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Should I start Vidaza??I'm scared to upset things.

Home Demo forums Patient Message Board Should I start Vidaza??I'm scared to upset things.

Viewing 3 posts - 1 through 3 (of 3 total)
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  • #6460
    murphy
    Member

    My doctor wants to put me on a study of Vidaza. I’m scared to death!!! Right now I have not transformed and have been diagnosed two years ago with MDS/Rsb. I just keep track of my numbers, have BMT every 4 months, and get a shot to boost my red cells every two weeks. I’m scared that beginning Vidaza will upset everything. Anyone have any advise to share? Tell me what bad things go along with this drug. Please! Thanks

    #6461
    KATHY1
    Member

    Murphy, I hate to be the first person to respond to your request because you will hear from many people who have had much success with vidaza. However, you did ask to hear the down side as well. From what I understand, and I’m sure someone will correct me if I’m wrong, vidaza kills off the cells good and bad obviously lowering all your counts. Which means higher possibility of infection during this time. The hope is that the cells will rebuild with fewer blasts thus increasing the counts.

    In my mothers case she only made it through the first round of vidaza. She got an infection in her lung. Doctors think probably pneumonia. She passed away ten days later. Having said that you should also know my mother never wanted to live like a sick person. Right afer her last vidaza treatment she felt very sick-nausea and such. But when she felt better that same day she went to the local nursery to buy plants-not a good idea. I truly believe had she been more careful she would still be with us today.

    Best of luck with whatever you decide to do.

    Kathy

    #6462
    Terri
    Member

    Murphy, Bob is on his 6th round this time, he did six last year and then stopped for 7 months and the blast started coming back. The doctor now has him more on a mtc every 6 weeks.
    Bob’s counts hold pretty stable but we also have contacted a Nurtritionist who has him on a regimen of Vitamins and supplements to Boost the Immune system and also to help with his counts.

    When we started last week for this round his hgb was 11.3 the reds were 4.82 higher then I thought, wbc 10 and plts 77. Our concern is always the WBC as in Bobs case they escalate when blast start coming back.

    Bob takes an antinausea med before each mornings shots.
    Kathy is Correct as Vidaza is a form of Chemo it does kill good cells and bad in the effort to get the marrow to start producing on its own

    Everyone is different, We have been grateful that so far it is working for Bob. He gets very tired during the week of treatment, but overall he feels pretty well considering this disease.

    Each patient has to weigh the pros and cons. Bob has been tx free since Dec of 2003.

    I wish you well and will add you to our prayers

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