternative treatments #44169
    Laraine Beck
    Participant

    MDS Moderator.. Do you know if all of the Sylvester Cancer Center locations (specifically checking on Deerfield Beach which is closer to me) are Centers of Excellence or is it only the one in Miami? I am checking on a new healthcare plan for 2019 that includes all of the Sylvester Cancer Centers. Appreciate any help you can lend me

    in reply to: MDS Alternative treatments #44168
    Laraine Beck
    Participant

    Thank you. None of the Centers of Excellence are covered under my insurance plan. I’ll call on Monday to see hwo much a consultation would cost. Unfortunately, there are no Centers of Excellence in Broward County which creates a separate problem. I wasn’t suggesting abandoning conventional treatment. Just looking for an alternative treatment to support the conventional.

    in reply to: New and Scared #36728
    Laraine Beck
    Participant

    Had a bone marrow biopsy on 6/1. I was scared too. The procedure itself was a piece of cake. It was done with lidocaine and I felt almost nothing. There is a split second during the procedure where a pain shoots down your leg but it wasn’t bad. For me, after the lidocaine wore off, I had a bit of pain but nothing I needed to take meds for. Best of luck.

    in reply to: MDS/MPN "wait&see" #36727
    Laraine Beck
    Participant

    I was just diagnosed on 6/14/18 and was so relieved I didn’t have acute leukemia (family history of it), I didn’t ask any questions. I am also on hydroxyurea and have no idea what comes next. I will look for an MDS Center of Excellence but I am sure my Medicare HMO won’t approve. I can change m insurance though in a few months for next year. Am following your journey

Viewing 6 posts - 1 through 6 (of 6 total)

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