MDS is a bone marrow failure disorder
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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 4 posts - 1 through 4 (of 4 total)
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  • in reply to: New to the Foundation at 79 years old. #55036
    ROBERT HOGAN
    Participant

    I was treated with Revlimid 5mg and went 2+ years without a transfusion. The efficacy of Revlimid is at max 2 years and during that time I only had one transfusion and that was at the beginning. True it is very expensive but in my opinion it gave me 2+ years of normalcy. Unfortunately I am now back being transfusion dependent as nothing we have tried ( Procrit & Inqovi) did much good. I hope this is of some help. I was diagnosed in 2015 and didn’t start any treatment until 2017, like you I am 79 years old. I’m hoping for something new to pop up for treating of this specific strain of MDS.

    in reply to: questions about new q5 detetion diagnosis #55015
    ROBERT HOGAN
    Participant

    I also had a reaction from Revilimid 10mg, my hematologist decided to try dropping to 5mg and that worked very well for 2 years then of course it ran its course and ceased to function. I am now seeking something new that may help but it appears there is nothing in the offing that is specifically designed for just Deletion 5Q MDS.

    in reply to: New to the Foundation at 79 years old. #54982
    ROBERT HOGAN
    Participant

    Tom:
    I to had a reaction to the initial Revlimid, and my doctor and I decided to try a lighter dosage. We dropped from 10mg to 5 and it did it’s job for nearly 2 years with minimal problems. That may be an option for you. Like you I recently had a BMB #5 with very minimal change from the original. Having been through all the available medications, I am now in a wait and see mode for something new.

    in reply to: New to the Foundation at 79 years old. #54981
    ROBERT HOGAN
    Participant

    Kathleen:

    I wish you the best with your transplant therapy. Although I am in relatively good health other than MDS I doubt the government would be willing to foot the bill for me going to Moffitt. At this point I just have to hope something new pops up in the near future.

Viewing 4 posts - 1 through 4 (of 4 total)

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