A few years ago my mother had chemotherapy (thalidomide). She was hospitalized for several weeks, but she eventually recovered and was able to live a relatively normal life in remission for over a year.
When her multiple myeloma started coming back, she was put on Velcade - but found the side-effects too much, so stopped after a few months. My mother was then put on a 'maintenance therapy' of Revlimid/Dexamethasone, which she's been on since the start of this year.
It seems to be doing the job, cancer-wise; but her quality of life has hit a new low. She wakes up every day feeling nauseous and worn-out; she shakes, and says she feels like she's not here. She can't go out because she feels so rough (in fact, she hasn't left the house in several months). None of this is helping her mental health, either. Her dose was reduced in response, but she still doesn't feel any better.
She's now saying she's considering stopping chemotherapy completely, as it's no way to live. I'm uneasy about this, of course, as I don't think there are many (any?) options left on the NHS after this one.
Is anyone experiencing similar issues?
One thing we considered is whether it's possible to take Revlimid without dex, as most of her symptoms seem to be related to the latter; is this a viable option, or a waste of time?
Are there any other things she can do to improve her situation? Or is it time to really think about the reality of coming off these drugs?
Thanks for any and all responses.
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Re: Quality of life vs. maintenance treatment
Hello Debkinsh,
Revlimid is often given as maintenance without dexamethsone. So that is an option.
I suspect the nausea is more likely related to the Revlimid than the steroids but either is a possible culprit. For maintenance one can reduce the Revlimid dose to as low as 5 milligrams every other day. In addition, maintenance is not a mandatory part of myeloma treatment but it is routinely used around the world in 2013. In other words, once the myeloma is in control (preferable a complete remission) then all therapy could be stopped and the patient observed (without maintenance therapy). There are a number of other drugs that can be used to treat myeloma that your mother has not had. If she cannot tolerate Velcade then carfilzomib (Kyprolis) could be used. A number of older drugs are also possibilities.
I hope that the doctors can find a way to treat your mother without severe side effects.
Revlimid is often given as maintenance without dexamethsone. So that is an option.
I suspect the nausea is more likely related to the Revlimid than the steroids but either is a possible culprit. For maintenance one can reduce the Revlimid dose to as low as 5 milligrams every other day. In addition, maintenance is not a mandatory part of myeloma treatment but it is routinely used around the world in 2013. In other words, once the myeloma is in control (preferable a complete remission) then all therapy could be stopped and the patient observed (without maintenance therapy). There are a number of other drugs that can be used to treat myeloma that your mother has not had. If she cannot tolerate Velcade then carfilzomib (Kyprolis) could be used. A number of older drugs are also possibilities.
I hope that the doctors can find a way to treat your mother without severe side effects.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Quality of life vs. maintenance treatment
I have a related question. My mother started suffering from severe weakness/fatigue (can't leave the house) one week into her second cycle of Revlimid (we're now at the end of the second cycle). Provided the weakness is indeed caused by the Rev and that her protein levels have gone down (not tested yet, I think planned for the third cycle), how long should she take the Revlimid? She's on 15mg (and weekly 40mg Dex) and had rather high protein levels at relapse (I posted all numbers here: https://myelomabeacon.org/forum/agrressive-relapse-and-not-doing-so-well-with-therapy-t2092.html). it is very frightening to see her so weak.
Dear Debkinsh, I wish you and your mother all the best!
Dear Debkinsh, I wish you and your mother all the best!
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Anonymous
Re: Quality of life vs. maintenance treatment
Who knew so much information (and hope!) could be stuffed into such a small paragraph? Thanks so much for this, Dr. Libby—it gives us several things to discuss with my mother's consultant next week!
P.S. Thanks Anonymous. I hope your mother feels better soon.
P.S. Thanks Anonymous. I hope your mother feels better soon.
Re: Quality of life vs. maintenance treatment
I certainly understand what your Mom is going through. Although not quite as bad I have to force myself to go outside for a walk or a short trip to the grocery store. I have enough energy to trade stocks and have done quite well....but no energy to go spend the money !!!
I am on rev and dex for maintenance 3 weeks on and one week off for the rev. 10mgs all at once weekly for the dex. When I complained about the extreme fatigue my doc took me off the dex for a while but my markers started trending up and we went back on the dex which worked. One thing you might try is a vitamiin B12 shot. It might be pschosymatic but it seems I feel better for a few days after the shot. It might be worth a try.
I am on rev and dex for maintenance 3 weeks on and one week off for the rev. 10mgs all at once weekly for the dex. When I complained about the extreme fatigue my doc took me off the dex for a while but my markers started trending up and we went back on the dex which worked. One thing you might try is a vitamiin B12 shot. It might be pschosymatic but it seems I feel better for a few days after the shot. It might be worth a try.
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Chuck Lindgren
Re: Quality of life vs. maintenance treatment
I have been on 10mg Revlimid for three week cycles with one week off for over a year and a half. My red blood cell count, white blood cell count, hemoglobin, and platelets are always hovering just below or just above the normal ranges. I seem to get sick easier and when I do it takes longer to than to get well again.
I swim about 8000 to 12000 yards a week and ride my bike between 30 to 60 miles on weekends and occasionally longer rides up to 100 miles. Two weeks ago I hiked 30 miles in Yosemite National Park including an 18 mile round trip hike up to the top of Half Dome. I can track my energy levels with my hemoglobin levels and feel fatigued at times. Overall though I seem to be doing far better than most people on maintenance Revlimid based on reading other people experiences on the Beacon. I realize though that when people make a post on something like the Beacon they are probably doing so because they are having difficulty, not because they are doing well.
I swim about 8000 to 12000 yards a week and ride my bike between 30 to 60 miles on weekends and occasionally longer rides up to 100 miles. Two weeks ago I hiked 30 miles in Yosemite National Park including an 18 mile round trip hike up to the top of Half Dome. I can track my energy levels with my hemoglobin levels and feel fatigued at times. Overall though I seem to be doing far better than most people on maintenance Revlimid based on reading other people experiences on the Beacon. I realize though that when people make a post on something like the Beacon they are probably doing so because they are having difficulty, not because they are doing well.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Quality of life vs. maintenance treatment
I'm very concerned about a number of side effects and Rev seems the culprit. I'm on the 3 week on and 1 off rotation with 15mg Rev, Valtrex, Vitamin D, and aspirin with Zometa once monthly. It has been about 20 months now.
I'm very tired and feel almost weak some times. I have an increase in chemo brain recently, and now severe cramping in my torso. My quality of life is dropping and I worry about my performance at work with the tiredness and my reappearing chemo brain.
I'm very tired and feel almost weak some times. I have an increase in chemo brain recently, and now severe cramping in my torso. My quality of life is dropping and I worry about my performance at work with the tiredness and my reappearing chemo brain.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Quality of life vs. maintenance treatment
Is time to progression different if you have achieved complete remission v. partial remission(all other things being equal)(0 m-spike v. 0.3)(no multiple myeloma symptoms)
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Quality of life vs. maintenance treatment
Maintenance therapy with Lenalidomide/Rev or other therapies is becoming a major component of myeloma therapy largely as the result of 2 randomized placebo control phase 3 trials. Both demostrating significant improvements in control of disease (delay of progression- TTP or PFS). Only one study, to date (unless there has been an update on the European trial that I am not aware of), has demonstrated a signficant improvement in OS (overall survival) the CALGB study- McCarthy et al NEJM 2012. As the data matures from the CALGB study the improvements appear to be increasing- favoring maintenance therapy. So, I generally continue to recommend maintenance therapy for most patients post transplant. But it is important to discuss the risks and benefits of maitenance therapy with everyone.
I believe the quality of life is a critical component to maintenance therapy. Dosing on the studies was 5-15mg orally daily (every day). Therefore, you still have a number of dose levels to try if you are receiving 15 mg daily (or 1-21/28). I would recommend dose reductions to determine if you tolerance improves. Anecdotedly, I have seen a small minority of my patients who tolerated 25mg of Rev with induction that do not tolerate the lower doses as well and dose reductions or even altered management strategies are necessary.
Regarding the question of does depth of response of matter post transplant. The studies did not directly address this question (were not powered to do so). However, it is generally accepted that depth of response does have some bearing on duration of control. This likely represents a marker of an individuals disease biology. This is not to say that a significant benefit is not gained by maintenance therapy regardless of the depth of reponse. The studies both demonstrated gains for the majority of individuals.
I believe the quality of life is a critical component to maintenance therapy. Dosing on the studies was 5-15mg orally daily (every day). Therefore, you still have a number of dose levels to try if you are receiving 15 mg daily (or 1-21/28). I would recommend dose reductions to determine if you tolerance improves. Anecdotedly, I have seen a small minority of my patients who tolerated 25mg of Rev with induction that do not tolerate the lower doses as well and dose reductions or even altered management strategies are necessary.
Regarding the question of does depth of response of matter post transplant. The studies did not directly address this question (were not powered to do so). However, it is generally accepted that depth of response does have some bearing on duration of control. This likely represents a marker of an individuals disease biology. This is not to say that a significant benefit is not gained by maintenance therapy regardless of the depth of reponse. The studies both demonstrated gains for the majority of individuals.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
9 posts
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