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How long can we be on Vidaza.

Home forums Patient Message Board How long can we be on Vidaza.

This topic contains 3 replies, has 4 voices, and was last updated by  debra 2 weeks ago.

Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
    Posts
  • #45156

    Daniel Chaviano
    Participant

    I,m 68 years old, being with MDS for the past 3 years, 2 and haft years on Vidaza, seems working fine , but for the past month my Hemo goes down , ( I only got problems with my Hemoglobin levels no other problems , and barely symptoms ) to the point I needed a Blood Transfusion last month, Vidaza 5 days every 5 weeks , and Haranex injection every week , I saw the Transplant specialist and seems like I want a good candidate, I,m in Miami, Silvester Comprehensive Cancer Center , great doctor , fantastic nurses ,but still wonder how long with hat be, Doctor say for a lifetime , but how long is that period ? Wish you all the best of luck

    #45169

    mdsfound
    Moderator

    Hi Daniel, You are going to an MDS Center of Excellence so you are in good hands. I can connect you with other transplant survivors in case you have any questions regarding the process for support. There are also other treatment options just in case Vidaza isn’t working for you any longer. Email patientliaison@mds-foundation.org.

    • This reply was modified 3 weeks, 1 day ago by  mdsfound.
    #46243

    Bridgette Perkins
    Participant

    Hello.Daniel.Can u email me other options please! bridgettecockrum@gmail.com

    #46284

    debra
    Participant

    I am probably going about this the wrong way but I am exhausted sad and confused so I am going to give this a shot. I apologize if this is infringing on anyone else’s “post” but I could not figure out how to begin my own post. I am writing about my dad. He was diagnosed 18 years ago with MDS low risk. Has done really well until about 3 years ago and is now transfusion dependent. He is 82 years old and getting 2 units every other week and even then hemoglobin hovers around 6 (at best). We were told today he has shifted to high risk and they want to do another BMB (last one in 2011) and possible start him on Vidaza. I absolutely cannot see putting this man through what appears to be an incredibly time consuming, physically brutal regimen at his age. And he is not in great health otherwise. I need honest opinions. I read horror stories where people say if they had known how rough it would be they would never have let their loved one go through it. They would have just gone for quality of life over quantity. My dad highly values my opinion and at this point I do not know how to advise him. Thank you to anyone who can help.

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