I've taken 40 months of 10 mg Revlimid and dexamethasone following an autologous transplant. I'm considering stopping maintenance primarily over concerns about the long-term effects of taking Revlimid-dex. My lab results have all been good with no bad proteins, and my light chains are in good shape.
Here are my questions: What does research show about regressing when one stops Revlimid maintenance after taking it already for several years ... or ... Should I expect to take Revlimid and dex forever?
Forums
Re: Should I quit Revlimid and dex maintenance?
I have also been on Revlimid and 40 mg dexamethasone and have the same questions you are asking. I feel addressing whether you should continue on maintenance therapy or not is something that you should really address with your oncologist, or another oncologist as a second opinion who can examine you and evaluate your particular case.
It is likely among oncologists that you could get different recommendations and you will have to decide what path you want to go. It would be a bit irresponsible for someone without a medical license to provide any advice on this based just on a forum posting with limited information. The consequences and outcome of the decision made are not trivial.
The question about research regarding maintenance therapy effectiveness is a good one but, after reading the Beacon for three years, I see that responses to myeloma treatment can be very individual.
It is likely among oncologists that you could get different recommendations and you will have to decide what path you want to go. It would be a bit irresponsible for someone without a medical license to provide any advice on this based just on a forum posting with limited information. The consequences and outcome of the decision made are not trivial.
The question about research regarding maintenance therapy effectiveness is a good one but, after reading the Beacon for three years, I see that responses to myeloma treatment can be very individual.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Should I quit Revlimid and dex maintenance?
I agree with Eric that this is something you should discuss seriously with your oncologist. I faced this same decision just over two years ago upon completing a clinical trial and discussed it with my oncologist at the time. Similar to you, I had concerns about long-term use of Revlimid, plus a variety of other factors weighing into my decision.
In the end, against my oncologist's recommendation, I chose to go drug free. About a year later, I started to relapse and went back on Revlimid / dex maintenance and have been stable since. At the time of my relapse, the majority of patients that stayed on Revlimid / dex maintenance after the trial were still in remission - so perhaps my decision was not the best.
Regarding whether you 'should expect to take Revlimid and dex forever', the other comment I'll make is that I've had discussions with my current oncologist and the one I was in the trial with, and both have indicated there is a trend with some oncologists toward continuous, ongoing treatment of multiple myeloma. There is at least one clinical trial going on that will treat patients indefinitely to see if very long term response can be maintained by treating multiple myeloma chronically. If my levels had not stabilized, I was considering entering this trial.
In the end, against my oncologist's recommendation, I chose to go drug free. About a year later, I started to relapse and went back on Revlimid / dex maintenance and have been stable since. At the time of my relapse, the majority of patients that stayed on Revlimid / dex maintenance after the trial were still in remission - so perhaps my decision was not the best.
Regarding whether you 'should expect to take Revlimid and dex forever', the other comment I'll make is that I've had discussions with my current oncologist and the one I was in the trial with, and both have indicated there is a trend with some oncologists toward continuous, ongoing treatment of multiple myeloma. There is at least one clinical trial going on that will treat patients indefinitely to see if very long term response can be maintained by treating multiple myeloma chronically. If my levels had not stabilized, I was considering entering this trial.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Should I quit Revlimid and dex maintenance?
I just met with my specialist last week as I've been on 15 mg of Revlimid for 1.5 years on maintenance. We are going to drop to 10 mg for four months and then stop treatment. We'll see how long I stay in remission. My specialist feels using dex long term can cause issues and avoids its use on maintenance.
Jerry
Jerry
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Should I quit Revlimid and dex maintenance?
GBoyer,
Hearing others' experiences and what other specialists advised to them is extremely useful information. Not sure why some feel the need to preface their advice with "please ask your doctor". Ha. I mean, it's why we come to this forum, right? To ask questions in a non-formal, non-pressure setting. It helps us be better prepared for our next doctor visit.
I started maintenance Revlimid / dex in late 2010. At that time, my myeloma specialist from UCSF said we'd watch and wait, and if all went well, I might be on maintenance for life, or at least a very long time.
At the end of 2 years, I had no adverse reactions, numbers were all stable, but he changed his mind due to some studies that were released in 2012.
It wasn't "hey get off this stuff right now!!" advice, but, from what he'd seen, there was a benefit to taking it for 2 years. And, after 2 years, it was less clear if maintaining the regimen would offer any additional benefit. In light of the risk of secondary cancers, he advised I stop at 2 years. He said he'd have no problem with me continuing it either, but thought it best to stop at 2 years.
That was over 2 years ago and I am feeling great.
He said if I had a higher risk myeloma, I might go another year. Or if I had been having platelet or other issues related to the Revlimid / dex, he might have only kept me on it for one year.
Good luck to you.
Hearing others' experiences and what other specialists advised to them is extremely useful information. Not sure why some feel the need to preface their advice with "please ask your doctor". Ha. I mean, it's why we come to this forum, right? To ask questions in a non-formal, non-pressure setting. It helps us be better prepared for our next doctor visit.
I started maintenance Revlimid / dex in late 2010. At that time, my myeloma specialist from UCSF said we'd watch and wait, and if all went well, I might be on maintenance for life, or at least a very long time.
At the end of 2 years, I had no adverse reactions, numbers were all stable, but he changed his mind due to some studies that were released in 2012.
It wasn't "hey get off this stuff right now!!" advice, but, from what he'd seen, there was a benefit to taking it for 2 years. And, after 2 years, it was less clear if maintaining the regimen would offer any additional benefit. In light of the risk of secondary cancers, he advised I stop at 2 years. He said he'd have no problem with me continuing it either, but thought it best to stop at 2 years.
That was over 2 years ago and I am feeling great.
He said if I had a higher risk myeloma, I might go another year. Or if I had been having platelet or other issues related to the Revlimid / dex, he might have only kept me on it for one year.
Good luck to you.
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stann
Re: Should I quit Revlimid and dex maintenance?
It certainly seems a balance between our individual responses and what we can learn from others. For me, my specialist was against maintenance therapy after my stringent complete response achieved after my second stem cell transplant (SCT). Thank God I reached sCR in Aug 2013.
Did a clinical trial with chemo to knock down the immune system prior to an infusion of modified T-cells in October 2013. Drug free since then. I feel I'm getting slowly stronger and am grateful for every day.
Did a clinical trial with chemo to knock down the immune system prior to an infusion of modified T-cells in October 2013. Drug free since then. I feel I'm getting slowly stronger and am grateful for every day.
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Brent M - Name: Brent M
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sep 2012
- Age at diagnosis: 41
Re: Should I quit Revlimid and dex maintenance?
I am on 25 mg Revlimid and 20 mg dex per week but the drug seems to have lost its effectiveness. I think that while it works you should remain on it. I hate taking steroids. However, this dose – apart from sleeplessness once a week – seems to be not too bad. Was on higher dose last year on a clinical trial with Velcade and hated the side effects. Would rather not take it at all, but apparently it is supposed to make treatment with accompanying chemo drug more effective. Is that really the case? Not sure. What are the long term effects of taking steroids?
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Elena - Name: Elena
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 62
Re: Should I quit Revlimid and dex maintenance?
Elena,
I was on 25 mg Revlimid and 40 mg dex for a couple of months and then 25 mg Revlimid and 20 mg dex for a couple of more. I tapered off the dex completely about a month ago, as it became increasingly challenging to deal with after nearly six months. I am waiting on my lab results for the next few months to see if 25 mg Revlimid alone will keep my myeloma in check.
I hate dex too, but it is one of the most effective drugs for treating myeloma and I realize I will likely have to use it again in the future -- hopefully many months from now. I am hoping a couple of months break will allow my endocrine system to reset some before I have to use dex again.
I would recommend talking with your doctor about the effects of long-term dexamethasone and do some research into this yourself. It would be good to know what the effects are and be aware if you start experiencing them. I started seeing an endocrinologist who seemed more familiar with this than my oncologist was. One of the effects you may be particularly interested in is loss of bone density and osteoporosis. In my HMO, the guidelines for long-term dex use require bone density scans, which I started doing on the endocrinologist's orders. My oncologist did not seem aware of this.
I was on 25 mg Revlimid and 40 mg dex for a couple of months and then 25 mg Revlimid and 20 mg dex for a couple of more. I tapered off the dex completely about a month ago, as it became increasingly challenging to deal with after nearly six months. I am waiting on my lab results for the next few months to see if 25 mg Revlimid alone will keep my myeloma in check.
I hate dex too, but it is one of the most effective drugs for treating myeloma and I realize I will likely have to use it again in the future -- hopefully many months from now. I am hoping a couple of months break will allow my endocrine system to reset some before I have to use dex again.
I would recommend talking with your doctor about the effects of long-term dexamethasone and do some research into this yourself. It would be good to know what the effects are and be aware if you start experiencing them. I started seeing an endocrinologist who seemed more familiar with this than my oncologist was. One of the effects you may be particularly interested in is loss of bone density and osteoporosis. In my HMO, the guidelines for long-term dex use require bone density scans, which I started doing on the endocrinologist's orders. My oncologist did not seem aware of this.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Should I quit Revlimid and dex maintenance?
The power of this forum is the opportunity to share our stories and listen to a broad section of community members, so I really appreciate each response.
I should've given my subject a more appropriate title, as I wasn't seeking a specific recommendation to continue or stop taking Revlimid and dex as much as I wanted to hear from others who were also facing this issue.
There are many things that go into this decision: Yes, the advice of my oncologist, clinical data, side effects of Revlimid and dex and potential side effects (osteoporosis, muscle degeneration, blood cancers, etc.) of continuing Revlimid and dex versus time to relapse and the effectiveness of the next therapy when one quits treatment. Your personal experiences are as important as any of those other variables, and I thank you for sharing.
I should've given my subject a more appropriate title, as I wasn't seeking a specific recommendation to continue or stop taking Revlimid and dex as much as I wanted to hear from others who were also facing this issue.
There are many things that go into this decision: Yes, the advice of my oncologist, clinical data, side effects of Revlimid and dex and potential side effects (osteoporosis, muscle degeneration, blood cancers, etc.) of continuing Revlimid and dex versus time to relapse and the effectiveness of the next therapy when one quits treatment. Your personal experiences are as important as any of those other variables, and I thank you for sharing.
Re: Should I quit Revlimid and dex maintenance?
I have been on Revlimid for 3 years now. The only side effects I have are occasional fatigue. I am on 5 mg and have had a steady remission.
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