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.

Revlimidl

Home forums Patient Message Board Revlimidl

This topic contains 4 replies, has 4 voices, and was last updated by  Andrea Sileo 4 weeks, 1 day ago.

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
    Posts
  • #46279

    Roy Powell
    Participant

    Revlimid:
    Taking this, which is the gold standard for low risk MDS 5q del., can be started at 10mg. But my experience is that your levels will drop and must then go back to 5 mg. Then your levels will improve considerably. This is what happened to me and have stayed at 5mg for about a year. Some fluctuation but not much in the levels…
    Roy
    82 yrs.

    #46490

    Andrea Sileo
    Participant

    Hi Roy,

    My mom was diagnosed with MDS 5q del recently. She has been on Revlimid 10mg for two weeks now. Her hemoglobin was 7.9 last week and down to 7.3 this week. How long does it take for the medicine to kick in?

    Best Regards
    Andrea

    #46492

    Kathy Stermer
    Participant

    My experience was that after a year of taking Revlimid my counts never did change much and after 8 months and multiple adjustments in dose ended up needing transfusions almost weekly so taken off and started on Azacitidine which I’ve just finished my first week. I was so hopeful but my anc continued low the whole time hence the dose adjustments. There are so many variables to this disease and everyone’s body reacts differently to drugs that it’s impossible to predict a time other than going by the average for “most” patients. Good luck to your mom and hope it continues and is a successful treatment.

    #46544

    PATRICK CAMMARANO
    Participant

    Andrea : I am 81 and have started my 13 year on Revlimid no side affects. It took four mounts to work. I have been leading a normal life ever since. I have 20q del. I have only one question regarding Revlimid what are your blast? My blast have been a constant 2. A doctor who has worked with Revlimid for years told me You can increase the dose as high as you want as long as the blast remain under 5. This doctor feels it stops working if your blast go higher 5. I hope this helps a little bit.

    PATC

    #46571

    Andrea Sileo
    Participant

    Hi Patrick,

    Thank you for your response. So happy to hear that you have had long term success with Revlimid. My mom currently has 4% blasts and completed her 3rd week of Revlimid today. She started on 10mg, but her levels dropped significantly and her doctor reduced her to 10mg every other day. We are hoping to see the levels start creeping back up.

    Best Regards,

    Andrea

Viewing 5 posts - 1 through 5 (of 5 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