The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

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
Like Care

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
    Like Care
  • 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.
    Like Care
  • 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
    Like Care
  • 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.
    Like Care
  • 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).
    Like Care
  • 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
    Like Care
  • 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.
    Like Care
  • 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.
    Like Care

Discussion Boards