Forums
Re: Revlimid maintenance and its side effects
Hello, Pebe2736. I am wondering whether you get your Velcade through IV or by subcutaneous injection.
Re: Revlimid maintenance and its side effects
Update:
I have been on a 10 mg per day, 21 day cycle now for over two years. During that time, I never got a single bug: no flu, no colds, not even asthma. I have remained in remission, too; doing very, very well, I thought.
Oh, my life sorta changed a bit; nothing I didn't get used to. I had a month where my temperature was between 90-100 degrees every night, and I got that 'crawly/fevery feeling." I reported it, and was told not to worry; a fever doesn't 'count' unless it's over a 101. .
Except of course that my NORMAL temp is about 97.6, so for me, a temperature of 100 is the equivalent of 101 in someone whose normal temp is 98.6. Still, the doc said 'don't worry,' so I didn't, and that was the only time I had that problem anyway.
I had some very mild tingling in my hands, and my feet 'burned,'...nothing to worry about, I was told. I had a tremor in my left hand.
Then of course there was the fatigue...but I learned to work around that. I would wake up, get as much of my 'stuff' done in the morning as I could, and figure that afternoons were for quiet stuff. If I went to Disneyland with my kids, I rented a scooter so that I wouldn't have to bug out and take a nap half way through the day. It all worked out...and people with scooters get all sorts of bennies at Disneyland. it all worked out.
I got a rash two or three times, but some cortixone cream took care of it.
I never had the 'dire rear' that is supposed to be so common (Thank you!!!)
About three months ago I noticed that my ankles and feet were very swollen, especially my right ankle and foot. I was told that, well, my kidneys were probably giving me grief and to wear compression stockings. Nobody mentioned the possibility of DVT's....
In other words, I got a lot of pats on the head and 'don't worry about it" statements. It's not like I complain about this stuff a lot; I don't. I breeze into the oncologist's office every other month for five minutes, send him an e-mail once a month to remind him about the Revlimid prescription, and that's about it.
OK...so.
At the end of July my father had a very serious gall bladder attack; he's ninety, it was an emergency, and the surgery for it was extensive and serious. I was the one who took him to the ER...and I didn't wear a mask. So I got sick. Not for long, mind you; I ran a nasty fever for one day and in five days I was fine. However, my oncologist decided that because of the stress of caring for my parents and MY getting some sort of bug, he wanted me to skip a full cycle of Revlimid.
Holy cow.
By the end of that month, in spite of being the sole caretaker of two invalid parents, I was feeling GREAT. No fatigue. No rashes.No tingling. Cool feet. Energy up the ying yang....and no, zip, NO, edema. I was, er, feeling absolutely on top of the planet; my 'tired' was an 'honest' tired, due to hard work and cured by a good night's sleep.
Then I began taking Revlimid again, and...here I am. All the side effects that had been sneaking up on me over the last two years landed on me like a plane crash. I'm right back to my 'new normal.'
None of those side effects, by themselves. would be enough to ruin my life or get me to stop taking Revlimid, but all of them together, now that I know what's causing them? I'm feeling a little depressed.
I have been on a 10 mg per day, 21 day cycle now for over two years. During that time, I never got a single bug: no flu, no colds, not even asthma. I have remained in remission, too; doing very, very well, I thought.
Oh, my life sorta changed a bit; nothing I didn't get used to. I had a month where my temperature was between 90-100 degrees every night, and I got that 'crawly/fevery feeling." I reported it, and was told not to worry; a fever doesn't 'count' unless it's over a 101. .
Except of course that my NORMAL temp is about 97.6, so for me, a temperature of 100 is the equivalent of 101 in someone whose normal temp is 98.6. Still, the doc said 'don't worry,' so I didn't, and that was the only time I had that problem anyway.
I had some very mild tingling in my hands, and my feet 'burned,'...nothing to worry about, I was told. I had a tremor in my left hand.
Then of course there was the fatigue...but I learned to work around that. I would wake up, get as much of my 'stuff' done in the morning as I could, and figure that afternoons were for quiet stuff. If I went to Disneyland with my kids, I rented a scooter so that I wouldn't have to bug out and take a nap half way through the day. It all worked out...and people with scooters get all sorts of bennies at Disneyland. it all worked out.
I got a rash two or three times, but some cortixone cream took care of it.
I never had the 'dire rear' that is supposed to be so common (Thank you!!!)
About three months ago I noticed that my ankles and feet were very swollen, especially my right ankle and foot. I was told that, well, my kidneys were probably giving me grief and to wear compression stockings. Nobody mentioned the possibility of DVT's....
In other words, I got a lot of pats on the head and 'don't worry about it" statements. It's not like I complain about this stuff a lot; I don't. I breeze into the oncologist's office every other month for five minutes, send him an e-mail once a month to remind him about the Revlimid prescription, and that's about it.
OK...so.
At the end of July my father had a very serious gall bladder attack; he's ninety, it was an emergency, and the surgery for it was extensive and serious. I was the one who took him to the ER...and I didn't wear a mask. So I got sick. Not for long, mind you; I ran a nasty fever for one day and in five days I was fine. However, my oncologist decided that because of the stress of caring for my parents and MY getting some sort of bug, he wanted me to skip a full cycle of Revlimid.
Holy cow.
By the end of that month, in spite of being the sole caretaker of two invalid parents, I was feeling GREAT. No fatigue. No rashes.No tingling. Cool feet. Energy up the ying yang....and no, zip, NO, edema. I was, er, feeling absolutely on top of the planet; my 'tired' was an 'honest' tired, due to hard work and cured by a good night's sleep.
Then I began taking Revlimid again, and...here I am. All the side effects that had been sneaking up on me over the last two years landed on me like a plane crash. I'm right back to my 'new normal.'
None of those side effects, by themselves. would be enough to ruin my life or get me to stop taking Revlimid, but all of them together, now that I know what's causing them? I'm feeling a little depressed.
-
dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Revlimid maintenance and its side effects
I am not longer on Revlimid maintenance but my experience while I was on it for two years was very much like Dianaid’s. I could have written the same thing about me except I never had any rashes and also had no GI issues. My normal temp is also about 97.6 and I would occasionally get low-grade fevers. If my temp went over 100, I would go into to local urgent care and often get an antibiotic prescription regardless if I had bacterial or viral infection just to be safe given the unusual circumstances of the drug treatments I was on and my immune system. I also experienced some increase in the neuropathy over time I already had from earlier Velcade treatment. If I got a diagnosed with some respiratory or other infection, my oncologist would stop my Revlimid maintenance until I recovered. The times I was off Revlimid I also experienced the lifting of the mental fog and I have heard a number of other people say the same thing. The fatigue and fog seem to creep in slowly when starting Revlimid and I really did not notice how much it was affecting me until the times I would stop the drug.
I do not know there is much that can be done about these side effects. I see it as all about risk vs reward. The reason I did the maintenance therapy was the clinical trials that showed longer progression-free survival and possibly overall survival as well. Clearly a drug with these kind if side effects would not be approved for use unless it was not believed it would prolong life. This is just a pain relief medication like aspirin.
Dianaiad,
It was interesting nobody mentioned to you the possibility of DVT, they should have. It was mentioned to me and I was told to also take a baby aspirin everyday while on Revlimid. The warnings about Revlimid and DVT where in the written drug warnings etc. that I received with every Revlimid prescription delivered to me. I have learned to read all those directions that come with my prescriptions.
I do not know there is much that can be done about these side effects. I see it as all about risk vs reward. The reason I did the maintenance therapy was the clinical trials that showed longer progression-free survival and possibly overall survival as well. Clearly a drug with these kind if side effects would not be approved for use unless it was not believed it would prolong life. This is just a pain relief medication like aspirin.
Dianaiad,
It was interesting nobody mentioned to you the possibility of DVT, they should have. It was mentioned to me and I was told to also take a baby aspirin everyday while on Revlimid. The warnings about Revlimid and DVT where in the written drug warnings etc. that I received with every Revlimid prescription delivered to me. I have learned to read all those directions that come with my prescriptions.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Revlimid maintenance and its side effects
That was my error, Eric...yes, I have been told about DVT's...the warnings on Revlimid talk about it, People HERE talk about it, my pharmacist did, and it was mentioned by my oncologist, as well.
What I meant by "nobody mentioned DVT's to me" is that when I showed up with the edema, especially when one leg was swollen more than the other, the assumption was that it was fluid retention caused by kidney problems, and the doc didn't even consider any other thing.
It was as if, even though my chart was in front of him and I told him that I was on Revlimid, that this was irrelevant. You get swelling, it's your kidneys, stop eating salt and wear compression stockings, end of discussion.
Sometimes I have to wonder; there's that old medical saw about 'when you hear hoofbeats, think horses, not zebras."
But we, you, me and all the other myeloma patients here, caught a zebra. We not only caught the zebra, we managed to snag the only burgundy and pink striped one in the herd. It's here. We are indeed RIDING the thing, and so, when WE get edema, the chances that the 'hoofbeats' might be something unusual (like a DVT) are a bit higher than for the guy riding the normal horse.
Ah, well. I'm sorry...right now I'm feeling frustrated and I really don't have any reason to be, considering how much better off I am than many others who share this...er...colorful zebra with me.
What I meant by "nobody mentioned DVT's to me" is that when I showed up with the edema, especially when one leg was swollen more than the other, the assumption was that it was fluid retention caused by kidney problems, and the doc didn't even consider any other thing.
It was as if, even though my chart was in front of him and I told him that I was on Revlimid, that this was irrelevant. You get swelling, it's your kidneys, stop eating salt and wear compression stockings, end of discussion.
Sometimes I have to wonder; there's that old medical saw about 'when you hear hoofbeats, think horses, not zebras."
But we, you, me and all the other myeloma patients here, caught a zebra. We not only caught the zebra, we managed to snag the only burgundy and pink striped one in the herd. It's here. We are indeed RIDING the thing, and so, when WE get edema, the chances that the 'hoofbeats' might be something unusual (like a DVT) are a bit higher than for the guy riding the normal horse.
Ah, well. I'm sorry...right now I'm feeling frustrated and I really don't have any reason to be, considering how much better off I am than many others who share this...er...colorful zebra with me.
-
dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Revlimid maintenance and its side effects
Dianaiad,
Was the doc that examined you for the swollen legs your oncologist or was it an urgent care or emergency room doctor, or a routine office appointment? I am assuming that since it can take some time to get an appointment with oncology, and that DVT is life threating and requires immediate action, if you thought you were having DVT you would go straight to the ER. I am currently on full-dose pomalidomide, which has the same blood clot cautions of Revlimid. I have told my friends and coworkers about this and that if I am showing any signs of stroke to get me to the nearest ER as soon as possible. And if I thought I was experiencing DVT, I would do the same.
From my experience with going to urgent care over the last 4 years since my myeloma diagnosis, I have learned that while all the doctors knew what myeloma was, they all had little experience with myeloma and often I was the first patient they ever had in front of them who had it. I suspect the side effects of the drugs used to treat myeloma they were even less experienced with. I fully expect to have to be the one to bring up the drugs I am on, the known sides effects to an urgent care or even possibly to an ER physician. I doubt they would know these up front. Would they have the time to go back to the office and look them up? Unless I brought their attention to it, I doubt an urgent care physician would, and ER doctor more likely but I really do not know.
I can say I had one visit to urgent care where the doctor did beep and call my oncologist to discuss my case and this was after 8:00 pm. I believe many of medical record systems used in examination rooms can be used to look up the side effects drugs so this really should not be hard to do once they are made aware of them.
In you case you did bring up you were on Revlimid and I assume the possibility of blood clots, I assume your doctor was right about the edema, but I would think that to alleviate your concerns if the doctor did not feel you were in a DVT situation he/she would be able to explain more specifically to you why he/she felt it was not DVT.
It is frustrating, but I remember what it was like to be in the hospital with stage three myeloma, in kidney failure, and barely able to walk because of screaming back pain. I have been in that it can be a lot worse situation and that really sucks. I do all this to try not getting into that situation again for a long as I can.
Best wishes and hope you can find some improvement,
Eric
Was the doc that examined you for the swollen legs your oncologist or was it an urgent care or emergency room doctor, or a routine office appointment? I am assuming that since it can take some time to get an appointment with oncology, and that DVT is life threating and requires immediate action, if you thought you were having DVT you would go straight to the ER. I am currently on full-dose pomalidomide, which has the same blood clot cautions of Revlimid. I have told my friends and coworkers about this and that if I am showing any signs of stroke to get me to the nearest ER as soon as possible. And if I thought I was experiencing DVT, I would do the same.
From my experience with going to urgent care over the last 4 years since my myeloma diagnosis, I have learned that while all the doctors knew what myeloma was, they all had little experience with myeloma and often I was the first patient they ever had in front of them who had it. I suspect the side effects of the drugs used to treat myeloma they were even less experienced with. I fully expect to have to be the one to bring up the drugs I am on, the known sides effects to an urgent care or even possibly to an ER physician. I doubt they would know these up front. Would they have the time to go back to the office and look them up? Unless I brought their attention to it, I doubt an urgent care physician would, and ER doctor more likely but I really do not know.
I can say I had one visit to urgent care where the doctor did beep and call my oncologist to discuss my case and this was after 8:00 pm. I believe many of medical record systems used in examination rooms can be used to look up the side effects drugs so this really should not be hard to do once they are made aware of them.
In you case you did bring up you were on Revlimid and I assume the possibility of blood clots, I assume your doctor was right about the edema, but I would think that to alleviate your concerns if the doctor did not feel you were in a DVT situation he/she would be able to explain more specifically to you why he/she felt it was not DVT.
It is frustrating, but I remember what it was like to be in the hospital with stage three myeloma, in kidney failure, and barely able to walk because of screaming back pain. I have been in that it can be a lot worse situation and that really sucks. I do all this to try not getting into that situation again for a long as I can.
Best wishes and hope you can find some improvement,
Eric
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Revlimid maintenance and its side effects
I'm just now restarting Revlimid after a two-month break. And I completely relate to what Dianaiad and Eric H said.
After being on Revlimid maintenance for 22 months, I'd gotten used to its side effects for me. Mostly fatigue where I felt like I needed to take a short nap most afternoons. And diarrhea. Tons of diarrhea. Some of the mental fogginess that Eric mentioned, though that wasn't as bad as in previous phases of my treatment. And some muscle cramps. But I learned how to lives with these side effects, and they became my "new normal."
I was so used to those side effects that I was a little surprised when one day about a week after stopping Revlimid, I realized I felt powered up, extra good. Very cool! I kept hoping the diarrhea would stop, and it finally did about a month after I stopped Revlimid. I was surprised that it took that long because the half life of Revlimid is just a couple of days, if I recall correctly.
Anyway, I restarted Revlimid Friday, and already I'm back to the afternoon fatigue and diarrhea. Darn.
So, Dianaiad, I understand how you're feeling. Hang in there.
Mike
After being on Revlimid maintenance for 22 months, I'd gotten used to its side effects for me. Mostly fatigue where I felt like I needed to take a short nap most afternoons. And diarrhea. Tons of diarrhea. Some of the mental fogginess that Eric mentioned, though that wasn't as bad as in previous phases of my treatment. And some muscle cramps. But I learned how to lives with these side effects, and they became my "new normal."
I was so used to those side effects that I was a little surprised when one day about a week after stopping Revlimid, I realized I felt powered up, extra good. Very cool! I kept hoping the diarrhea would stop, and it finally did about a month after I stopped Revlimid. I was surprised that it took that long because the half life of Revlimid is just a couple of days, if I recall correctly.
Anyway, I restarted Revlimid Friday, and already I'm back to the afternoon fatigue and diarrhea. Darn.
So, Dianaiad, I understand how you're feeling. Hang in there.
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Revlimid maintenance and its side effects
Dr. Jason Valent wrote:
Is this the the 'IVIG' Dr. Valent is referring to?
https://en.wikipedia.org/wiki/Intravenous_immunoglobulin
Have not heard of this before. Is it a common treatment for myeloma patients? How often do you get it? Maybe it could be good for my shingles instead of continuous acyclovir? My IgG and IgM are below normal (IgA is high, due to myeloma).
RT
If the immunoglobulin levels are low (IgG below 500 with recurrent infections is my not so hard and fast rule) I use supplemental IVIG to try and minimize the risk of infections. There is some debate as to the utility of the IVIG but given your symptoms, this would be something to discuss with your physician.
Is this the the 'IVIG' Dr. Valent is referring to?
https://en.wikipedia.org/wiki/Intravenous_immunoglobulin
Have not heard of this before. Is it a common treatment for myeloma patients? How often do you get it? Maybe it could be good for my shingles instead of continuous acyclovir? My IgG and IgM are below normal (IgA is high, due to myeloma).
RT
-
RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Revlimid maintenance and its side effects
Dianaida - 'riding the zebra' ... ha, ha .. yep, that's us. Could make a good book title.
Eric - you are working full-time while on full-strength pomalidomide? There is no chance in hell I could do that, assuming it's even close to 'full strength' Revlimid in its 'brain fog' side effects. Pat K. suggests pomalidomide can be worse than Revlimid for its mental effects. How are you finding it?
Peace to us all, on our 'pharmaceutical rides'. Just got off my first 10-day Neupogen ride. Holy crap, that's a powerful drug.
RT
Eric - you are working full-time while on full-strength pomalidomide? There is no chance in hell I could do that, assuming it's even close to 'full strength' Revlimid in its 'brain fog' side effects. Pat K. suggests pomalidomide can be worse than Revlimid for its mental effects. How are you finding it?
Peace to us all, on our 'pharmaceutical rides'. Just got off my first 10-day Neupogen ride. Holy crap, that's a powerful drug.
RT
-
RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Revlimid maintenance and its side effects
Hi RT,
IVIG is used for people that have compromised immune systems. It is expensive so I know the insurance companies make the doctors show the need for it. I used it for 4 months after my allo. I never had any infection, so I guess it seemed to work for me. There are some others here that have mentioned having used it as well.
Mark
IVIG is used for people that have compromised immune systems. It is expensive so I know the insurance companies make the doctors show the need for it. I used it for 4 months after my allo. I never had any infection, so I guess it seemed to work for me. There are some others here that have mentioned having used it as well.
Mark
-
Mark11
Re: Revlimid maintenance and its side effects
I was curious about the long-term effectiveness and side effects of Revlimid maintenance and I revisited this thread after almost a year. I was following the discussion on this topic out of curiosity last year when I was transitioning from the induction phase to the maintenance phase. It seems that there have been no updates or new posts on this thread for almost a year.
I recently read all the 29 posts on this thread and the first thing that I realized was Eric Hofacket's posts. Eric's posts were very informative and all of us are going to miss him. His posts will remain a great reference for many other myeloma patients like me, always.
I have nonsecretory IgG kappa multiple myeloma. I have 'settled down' in my Revlimid maintenance and my kappa and kappa-lambda ratios have been stable. My treatment transitioned from the induction phase to the maintenance phase about a year ago, first stopping the weekly Velcade shots and dropping the weekly 20 mg dex 3 months thereafter.
My kappa readings rose from the 12.5 mg/dL level to about 30 mg/dL levels for about 5 months right after stopping the weekly dex and while trying to optimize the Revlimid dose. First I got the Revlimid rash on the 11th day (of the 21 days on and 7 days off cycle) and my oncologist asked me to use it every other day. A 10 mg dose was tried for 21 days on, 7 days off. My kappa readings rose from the few 12.5 mg/dL level to about 30 mg/dL and the kappa-lambda ratio rose from around 1.1 to about 1.9, but came down to about 1.5 during these 5 months.
However, the 21-day on dose of 10 mg was making me pretty tired and I asked my oncologist if I could try the alternate day 20 mg dose. That has been quite tolerable for me, so far, for almost 6 months. However, my kappa readings rose almost immediately to about 40 mg/dL in May, but have remained stable and between 38 and 42 for the past 5 months and the kappa-lambda ratio is stable at a 'normal' 1.6. My oncologist has advised me that I could 'live with these kappa and the kappa-lambda levels' for a long time.
I am managing almost all my routine activities with minimal tiredness (drowsiness and sore muscles) in the afternoon on the day after I take my Revlimid. Generally I can continue my activities if I keep busy and avoid any big meals. I seem to have minimal GI issues, too. And I have not had any unusual problems getting a good 6 hours of sleep. I do think that I have to struggle to recall some names and a few other items buried in the memory but no real 'mental fogginess', so far.
However, I wonder if these (the kappa and the K/L ratio) readings will remain stable and if the side effects will worsen over time. The fatigue got much worse during the induction phase after the 5th or 6th cycle.
There has been no recent discussion on this topic for almost a year, and I would appreciate some updates as to how others are doing on the Revlimid maintenance since a year ago.
Has anybody added dex to supplement the Revlimid or made any other changes? Have there been any significant changes in the side effects over time? Any guidance on how long can one tolerate the Revlimid and how long would it remain effective?
I use the Ensure once in a while, more for a late night quick meal than for any energy boost. Is any energy drink helpful when one feels tired and drowsy with a body ache?
I recently read all the 29 posts on this thread and the first thing that I realized was Eric Hofacket's posts. Eric's posts were very informative and all of us are going to miss him. His posts will remain a great reference for many other myeloma patients like me, always.
I have nonsecretory IgG kappa multiple myeloma. I have 'settled down' in my Revlimid maintenance and my kappa and kappa-lambda ratios have been stable. My treatment transitioned from the induction phase to the maintenance phase about a year ago, first stopping the weekly Velcade shots and dropping the weekly 20 mg dex 3 months thereafter.
My kappa readings rose from the 12.5 mg/dL level to about 30 mg/dL levels for about 5 months right after stopping the weekly dex and while trying to optimize the Revlimid dose. First I got the Revlimid rash on the 11th day (of the 21 days on and 7 days off cycle) and my oncologist asked me to use it every other day. A 10 mg dose was tried for 21 days on, 7 days off. My kappa readings rose from the few 12.5 mg/dL level to about 30 mg/dL and the kappa-lambda ratio rose from around 1.1 to about 1.9, but came down to about 1.5 during these 5 months.
However, the 21-day on dose of 10 mg was making me pretty tired and I asked my oncologist if I could try the alternate day 20 mg dose. That has been quite tolerable for me, so far, for almost 6 months. However, my kappa readings rose almost immediately to about 40 mg/dL in May, but have remained stable and between 38 and 42 for the past 5 months and the kappa-lambda ratio is stable at a 'normal' 1.6. My oncologist has advised me that I could 'live with these kappa and the kappa-lambda levels' for a long time.
I am managing almost all my routine activities with minimal tiredness (drowsiness and sore muscles) in the afternoon on the day after I take my Revlimid. Generally I can continue my activities if I keep busy and avoid any big meals. I seem to have minimal GI issues, too. And I have not had any unusual problems getting a good 6 hours of sleep. I do think that I have to struggle to recall some names and a few other items buried in the memory but no real 'mental fogginess', so far.
However, I wonder if these (the kappa and the K/L ratio) readings will remain stable and if the side effects will worsen over time. The fatigue got much worse during the induction phase after the 5th or 6th cycle.
There has been no recent discussion on this topic for almost a year, and I would appreciate some updates as to how others are doing on the Revlimid maintenance since a year ago.
Has anybody added dex to supplement the Revlimid or made any other changes? Have there been any significant changes in the side effects over time? Any guidance on how long can one tolerate the Revlimid and how long would it remain effective?
I use the Ensure once in a while, more for a late night quick meal than for any energy boost. Is any energy drink helpful when one feels tired and drowsy with a body ache?
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
34 posts
• Page 3 of 4 • 1, 2, 3, 4
Return to Treatments & Side Effects