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Starting Revlimid

Home Demo forums Patient Message Board Starting Revlimid

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Viewing 6 posts - 1 through 6 (of 6 total)
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    Diane Logan

    On Vidaza for 10 months, then stopped working. Now goung to start Revlimid. Feeling fine but 15% blasts and lots of chromosome mutations. Hope others out there have had success with Revlimid.

    wendi thomas

    My husband was diagnosed 7 years ago with low risk MDS. He was given Vidaza and it worked for a few months only. He received transfusions for years and was able to maintain a quality life until 2 years ago. His transfusions got more frequent and then he went on Revlimid and it was a miracle drug for him. He was able to tolerate it and had no transfusions for over 2 years. His HMG stayed between 11 and 12. He does not have 5Q deletion but yet the drug worked good. I hope the drug works for you.

    Carl Schneller

    I’m 82 year old male. Was diagnosed with MDS July 2018. 5Q and 7Q deletions. Tried Procrit for 9 months with no help. Had 3 blood transfusions and then went on revlimid 10 mg for 5 weeks and got bad rash so stopped for 2 weeks and then tried 5mg. rash came back and stopped again. During time taking Revlimid my hemoglobin went up into 11.0 plus and has stayed there. Revlimid has helped me and don’t know what to do if my hemoglobin drops to low again.

    Lee Warner

    Hello Carl. We got good news about Revlimid; perhaps this can help you if Revlimid is considered again.

    My husband has MDS 5q. Procrit failed. Then he had a severe rash reaction to Revlimid at the 10 mg dose. Two years later after Vidaza failed he was prescribed very low dose 2.5 mg Revlimid which caused a slight rash- much less severe than at 10 mg. The oncologist started him on a “cocktail” to combat the rash – and it works: 2 Pepcid tablets, one regular Claritin tablet, and one L-Lysine 500 tablet. The 2.5 mg Revlimid raised his hemoglobin to 10.2 but it took over 8 weeks with a transfusion of 2 units PRBC at week two, and another 2 units at week four.

    It’s now been six weeks since his last transfusion and his Hgb is at 10.2, up from 9.9 last week. That’s without a transfusion. Revlimid is working! The dose is only 2.5 mg, a level that the oncologist thought would not work, but would be useful to titer up to a higher dose. We have yet to learn whether the oncologist will recommend staying at low dose or increase it for more hemoglobin performance.

    He has to continue the “cocktail” of over-the-counter Pepcid/Claritin/L-Lysine but there’s nothing in that “cocktail” to count as a negative.

    You might ask your provider about this if your Hgb drops again.

    Kevin Dugan

    Have had great results with revlimid. No transfusions over 2 yrs. Hgb 11.9 last week.

    Lee Warner

    Congratulations, Kevin!
    This is a tricky disease- so good to hear Revlimid works for you. For my husband also – after Dx in 2018, 2.5 mg Revlimid raised his Hgb and he feels alive again!

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