I am 67 and was diagnosed with smoldering myeloma 1 1/2 years ago. I was followed without treatment for 6 months and then, when my creatinine started to rise, I was started on therapy - Velcade / Cytoxan / dex (VCD / CyBorD) for 6 months.
I was then switched to Revlimid / dex (3 out of 4 weeks). I was initially started on Revlimid 25 mg and after 2 months I told my hematologist that I could not tolerate the extreme fatigue. He switched me to Revlimid 10 mg and dex 16 mg (3 out of 4 weeks). My light chains and M spike have come down nicely. I have very little fatigue. The only side effect I have which is fairly significant, is a persistent 'salty' taste in my mouth. I had written about this on the forum and I guess I am the only one that has this effect.
I actually had a peripheral neuropathy long before my myeloma was diagnosed. I have been taking R-alpha lipoic acid which has helped tremendously.
Sorry for the long post, but I would really discuss starting low with the Revlimid for a few months and working your way up, if necessary, rather than starting high and going down.
Forums
Re: Experience with Revlimid maintenance
I too have the bad taste from the Revlimid -- although I wouldn't describe mine as salty; mine is more like cotton-mouth (dry-mouth), but very annoying. I kept reducing the dose of the Revlimid, down to 2.5 mg and stopped completely 10 weeks ago, but have still not recovered from this very annoying side effect.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Experience with Revlimid maintenance
That is not one I have experienced. Fatigue, constipation, nausea, and low white and platelet counts have plagued me. It started taking my counts down, but they have rebounded and I'm not sure the Revlimid is still effective.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Experience with Revlimid maintenance
The questions that I keep wrestling with regarding Revlimid are dose, duration, and quality of life. And I realize that these are different for everybody.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Experience with Revlimid maintenance
I had the same response to the first few rounds of Revlimid (25 mg daily) and dex (20 mg weekly) when I started maintenance therapy. I was initially on a 3 week Revlimid / 1 week off schedule. The fatigue was really bad during the week off. After 3 months, my oncologist was reluctant to reduce my 25 mg dose because it was working well. Instead he changed my schedule to 2 weeks on Revlimid, then 1 week off. The fatigue issue was resolved for me and I have remained stable for the past 2 years.
Ask your doctor if this schedule would be appropriate for you. It's worth a try.
Ask your doctor if this schedule would be appropriate for you. It's worth a try.
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Bev Baccelli
Re: Experience with Revlimid maintenance
A salty taste is not a side effect that has been reported to me in the past, but every patient has unique experiences (as I am sure that you can all attest to). As long as your disease is well controlled, reduced dosing of Revlimid is quite reasonable.
Maintenance therapy – whether post HDM (high-dose melphalan)-ASCT or "continuing" therapy after induction – is meant to improve clinical outcomes (control of disease and overall survival). The caveat is that we also want to maximize quality of life as well. To this end, it is important to balance the two issues. I would continue to discuss with your oncologist.
Maintenance therapy – whether post HDM (high-dose melphalan)-ASCT or "continuing" therapy after induction – is meant to improve clinical outcomes (control of disease and overall survival). The caveat is that we also want to maximize quality of life as well. To this end, it is important to balance the two issues. I would continue to discuss with your oncologist.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Experience with Revlimid maintenance
My wife's myeloma returned four years and eight months after her stem cell transplant. She had not been on any maintenance therapy. At this point Revlimid, Velcade and dexamethasone were recommended. My request was to make a change in the starting Revlimid dosage from 25 mg to 10 mg based on reading various opinions from different multiple myeloma experts, and our doctor had no problem with this.
After about three cycles of this therapy, she went back into remission, and still is in remission now over three years latter. Initially, after going back into remission, she was placed on low-dose Revlimid for maintenance therapy. However, she went to no maintenance after about four weeks of constant diarrhea. This also had been an issue during relapse therapy so it appeared that Revlimid was the problem, even though the low dose Revlimid sure seemed to help her get back into remission.
Needless to say, every patient is different, so results will be different. But if the side effects cannot be tolerated, low dose, no dose, or a different drug might be the appropriate approach.
After about three cycles of this therapy, she went back into remission, and still is in remission now over three years latter. Initially, after going back into remission, she was placed on low-dose Revlimid for maintenance therapy. However, she went to no maintenance after about four weeks of constant diarrhea. This also had been an issue during relapse therapy so it appeared that Revlimid was the problem, even though the low dose Revlimid sure seemed to help her get back into remission.
Needless to say, every patient is different, so results will be different. But if the side effects cannot be tolerated, low dose, no dose, or a different drug might be the appropriate approach.
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kochmahoney
Re: Experience with Revlimid maintenance
I've been on 10 mg Revlimid maintenance for well over a year now with (knock on wood!) no significant side effects. I was also on it as induction therapy and had no issues with it then, either, so perhaps it just doesn't hit me as hard as it does some people.
I have noticed a taste that I think may be related to the Revlimid, but it's not salty. It's a somewhat fishy taste that is characteristic of amines. Since Revlimid falls into that category and I tend to notice this taste in the morning when I've had my pill, I think it's pretty likely that it's the culprit. That taste is not very strong, though, and it doesn't really bother me.
I have noticed a taste that I think may be related to the Revlimid, but it's not salty. It's a somewhat fishy taste that is characteristic of amines. Since Revlimid falls into that category and I tend to notice this taste in the morning when I've had my pill, I think it's pretty likely that it's the culprit. That taste is not very strong, though, and it doesn't really bother me.
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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
Re: Experience with Revlimid maintenance
I have a question for those that are on Revlimid maintenance 21 out of 28 days.
I recently switched from taking Revlimid 28 out of 28 days (i.e. every day) to taking it 21 out of 28 days. I had been taking Rev (every day)/dex (once per week) for the past 5 1/2 months. This last week was my first off week.
I was anticipating feeling better during my week off, but the opposite occurred. My sleep didn't improve, and I woke up with very slight headaches each morning which usually went away after the 1st cup of coffee. In other words, I just felt sort of blah each day.
I'm guessing I might be experiencing some type of withdrawal symptoms either from the Revlimid or from the dexamethasone. Or it could be that I just had a week where I didn't feel good for no known reason? Most people have those every so often anyway.
So my question is: Has anyone experienced any type of unexpected symptoms during their "week off" from Revlimid and dex? Or do you feel the same or better?
I recently switched from taking Revlimid 28 out of 28 days (i.e. every day) to taking it 21 out of 28 days. I had been taking Rev (every day)/dex (once per week) for the past 5 1/2 months. This last week was my first off week.
I was anticipating feeling better during my week off, but the opposite occurred. My sleep didn't improve, and I woke up with very slight headaches each morning which usually went away after the 1st cup of coffee. In other words, I just felt sort of blah each day.
I'm guessing I might be experiencing some type of withdrawal symptoms either from the Revlimid or from the dexamethasone. Or it could be that I just had a week where I didn't feel good for no known reason? Most people have those every so often anyway.
So my question is: Has anyone experienced any type of unexpected symptoms during their "week off" from Revlimid and dex? Or do you feel the same or better?
Last edited by DallasGG on Sun Dec 07, 2014 1:02 am, edited 1 time in total.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Experience with Revlimid maintenance
I am undergoing induction with Revlimid / dex after recent diagnosis (September 2014). I went through the first cycle with Revlimid 25mg / dex 40mg. I tolerated the 25 mg Revlimid dose poorly with extreme fatigue, abdominal pain and distention and constipation.
I tried starting the second cycle at the same dose but had to take a week off Revlimid after experiencing several episodes of passing out after eating, which initially I thought were due to low blood sugars, but in retrospect, they were likely caused by gastric distention.
I just finished the first week of my second cycle with Revlimid at 20 mg. I am having less fatigue but am still having some GI issues and also am having difficulty with concentration. Over the last several days, the bloating and gastric distention symptoms have improved by taking 4 mg of Zofran before my dose.
I have also experienced a "salty" annoying taste in my mouth! During my short time in treatment, I have felt significantly better, mentally and physically, when I am off Revlimid.
To Dallas:
I suspect that what you have experienced is likely withdrawal symptoms from the dex.
Rafael
I tried starting the second cycle at the same dose but had to take a week off Revlimid after experiencing several episodes of passing out after eating, which initially I thought were due to low blood sugars, but in retrospect, they were likely caused by gastric distention.
I just finished the first week of my second cycle with Revlimid at 20 mg. I am having less fatigue but am still having some GI issues and also am having difficulty with concentration. Over the last several days, the bloating and gastric distention symptoms have improved by taking 4 mg of Zofran before my dose.
I have also experienced a "salty" annoying taste in my mouth! During my short time in treatment, I have felt significantly better, mentally and physically, when I am off Revlimid.
To Dallas:
I suspect that what you have experienced is likely withdrawal symptoms from the dex.
Rafael
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rafaelmsantiagomd - Name: Rafael M Santiago MD
- Who do you know with myeloma?: Myself, some of my patients
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 62
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