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Deletion 5Q MDS Treatment

Home Demo forums Patient Message Board Deletion 5Q MDS Treatment

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #55829
    ROBERT HOGAN
    Participant

    Has anyone heard of or presently being treated with any new medications. It seems like anything new I read about clearly does not include 5Q. I had 2 successful years with Revlimid, but then nothing with Procrit or Inqovi. My HGB is dropping so I’m getting very close to requiring transfusions again after 9 weeks without. Just hoping for any ray of sunshine.

    #55843
    Tom Nelson
    Participant

    As mentioned before, have been on Aranesp for 2+ years and has kept the Hgb above 8 , down from 9.5 when stared. Had rash reaction from Revlimid 4 years ago at 5 mg. Have restarted Revlimid at 2.5 to see if I can tolerate. Rash seems to be coming back after 3 weeks. Will give it a good try. No transfusions so far. T

    #56393
    Joe Catalano
    Participant

    How’s the air in his increased your red blood cell count and has that helped rwleqve your fatigue ?

    #57545
    Lee Warner
    Participant

    Tom Nelson, your rash is coming back even at low dose 2.5 Revlimid. Can you talk with your oncologist about treating the rash in an unconventional manner? My husband’s oncologist told him to take a “cocktail” of over-the-counter meds…. 2 Pepcid pills, one Claritin pill, and one L-Lysine each day to see if the rash cleared. It did! He takes Revlimid only on Monday, Wednesday, and Friday.

    Revlimid at 10 mg caused a severe raised-welt rash nearly all over his body. At Revlimid 2.5, three days a week, and taking the “cocktail” he is rash-free. We’ve just started reducing the “cocktail” from every day to taking it only on M W and F with the Revlimid pill.

    So far just a tiny rash on the insides of his forearms, not even requiring hydrocortisone. It clears then re-appears, then clears again.

    #57783
    Tom Nelson
    Participant

    Did stop the Revlimid after 4 months. Rash was becoming a problem. Had 4 transfusions due to low HGB. Next step was going to be trying the “cocktail” if the rash was tolerable. Had a hospitalization of CHF caused by lots of added on fluids. Could not determine if Revlimid was a partial cause. Now back to Aranesp every 2 weeks. HGB seems to be rising on its own. Maybe the Revlimid kick started the stem cells. Will wait and see. Feeling great with drop in fluid retention.

    #57787
    Lee Warner
    Participant

    Tom, that is great news! Revlimid does have a significantly long list of side effects. I am so happy for everyone who finds treatment that works! Aranesp is one I can ask about if a change is needed later. It was surprising to us that a 1/4 dose, 2.5 mg, of Revlimid worked just fine.

    Thanks for responding. Keep on keeping on, and hope you have a grand 2022!

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

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