I have been on Revlimid for over two years, 15mg 3 weeks on 1 week off. I have been wrestling with it and have asked my doctors to re-evaluate my dose and consider dropping it to 10mg for a test.
I just recently went through a severe gut infection and experience continuous neuropathy in my hands and feet. I am having trouble controlling a pen and have started falling with my clumsy feet. I also work and am finding the effects of chemo brain are getting worse. It is hard to focus and my memory recall is sluggish. Task completion and drive are less than normal and I find I'm unusually low emotionally. I also have wanky bowels often with severe constipation.
How have others found Revlimid after awhile? I have generally tolerated chemo well in early treatment and the ASCT [autologous stem cell transplant], but the side effects are dragging me down more than normal with no relief in sight.
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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: Having trouble with Revlimid, opinions?
I could not tolerate even 10 mg, and took 5 mg 14 days and 7 days off for about a year. Still had fatigue, diarrhea and low mood, so I took a six-month break, during which my CR held. Ironically, I began taking Revlimid again in October and the next month had a small M spike, which has held for three months. I'm now going to try Velcade injections, to knock back the disease -- hopefully with fewer side effects.
Prior to Revlimid I had Velcade, Doxil and dex as frontline therapy and ASCT.
Prior to Revlimid I had Velcade, Doxil and dex as frontline therapy and ASCT.
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Ron - Name: Ron
- When were you/they diagnosed?: Nov. 2010
- Age at diagnosis: 63
Re: Having trouble with Revlimid; opinions?
Hi Bob. I took Revlimid as a maintenance drug for nearly 3 years. I had a hard time with it, at the 10 mg level. It knocked my red, white, and platelet counts down -- generally below normal for both reds and whites. I never had neuropathy, though. I would take it for two weeks, then would be off for 3-4 weeks while my blood counts came back up. During that time, my M-spike reappeared and has been climbing very slowly. Since I'm still in an MGUS phase, my oncologist finally discontinued the Revlimid last year. It took a couple of months for my blood counts to stabilize, and my new "normal" for both red and white blood counts is at the very low end of the normal range, but I am much happier to be done with it. Eventually, I'll go back on something but right now, I am happy to be free of maintenance meds.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Having trouble with Revlimid; opinions?
Hi Bob, I was on 10mg Revlimid maintenance since July 2013. At the beginning of the therapy I had lot of itching especially in my scalp. My doctors suggested I take Revlimid once in 3 days and gradually increased the frequency - basically for my body to get used to it. Within a couple of weeks I could tolerate Revlimid. I was taking Revlimid regularly everyday without much of an issue for over 6 months ( apart from mild/moderate constipation ). Two weeks back I started experiencing neuropathy - tingling and pain in both feet. My doctor reduced the dose to 5 mg but I couldn’t handle the lower dose too. I am currently off any medication since the past 1 week. I am feeling much better now, the pain and the tingling has reduced after I stopped Revlimid. Waiting for my doctor appointment to see what the next course of action would be.
I had experienced severe neuropathic pain in my feet earlier too - Dec’2012, one month post chemo (Revlimid+Dex+Velcade) . I was put on Neurontin (Gabapentin) then, adjusting the dose based on the severity of the pain. The pain reduced in a month and had gradually stopped in 3 months.
Hope you feel better soon ... Good Luck !
I had experienced severe neuropathic pain in my feet earlier too - Dec’2012, one month post chemo (Revlimid+Dex+Velcade) . I was put on Neurontin (Gabapentin) then, adjusting the dose based on the severity of the pain. The pain reduced in a month and had gradually stopped in 3 months.
Hope you feel better soon ... Good Luck !
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sv25 - Who do you know with myeloma?: self
- When were you/they diagnosed?: August 2012
- Age at diagnosis: 34
Re: Having trouble with Revlimid; opinions?
I had a SCT in September 2012 and started Revlimid maintenance in December 2012. Settled on 10mg 21 days on 7 off. I had some issues with low white counts so there were times we'd extend the days off. In October/November my eosinphils went crazy high and it was discovered it was caused by the Revlimid. We discontinued use, I remain inCR and feel so much better. I'm very active and the Revlimid really affected my cardio and I was really fatigued . Glad to be off the drug.
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mso - Name: Mic
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Sept 2010
- Age at diagnosis: 53
Re: Having trouble with Revlimid; opinions?
I've been on 10 mg Revlimid for 16 months. Deal with some cramping and intestinal issues. No neuropathy to speak of. Blood counts have been great so far and remain in CR. Had my SCT in June of 2012.
However, chemo brain seems to be getting worse. Here's a perfect example, I completely forgot to mention it in this post and had to come back and add it.
However, chemo brain seems to be getting worse. Here's a perfect example, I completely forgot to mention it in this post and had to come back and add it.
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Having trouble with Revlimid; opinions?
Bob,
I have been on Revlimid maintenance for about two years now. I was started on 10mg every day with no breaks and latter was switched to 10mg three weeks on then one week off. For most of that time my biggest complication has been low blood counts across the board. Because of low WBC I find that I get sick easier and have a hard time getting over an infection.
Though my RBC and hemoglobin are low I seem to have adapted to it. I still bike and swim a lot. This last summer I did an 18 mile round trip hike up to the top of Half Dome in Yosemite without too much difficulty.
But then there are periods of time when I can feel pretty wiped out and fatigued. When things are good I do a lot, when they are not I get my rest. I can say that I am feeling more energetic than I did in the months and year before being diagnosed with myeloma, when I likely had myeloma but did not know it.
When my blood work showed a positive immunofixation my Revlimid dosage was raised to 15mg. I had been tolerating 10mg better than most people so I thought that I would not have any problems with 15mg. I found it hit me harder than I was expecting. My WBC count went down further and I ended up with two ear infections, sinusitis, and bronchitis which took a while to get over. I also felt more tired. After about three cycles at 15 mg it was decided to lower my dosage back down to 10mg for now.
About the same time I came realize that the residual neuropathy I had from my Velcade treatment two years ago has been slowly getting worse over the year. After being off Velcade for about six month the neuropathy left used to be mostly in the ends of both my feet but now it feel it almost up to my knee again. My neurologist took a sharp object and ran it from my ankle up to near my knee along the side of my leg. I could only tell it was sharp when it got close to my knee. I also have trouble feeling really hot or really cold in my lower legs. I also have some neuropathy returning in my hands.
I have seen my oncologist about all this and for now we decided to watch and monitor me more closely. If the side effects from Revlimid get worse we will look other options including other drugs such as Kyprolis, pomalidomide [Pomalyst], or even stopping maintenance therapy and watching very closely how the disease reacts. He wants to avoid getting into a full relapse situation.
As for mind fog or chemo brain, I may have that but I really cannot tell. Sometimes others say they see some effect in my at times. I know when I came home from my SCT two years ago I could hardly sign my signature when writing a check. My reading concentration was almost none existent. In the next few months while I was not on any chemo and had not started maintenance chemo all this cleared up gradually. I still think I am doing pretty well in this regard.
I have been on Revlimid maintenance for about two years now. I was started on 10mg every day with no breaks and latter was switched to 10mg three weeks on then one week off. For most of that time my biggest complication has been low blood counts across the board. Because of low WBC I find that I get sick easier and have a hard time getting over an infection.
Though my RBC and hemoglobin are low I seem to have adapted to it. I still bike and swim a lot. This last summer I did an 18 mile round trip hike up to the top of Half Dome in Yosemite without too much difficulty.
But then there are periods of time when I can feel pretty wiped out and fatigued. When things are good I do a lot, when they are not I get my rest. I can say that I am feeling more energetic than I did in the months and year before being diagnosed with myeloma, when I likely had myeloma but did not know it.
When my blood work showed a positive immunofixation my Revlimid dosage was raised to 15mg. I had been tolerating 10mg better than most people so I thought that I would not have any problems with 15mg. I found it hit me harder than I was expecting. My WBC count went down further and I ended up with two ear infections, sinusitis, and bronchitis which took a while to get over. I also felt more tired. After about three cycles at 15 mg it was decided to lower my dosage back down to 10mg for now.
About the same time I came realize that the residual neuropathy I had from my Velcade treatment two years ago has been slowly getting worse over the year. After being off Velcade for about six month the neuropathy left used to be mostly in the ends of both my feet but now it feel it almost up to my knee again. My neurologist took a sharp object and ran it from my ankle up to near my knee along the side of my leg. I could only tell it was sharp when it got close to my knee. I also have trouble feeling really hot or really cold in my lower legs. I also have some neuropathy returning in my hands.
I have seen my oncologist about all this and for now we decided to watch and monitor me more closely. If the side effects from Revlimid get worse we will look other options including other drugs such as Kyprolis, pomalidomide [Pomalyst], or even stopping maintenance therapy and watching very closely how the disease reacts. He wants to avoid getting into a full relapse situation.
As for mind fog or chemo brain, I may have that but I really cannot tell. Sometimes others say they see some effect in my at times. I know when I came home from my SCT two years ago I could hardly sign my signature when writing a check. My reading concentration was almost none existent. In the next few months while I was not on any chemo and had not started maintenance chemo all this cleared up gradually. I still think I am doing pretty well in this regard.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Having trouble with Revlimid; opinions?
I find myself in agreement with many here and other searched threads. Last week I insisted on a meeting with my oncologist to discuss dropping Revlimid. He is a great doctor and set it up.
I'm in PR with a flat graph line for 2 years at M spike 2Cnd/0.2US, tested bi-monthly. We discussed the growing move to utilize Revlimid for two years and then stop. When I went on he said it was common to consider Revlimid for the duration of maintenance. He noted the medical community is considering alternatives now. With my symptoms and consistent numbers we decided to stop Revlimid and monitor my numbers.
I have been clean of the stuff since Jan. 22 and am feeling much better already with just a couple weeks. I'll update next month when we know my M spike number.
I think a mild fitness program will be next as my vigour returns.
I'm in PR with a flat graph line for 2 years at M spike 2Cnd/0.2US, tested bi-monthly. We discussed the growing move to utilize Revlimid for two years and then stop. When I went on he said it was common to consider Revlimid for the duration of maintenance. He noted the medical community is considering alternatives now. With my symptoms and consistent numbers we decided to stop Revlimid and monitor my numbers.
I have been clean of the stuff since Jan. 22 and am feeling much better already with just a couple weeks. I'll update next month when we know my M spike number.
I think a mild fitness program will be next as my vigour returns.
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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: Having trouble with Revlimid; opinions?
I have been taking VRD since October of 2012. I have no real problems with Revlimid except when I stop taking it for a little while then, when I start back up, I will get a rash on my upper chest and head and my scalp will itch like crazy. This usually only lasts for a few days. So it's not too bad.
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gmarv54
9 posts
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