Can anyone please tell me their experience with Revlimid?
Thanks
Forums
Re: Your experience with Revlimid?
Revlimid makes me feel tired, my feet and hands swell, difficulty in breathing and on some days feel disorientated. It lowers your immune system and I have a severe outbreak of shingles. I know it affects patients in different ways. Think age has a lot to do with it.
In talking to other patients when I go in for Velcade, they all suffer to some extent with the above side effects.
Stay positive and good luck.
Tom 74
In talking to other patients when I go in for Velcade, they all suffer to some extent with the above side effects.
Stay positive and good luck.
Tom 74
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Your experience with Revlimid?
I was on Revlimid for induction therapy prior to a stem cell transplant in February of 2013. I have been on it since then as a maintenance drug. Apart from low lymphocyte counts and slightly low red blood counts, I have no side effects that I've noticed.
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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: Your experience with Revlimid?
My mom, age 65, has been on Revlimid and dex for 1 month. For now just some fatigue, constipation and back pain.
Hope it doesn't build up in the system and gets worse with time.
Best.
Maro
Hope it doesn't build up in the system and gets worse with time.
Best.
Maro
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Your experience with Revlimid?
My husband was on it with Velcade and dex during induction with no issues.
After transplant, about 100 days post, he went on reduced dosage of 10 mg only for maintenance. That was about 4 cycles ago.
So far he tolerates it fine except for low WBC but not low enough that doctors want him off. Plus he has recently had a rising eosinophils percentage, which he never had before. Doctors said it's probably some new minor allergic reaction even though he has no rash or anything. But we will keep eye on it. Otherwise he feels fatigue setting in around the 3rd week but nothing that stops him from doing anything. So far!
After transplant, about 100 days post, he went on reduced dosage of 10 mg only for maintenance. That was about 4 cycles ago.
So far he tolerates it fine except for low WBC but not low enough that doctors want him off. Plus he has recently had a rising eosinophils percentage, which he never had before. Doctors said it's probably some new minor allergic reaction even though he has no rash or anything. But we will keep eye on it. Otherwise he feels fatigue setting in around the 3rd week but nothing that stops him from doing anything. So far!
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: Your experience with Revlimid?
I've been on 10 mg for 21 days with 7 days off for two and a half years now, and the side effects seem to be mild and 'live with-able."
I have some minor peripheral neuropathy, some fatigue, had some edema which comes and goes, and of course I'm a little careful because Revlimid messes with the immune system.
Nothing I can't handle once I figure out what's causing which. I have simply learned how to adjust. For one thing, I'm one of those for whom Revlimid causes insomnia, so I take it in the morning. I do all my really active stuff in the mornings.
I think I'm pretty lucky so far with Revlimid, and since I AM in 'complete remission" (no M-spike and really good lab numbers) although I"m also 'high risk' with the del(17p) thing, I'll keep taking it as long as that remission lasts.
I can handle a little nap in the afternoon.
Some people have harder times with Revlimid, though. I'm really grateful that I'm doing well on it.
I have some minor peripheral neuropathy, some fatigue, had some edema which comes and goes, and of course I'm a little careful because Revlimid messes with the immune system.
Nothing I can't handle once I figure out what's causing which. I have simply learned how to adjust. For one thing, I'm one of those for whom Revlimid causes insomnia, so I take it in the morning. I do all my really active stuff in the mornings.
I think I'm pretty lucky so far with Revlimid, and since I AM in 'complete remission" (no M-spike and really good lab numbers) although I"m also 'high risk' with the del(17p) thing, I'll keep taking it as long as that remission lasts.
I can handle a little nap in the afternoon.
Some people have harder times with Revlimid, though. I'm really grateful that I'm doing well on it.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Your experience with Revlimid?
I took Revlimid 15 mg 21 days on / 7 days off and dex 40 mg once a week for 8 cycles prior to an autologous stem cell transplant (ASCT). It was hard at the time to tease out what side effects were from which drug, other than the normal dex side effects. During that time, I had wicked cramping in my legs, back, abdomen and hands. The legs, back and abdomen happened at night and often would come hourly throughout the night and last for up to 15 minutes at a 10+ pain level. They usually happened about 2-3 days after my dex dose.
After my ASCT I was drug free for almost 3 years. When I relapsed I restarted on Revlimid 15 mg 21 days / 7 days off and dex 20 mg once a week. The first month I had some itching in my scalp. No cramping this time. That regimen served me well for 1 1/2 years. Then my cell counts tanked and I had a 1 month vacation from the Revlimid to see if my counts would recover. They did. When I restarted Revlimid my dose was decreased to 10 mg 21 / 7. I didn't have any problems for 10 months when I started to have problems with chronic diarrhea. My dose was then decreased to 10 mg every other day 21 / 7. The diarrhea isn't as constant and responds well to Imodium when it is bad.
Other than the above problems, I have more fatigue than I did prior to treatment, which could be from the drugs and from the myeloma. I also developed multiple clots in my lungs in May this year even though I was taking aspirin on a daily basis as a preventive.
Nancy in Phila
After my ASCT I was drug free for almost 3 years. When I relapsed I restarted on Revlimid 15 mg 21 days / 7 days off and dex 20 mg once a week. The first month I had some itching in my scalp. No cramping this time. That regimen served me well for 1 1/2 years. Then my cell counts tanked and I had a 1 month vacation from the Revlimid to see if my counts would recover. They did. When I restarted Revlimid my dose was decreased to 10 mg 21 / 7. I didn't have any problems for 10 months when I started to have problems with chronic diarrhea. My dose was then decreased to 10 mg every other day 21 / 7. The diarrhea isn't as constant and responds well to Imodium when it is bad.
Other than the above problems, I have more fatigue than I did prior to treatment, which could be from the drugs and from the myeloma. I also developed multiple clots in my lungs in May this year even though I was taking aspirin on a daily basis as a preventive.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Your experience with Revlimid?
Hi,
During my Revlimid, Velcade, dex induction I had a blood clot in my right leg even though I was injecting 40 mg of Lovenox (enoxaparin) per day. Since I was in a wheelchair or bed and not very mobile, the Revlimid blood clot issue became very real.
Now that I am on 10 mg maintenance and more mobile, I am able to mitigate this risk with a low dose aspirin.
Other side effects I have seen but have not persisted are itching, dry and peeling skin, spasms.
The most persistent side effects for me are fatigue and thirst.
And then of course the ridiculous price that Celgene charges for this which in my case comes to 10 thousand dollars per month billed to my insurance. Absurd in my opinion.
Best! BN
During my Revlimid, Velcade, dex induction I had a blood clot in my right leg even though I was injecting 40 mg of Lovenox (enoxaparin) per day. Since I was in a wheelchair or bed and not very mobile, the Revlimid blood clot issue became very real.
Now that I am on 10 mg maintenance and more mobile, I am able to mitigate this risk with a low dose aspirin.
Other side effects I have seen but have not persisted are itching, dry and peeling skin, spasms.
The most persistent side effects for me are fatigue and thirst.
And then of course the ridiculous price that Celgene charges for this which in my case comes to 10 thousand dollars per month billed to my insurance. Absurd in my opinion.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Your experience with Revlimid?
Wow, thank you all for your responses.
It seems like a pretty scary drug. The blood clots seem very scary. The other side effects seem pretty bad too. How do you feel most days? I pray for everyone with this terrible disease. This relapse has been very hard to take. The last 2 months have been very hard already for my mom. I pray she is strong enough to handle these side effects of this new drug and that it works.
Thanks again for all your information.
It seems like a pretty scary drug. The blood clots seem very scary. The other side effects seem pretty bad too. How do you feel most days? I pray for everyone with this terrible disease. This relapse has been very hard to take. The last 2 months have been very hard already for my mom. I pray she is strong enough to handle these side effects of this new drug and that it works.
Thanks again for all your information.
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debbiew
Re: Your experience with Revlimid?
I was only on 10 mg Revlimid for 3 cycles and it destroyed my entire digestive system from one end to the other. Horrible mouth sores and uncontrollable diarrhea. I lost 45 lbs before I got it under control.
I am now on Velcade only, 1 shot every 2 weeks.
Charlie (grouchy German)
I am now on Velcade only, 1 shot every 2 weeks.
Charlie (grouchy German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
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