- Deep vein thrombosis (DVT) while early on 15 mg
- Constant dry mouth (more annoying than it sounds); the higher the dose the worse this symptom.
- GI Issues - diarrhea and constipation
- Insomnia
- Fatigue
Coach Hoke
Forums
Re: Revlimid maintenance and its side effects
My side effects after two years on, one year off, and back on for the last four months:
Coach Hoke
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Revlimid maintenance and its side effects
Thanks, coachhoke.
It is amazing that your markers are responding well to just a 2.5 mg Revlimid dose. I am sure the side effects are much milder with such a small dose compared to the 15 mg. I hope you continue to do well with this 'tolerable' treatment. Was adding a small weekly dose of dex (8 mg?) ever considered? I have seen this suggested. My own oncologist is pretty much against it, in light of the long-term side effects of dex. The experts seem to be equally divided on this dex supplement to enhance the Revlimid effectiveness.
Yes, the size of the dose seemed to have made little difference when my Revlimid dose was being adjusted during my transition to the maintenance phase. I could not tolerate the original 15 mg Revlimid dose (Revlimid rash), 21 days on and 7 days off , as soon as the weekly dex was stopped. An alternate day 15 mg and a lower 10 mg dose for 21 days on and 7 days off were tried but none of that seemed to matter. I am in the 6th month of the alternate day 20 mg dose now and I am wondering if that should be reduced to 15 mg (alternate day) soon.
My oncologist is against any Revlimid holiday, in the absence of any severe side effects, I think.
I have been taking the 81 mg coated aspirin from the very beginning of my treatment and it may have helped avoid any deep vein thrombosis (DVT) or similar other side effects.
My main side effect, besides the Revlimid rash caused by the higher dose, is the alternate day fatigue that I experience the day after I take the Revlimid at night. It seems to be minimal if I avoid any big meals and also if I am busy with any project. I did drink a bottle of Ensure a couple times when I felt quite tired and it seemed to help. I just hope that these side effects remain tolerable over a long, long time.
I wonder how the others are coping with the Revlimid maintenance (there were no new posts on this topic for almost a year). I know of a few patients doing well with the Revlimid maintenance for 10+/- years and a few others that had to try other treatments because Revlimid became ineffective or because the side effects became intolerable in their cases. I hope all of us continue to tolerate and respond to this current maintenance treatment.
As to the insomnia: I have had a great success with just half an adult Benadryl (diphenhydramine) on a few sleepless nights. Thanks TracyJ. She had suggested that when I first joined the Beacon and asked for advice on coping with the induction therapy. However, as mikeb had pointed out (as I recall) in some prior discussions, some patients may not tolerate Benadryl or its side effects and one can take other medication to help fall asleep.
It is amazing that your markers are responding well to just a 2.5 mg Revlimid dose. I am sure the side effects are much milder with such a small dose compared to the 15 mg. I hope you continue to do well with this 'tolerable' treatment. Was adding a small weekly dose of dex (8 mg?) ever considered? I have seen this suggested. My own oncologist is pretty much against it, in light of the long-term side effects of dex. The experts seem to be equally divided on this dex supplement to enhance the Revlimid effectiveness.
Yes, the size of the dose seemed to have made little difference when my Revlimid dose was being adjusted during my transition to the maintenance phase. I could not tolerate the original 15 mg Revlimid dose (Revlimid rash), 21 days on and 7 days off , as soon as the weekly dex was stopped. An alternate day 15 mg and a lower 10 mg dose for 21 days on and 7 days off were tried but none of that seemed to matter. I am in the 6th month of the alternate day 20 mg dose now and I am wondering if that should be reduced to 15 mg (alternate day) soon.
My oncologist is against any Revlimid holiday, in the absence of any severe side effects, I think.
I have been taking the 81 mg coated aspirin from the very beginning of my treatment and it may have helped avoid any deep vein thrombosis (DVT) or similar other side effects.
My main side effect, besides the Revlimid rash caused by the higher dose, is the alternate day fatigue that I experience the day after I take the Revlimid at night. It seems to be minimal if I avoid any big meals and also if I am busy with any project. I did drink a bottle of Ensure a couple times when I felt quite tired and it seemed to help. I just hope that these side effects remain tolerable over a long, long time.
I wonder how the others are coping with the Revlimid maintenance (there were no new posts on this topic for almost a year). I know of a few patients doing well with the Revlimid maintenance for 10+/- years and a few others that had to try other treatments because Revlimid became ineffective or because the side effects became intolerable in their cases. I hope all of us continue to tolerate and respond to this current maintenance treatment.
As to the insomnia: I have had a great success with just half an adult Benadryl (diphenhydramine) on a few sleepless nights. Thanks TracyJ. She had suggested that when I first joined the Beacon and asked for advice on coping with the induction therapy. However, as mikeb had pointed out (as I recall) in some prior discussions, some patients may not tolerate Benadryl or its side effects and one can take other medication to help fall asleep.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Revlimid maintenance and its side effects
KShash,
I think that there is no doubt that dex is synergistic with Revlimid.; but I was not able to tolerate it (mostly due to glaucoma).
I don't know of any trials (or in fact anybody else) who has taken that low a dose (2.5 mg) of Revlimid. I guess I'm a trial of one.
Coach Hoke
I think that there is no doubt that dex is synergistic with Revlimid.; but I was not able to tolerate it (mostly due to glaucoma).
I don't know of any trials (or in fact anybody else) who has taken that low a dose (2.5 mg) of Revlimid. I guess I'm a trial of one.
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Revlimid maintenance and its side effects
I'm resurrecting this thread due to some possible Revlimid side effects after about six years at 10 mg /day for maintenance.
Over the last couple of years, I've had some GI issues that started out sporadic and relatively rare but which have slowly progressed to being "more often than not". These include diarrhea, which is controllable with Imodium (loperamide) and which will be an issue for a couple of days and then go away for a couple of days. There are also upper GI issues that include mild nausea and a general feeling of yuck after eating just about anything. Sometimes, the feeling of yuck includes some pain in my stomach. Overall, there seem to be top-to-bottom issues going on here.
I suppose it's possible that there's something else going on but my last colonoscopy was good, and I recently had an upper GI endoscopy that was clean as well. Given that diarrhea is a common side effect, it seems pretty likely that the Revlimid is to blame.
After reading through this thread, I guess I can consider myself lucky for this to have only crept up on me after six years. When I started with Revlimid, I had very few side effects. A couple of years ago, I developed a little numbness on the bottoms of my feet, but nothing that was significant. This GI stuff is really getting to be a pain, though, and it looks like it may be time to at least try reducing the dose.
I'm wondering how common it is for these sort of problems to develop after so many years on Revlimid maintenance.
Mike
Over the last couple of years, I've had some GI issues that started out sporadic and relatively rare but which have slowly progressed to being "more often than not". These include diarrhea, which is controllable with Imodium (loperamide) and which will be an issue for a couple of days and then go away for a couple of days. There are also upper GI issues that include mild nausea and a general feeling of yuck after eating just about anything. Sometimes, the feeling of yuck includes some pain in my stomach. Overall, there seem to be top-to-bottom issues going on here.
I suppose it's possible that there's something else going on but my last colonoscopy was good, and I recently had an upper GI endoscopy that was clean as well. Given that diarrhea is a common side effect, it seems pretty likely that the Revlimid is to blame.
After reading through this thread, I guess I can consider myself lucky for this to have only crept up on me after six years. When I started with Revlimid, I had very few side effects. A couple of years ago, I developed a little numbness on the bottoms of my feet, but nothing that was significant. This GI stuff is really getting to be a pain, though, and it looks like it may be time to at least try reducing the dose.
I'm wondering how common it is for these sort of problems to develop after so many years on Revlimid maintenance.
Mike
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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