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Revlimid

hydranga
hydranga CSN Member Posts: 2
edited March 2014 in Multiple Myeloma #1
Hi, I have just started in a clinical drug study program with Revlimid. My doctor seems to think I may be on the drug rather than the placebo by the way my blood tests are reacting.
My question is side effects: Dizziness, headaches, fatigue, tremors and others. Is anyone on Revlimid, and are these associated side effects? Thank-you
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Comments

  • AuthorUnknown
    AuthorUnknown CSN Member Posts: 1,537 Member
    #2
    Hello,

    You may want to conside contacting the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and can assist you with questions regarding side effects of cancer treatments. They can be reached at 1-800-227-2345.

    Take care and be well,

    Dana
    CSN Dana
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  • janec
    janec CSN Member Posts: 4
    #3
    I have also just started Revlimid---been on for two months. My white count dropped a bit after the first month, and dropped quite a bit the second (down to 1200) so I am off for a while, and my oncologist is checking with the pharmasist to change the dose. The only side effect I can report are really tight calf muscles and some calf cramps (yeowch) upon waking. Info about the drug did mention muscle cramps as a side effect. Good luck to you.
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  • Rambo115
    Rambo115 CSN Member Posts: 3
    #4
    janec said:

    I have also just started Revlimid---been on for two months. My white count dropped a bit after the first month, and dropped quite a bit the second (down to 1200) so I am off for a while, and my oncologist is checking with the pharmasist to change the dose. The only side effect I can report are really tight calf muscles and some calf cramps (yeowch) upon waking. Info about the drug did mention muscle cramps as a side effect. Good luck to you.

    how have you been doing? are you off yet? in remission? i will start treatment in about 2 weeks? what was your dose
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  • kareng7078
    kareng7078 CSN Member Posts: 2
    #5
    I was on Revlimid for 3 months off now cause it interfers in harvesting stem cells. Be my side affect were fatigue and terrible flem I comstantly couged up and that made me sick.But Ive been off Revlimid for 3 weeks and 2 1/2 weeks I was terrible sick lost 7lbs. I think the side affects are different in different people. I also pretty much lost my voice. Had some dizziness but no tremors. Get shaky from the styrods I take. I've lost 35 to 40 because of the Revlimid making me sick.
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  • jimmy43d
    jimmy43d CSN Member Posts: 2
    #6
    kareng7078 said:

    I was on Revlimid for 3 months off now cause it interfers in harvesting stem cells. Be my side affect were fatigue and terrible flem I comstantly couged up and that made me sick.But Ive been off Revlimid for 3 weeks and 2 1/2 weeks I was terrible sick lost 7lbs. I think the side affects are different in different people. I also pretty much lost my voice. Had some dizziness but no tremors. Get shaky from the styrods I take. I've lost 35 to 40 because of the Revlimid making me sick.

    Been on 15mg daily dosage since Sept. 2010 after stem cell transplant. I take it at lunch to avoid being fatigued as soon as I begin the day. It also aggrevates the arthritus, but appears to maintain a low cancer cell count in my blood. As long as my blood tests continue to reflaect a low count , I will continue to take it. I was originally on thalidamid, but the side effects were much worse (rashes, skin fungus, etc).
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  • Carmelo2911
    Carmelo2911 CSN Member Posts: 2
    #7
    jimmy43d said:

    Been on 15mg daily dosage since Sept. 2010 after stem cell transplant. I take it at lunch to avoid being fatigued as soon as I begin the day. It also aggrevates the arthritus, but appears to maintain a low cancer cell count in my blood. As long as my blood tests continue to reflaect a low count , I will continue to take it. I was originally on thalidamid, but the side effects were much worse (rashes, skin fungus, etc).

    Hi Jimmy....can u pls tell me if your insurance carrier pays for Revlamid.

    Thanks...Carmelo
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  • arky70
    arky70 CSN Member Posts: 3
    #8
    Carmelo2911 said:

    Hi Jimmy....can u pls tell me if your insurance carrier pays for Revlamid.

    Thanks...Carmelo

    I completed a 4 year clinical trial begining in November 2004. As part of the trial I underwent two stem cell transplants and three years of maintenance chemo. After the trial ended in November of 2008 I began taking a new chemo drug, revlimid 5mg daily. I take my Revlimid at bedtime per doctor's instruction. I do have side effects: cramps in legs and feet and also in my hands. It is not clear to me which drug caused the bulk of this problem. another side effect is fatigue. I get up most mornings ready to go but by noon or shortly thereafter I feel totally exhausted. But it sure has been a good life the past few years. I am now a 7+ year survivor.
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  • gtaa_driver
    gtaa_driver CSN Member Posts: 5
    #9
    arky70 said:

    I completed a 4 year clinical trial begining in November 2004. As part of the trial I underwent two stem cell transplants and three years of maintenance chemo. After the trial ended in November of 2008 I began taking a new chemo drug, revlimid 5mg daily. I take my Revlimid at bedtime per doctor's instruction. I do have side effects: cramps in legs and feet and also in my hands. It is not clear to me which drug caused the bulk of this problem. another side effect is fatigue. I get up most mornings ready to go but by noon or shortly thereafter I feel totally exhausted. But it sure has been a good life the past few years. I am now a 7+ year survivor.

    I just celebrated 2yrs since my stem cell transplant. I am on a 10mg maintance dose and also have the same side effects. My doctor has me on 75mg of Lyrica 3 time a day to combat the side effects. It helps but I sometimes have a bad day if I overdo myself and have to be careful not to get too fatigued.
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