MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

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.

Vidaza induced remission…stop Vidaza and watch?

Home forums Patient Message Board Vidaza induced remission…stop Vidaza and watch?

Tagged: 

Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
    Posts
  • #52392
    Kathie Wolf
    Participant

    My husband is 73 and was diagnosed with very low risk MDS in 2017, although his wbcs had been low since 2014 with a negative bone marrow. After watching, then a year of Procrit he started Vidaza a year ago and for the last five months has had normal labs. His oncologist is offering a “vacation from Vidaza” with monthly labs. She has patients 2 years out without relapse. Has anyone had experience with this? His oncologist says there’s no right or wrong answer in stopping or continuing…

    #52439
    Site Admin
    Moderator

    Hi Kathie, Thank you for posting. I know this is a difficult situation for you and your husband and I would recommend that you seek a second opinion from one of our Centers of Excellence in MDS. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/.

    #52448
    Kathie Wolf
    Participant

    Thanks. Our oncologist through Kaiser in California trained at Stanford and is well connected to them. Would all centers have similar recommendations if we asked for a second option from another Center?

    #52554
    Lee Warner
    Participant

    Hello Kathie,
    We are in a similar situation. My husband’s MDS (5q deletion) was diagnosed early 2018. Procrit kept hemoglobin at mid-10s for 67 weekly injections. Revlimid caused severe rash, stopped after ten days. Vidaza, 7 days on then 21 days off. since late 2019. Hemoglobin hovers in the low 12s. He his exhausted, winded, fatigued constantly. Never has energy at all.

    The oncologist says Vidaza may keep him out of the hospital for several months or for “years”. Says he has no idea how long it can last… everyone is different he says. The oncologist has not mentioned a “vacation” from Vidaza, but we are wondering if that might be possible. Or if the 7 day/ 21 day schedule will keep him alive for several years. I don’t like the “everyone is different” answer, but he says that’s all he has, and that transfusions are the next step when Vidaza fails. He says it will fail at some point.

    We’re hoping for luspatercept or…….what? We don’t really know what to think. I see the Centers of Excellence link above and will look at it. Much hope for your husband – MDS is a difficult disease.

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

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert