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Revlimid as maintenance

I am interested how this leaves people feeling. I have read all I can and there seems to be some conflicts. Feeling lethargy, not able to do what they want, WBC count down, love life postphoned, less resistance to infection. I would like to hear some first person accounts of their experience.

  1. Hi McClain,

    I was on Revlimid for 2 years and seemed to live a pretty "normal" life. Yes you have to be careful being on it but I find that the same with any medicine you go on.

    Are these all symptoms that you are having, or that you have read about? Personally, I did not have a lower WBC count on it and did not put my love life on hold, just uber careful and safe. Although that was my experience remember that everyone can react to the same medicine in different ways.

    Have you talked to your doctor about your concerns?
    I hope that helps and please let me know if you have any other questions!

    1. Thank you for replying, I haven't started on Revlimid because of my concerns. I took it when we were fighting hard and preparing for SCT. The transplant was very successful it has been 6 months and I finally feel like me again. Recently they put me on maintenance, now that I feel good I read every word in the pamphlets and online. That is why I was asking, we are hoping to resume as normal a life as possible. Traveling and other pursuits and I take care of the grandkids after school etc. It appears that being on this chemo could restrict that so I am weighing options. Looking for input from others as there is no one in this area that has MM that I am aware of. We are very rural. So I really appreciate the reply. I didn't even know "watchful waiting" was an option either.

    2. - Glad to hear you are taking the time to weigh your options and decide what is best for you! Please keep us updated on how you are doing. Sending positive thoughts your way!

  2. Hi McClain,
    One of the hardest things for me to adapt to with this disease has been the point that you just made about a lack of consensus regarding how certain meds make us feel; especially in a long term maintenance situation. Great point and I'm really glad you brought it up! Hematological malignancies in general and myeloma in particular often affect patients in different ways. Its so tricky like that. Reactions to meds mirrors that diversity which can be really frustrating when trying to educate yourself and make the right decisions for yourself. Forums like this are so vitally important because they let folks share experiences directly....which is the best kind information. I tolerated Revlimid pretty well while I was on it. Other than some reduced blood lab values, fatique and taste changes I was able to carry on live as normal a life as I could.

    1. Hi, I'm currently still on Revlimed maintenance. I have a few pills that I dabble in taking that are left from my last prescription.I'm on the fence of continuing it, but my body has accepted the medication at about 4 years. I've spoken to a few who would rather continue with this drug despite being in remission. I'm even beginning to reconsider.

      1. I think it's very smart to wait and look into your options. The question I plan to ask my doctor when the times comes for me to make a decision is - will it extend my life, and will I be able to continue to live a full life? I hope this helps and good luck to you. Please keep us updated.

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