Happy New Year to all,
My husband started on Revlimid maintenance 10 mg everyday. I see some people are on Revlimid days 1-21 then off for 7.
I'm wondering if anyone knows the rationale for the dosage schedules. I tried to find a study to read regarding dosing but was unsuccessful.
I would love for my husband to take a week off if there is no advantage to everyday dosing.
Any input would be appreciated.
Thanks, Kerri
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8 posts
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Re: Revlimid maintenance dosing
Hi Kerri,
Revlimid is usually given 21 days out of 28, but that is at the discretion of the doctor. Personally, I appreciate having a week off of the drug, on the fourth week. That gives my system a break and a chance to be more normal. It is a 'new normal'! I have met other patients who take the drug continuously though, so there is some leeway here, and I think that you could discuss this with your doctor. There may be medical studies that back up giving the drug continuously, and this could be a difference between 'high risk' patients and 'normal risk' patients, but i am not sure about that.
Revlimid is usually given 21 days out of 28, but that is at the discretion of the doctor. Personally, I appreciate having a week off of the drug, on the fourth week. That gives my system a break and a chance to be more normal. It is a 'new normal'! I have met other patients who take the drug continuously though, so there is some leeway here, and I think that you could discuss this with your doctor. There may be medical studies that back up giving the drug continuously, and this could be a difference between 'high risk' patients and 'normal risk' patients, but i am not sure about that.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Revlimid maintenance dosing
I believe that the week off is designed to allow neutrophil levels to recover.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Revlimid maintenance dosing
Hi Kerri,
Good question! I don't exactly know the answer, but maybe what I've experienced can help you and your husband.
I began Revlimid maintenance in September 2013. I was started off at 10 mg/day everyday. After a couple months of tolerating that well, my doctor upped it to 15 mg/day everyday. Then about 8 months later, that was reduced back down to 10 mg/day everyday because of thrombocytopenia and neutropenia. I stayed at that dose until late this summer, when I started to have some heart issues. After a couple months off Revlimid, I was restarted at 5 mg/day for 21 days and off for 7 days. I'm tolerating that ok now.
I asked my doctor if we would ever increase the dosage again, and he said no. Fortunately, at all of these doses, Revlimid seems to be effective in keeping the myeloma knocked down. So far at least.
I think it's pretty common to start Revlimid maintenance at 10 mg/day everyday and then go up to 15 mg/day everyday if you can tolerate it. But in backing down, like they had to do with me, I'm not sure what drives the decision about reducing the daily dose vs. going to the 21 on / 7 off schedule.
When I had the 2-month break in the late summer, I definitely felt better being off Revlimid. But at the low dose I'm on now, I don't feel any different during my on weeks compared to my off week.
As far as studies looking at different Revlimid maintenance dosing protocols, that's another good question. I have not seen anything like that either. I'm in a clinical trial, and all of the doses I've gotten "qualify" as maintenance as far as the trial is concerned. I doubt the researchers will break the data down into the fine-grain analysis that would be necessary to compare different maintenance doses because this clinical trial is more concerned with other questions.
Hope that's at least a little bit of a help to you. Best wishes to you and your husband.
Mike
Good question! I don't exactly know the answer, but maybe what I've experienced can help you and your husband.
I began Revlimid maintenance in September 2013. I was started off at 10 mg/day everyday. After a couple months of tolerating that well, my doctor upped it to 15 mg/day everyday. Then about 8 months later, that was reduced back down to 10 mg/day everyday because of thrombocytopenia and neutropenia. I stayed at that dose until late this summer, when I started to have some heart issues. After a couple months off Revlimid, I was restarted at 5 mg/day for 21 days and off for 7 days. I'm tolerating that ok now.
I asked my doctor if we would ever increase the dosage again, and he said no. Fortunately, at all of these doses, Revlimid seems to be effective in keeping the myeloma knocked down. So far at least.
I think it's pretty common to start Revlimid maintenance at 10 mg/day everyday and then go up to 15 mg/day everyday if you can tolerate it. But in backing down, like they had to do with me, I'm not sure what drives the decision about reducing the daily dose vs. going to the 21 on / 7 off schedule.
When I had the 2-month break in the late summer, I definitely felt better being off Revlimid. But at the low dose I'm on now, I don't feel any different during my on weeks compared to my off week.
As far as studies looking at different Revlimid maintenance dosing protocols, that's another good question. I have not seen anything like that either. I'm in a clinical trial, and all of the doses I've gotten "qualify" as maintenance as far as the trial is concerned. I doubt the researchers will break the data down into the fine-grain analysis that would be necessary to compare different maintenance doses because this clinical trial is more concerned with other questions.
Hope that's at least a little bit of a help to you. Best wishes to you and your husband.
Mike
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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 dosing
I just finished my first induction cycle of Revlimid, Velcade, and dexamethasone (RVD). During my week off I developed a rash from my ankles to my knees on both legs. Was told it was from the 25 mg of daily Revlimid. A prescribed steroid gel got rid of it in 3 days. Waiting for a biopsy result to confirm it was the Revlimid.
My concern is that I will be continuing my 2nd cycle with just Velcade and. My M-spike went from 1.2 to 0.70 g/dL after just one cycle on RVD. I am very curious to see how much of a factor the Revlimid was in the reduction of my M-spike. If it continues to go down, I will be extremely happy, but if it doesn't, it will be back to the drawing board, which will be frustrating because I had the numbers falling as fast as the stock market using RVD.
My concern is that I will be continuing my 2nd cycle with just Velcade and. My M-spike went from 1.2 to 0.70 g/dL after just one cycle on RVD. I am very curious to see how much of a factor the Revlimid was in the reduction of my M-spike. If it continues to go down, I will be extremely happy, but if it doesn't, it will be back to the drawing board, which will be frustrating because I had the numbers falling as fast as the stock market using RVD.
Re: Revlimid maintenance dosing
Hello F C
The rash deal with Revlimid varies greatly from person to person. In some cases, the rash appears, and once you get into continuous treatment (or say subsequent rounds), it goes away by itself. Sometimes, but not always.
Sorry to put it this way, but if you just suck it up, it might be transient. Good luck.
The rash deal with Revlimid varies greatly from person to person. In some cases, the rash appears, and once you get into continuous treatment (or say subsequent rounds), it goes away by itself. Sometimes, but not always.
Sorry to put it this way, but if you just suck it up, it might be transient. Good luck.
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JPC - Name: JPC
Re: Revlimid maintenance dosing
That's so funny, I am trying to convince my doctor to keep using the Revlimid because it was so easy to remove the rash, but he is afraid of it being vasculitis, which can be dangerous if presented in the kidneys or other organs rather than on the legs.
Maybe I'll tell the doctor to suck it up! lol This disease has so many dimensions to it. It's basically impossible to find anyone with the exact experiences. It reminds me of that game where you drop a steel ball and it hits rows and rows of pegs on the way down until it hits the bottom and falls into a slot. It goes to the right, then left, then left again, then right, etc, while on the way down we have to hope it falls into the slot that reads "cure".
Maybe I'll tell the doctor to suck it up! lol This disease has so many dimensions to it. It's basically impossible to find anyone with the exact experiences. It reminds me of that game where you drop a steel ball and it hits rows and rows of pegs on the way down until it hits the bottom and falls into a slot. It goes to the right, then left, then left again, then right, etc, while on the way down we have to hope it falls into the slot that reads "cure".
Re: Revlimid maintenance dosing
Hello again F:
I have read a lot in the last year, but I am sure that your doctor has actually seen many more multiple myeloma patients than myself over many years. Still, like you said, it does sound funny that the doctor would go right to stopping the Rev at the first sign of a rash. That is the first time that I have read about that. I have heard of patients having a very bad rash that had gotten worse over time to the point that treatment would be altered, but you more frequently read that either the Rev strength is reduced, stopped for a while and restarted, or the rash is controlled with topical applications. And, as I have mentioned, you frequently hear with Rev a rash starts, and then goes down or goes away almost by itself as the body adjusts to it.
Maybe it is something about the look, the location, or the severity of the rash (and I am not familiar with vasculitis). I would repeat the question, though, given that you feel that the Rev worked, and your primary concern is getting the myeloma into remission, what could possibly be done?? One thing that comes to mind is Pomalyst. You are probably familiar with it, but if not, it's the next generation Rev. Even the older thalidomide might be an option, it might have other side effects, but not the troublesome rash. Both are Imids, in the same class of Rev. Another potential substitute for Rev is Cytoxan (CyBorD).
On the other hand, if you did one cycle with Vd alone, and then figured it out, and got back to a three-drug regimen, I would think that would not be the end of the world. Also, the older thinking was that the standard of care was 4 rounds. If you are tolerating the drugs well, and need a couple of extra rounds, and you have not plateaued, the newer way of thinking is to continue past four rounds to possibly get a chance to get to CR or MRD-.
Good luck.
I have read a lot in the last year, but I am sure that your doctor has actually seen many more multiple myeloma patients than myself over many years. Still, like you said, it does sound funny that the doctor would go right to stopping the Rev at the first sign of a rash. That is the first time that I have read about that. I have heard of patients having a very bad rash that had gotten worse over time to the point that treatment would be altered, but you more frequently read that either the Rev strength is reduced, stopped for a while and restarted, or the rash is controlled with topical applications. And, as I have mentioned, you frequently hear with Rev a rash starts, and then goes down or goes away almost by itself as the body adjusts to it.
Maybe it is something about the look, the location, or the severity of the rash (and I am not familiar with vasculitis). I would repeat the question, though, given that you feel that the Rev worked, and your primary concern is getting the myeloma into remission, what could possibly be done?? One thing that comes to mind is Pomalyst. You are probably familiar with it, but if not, it's the next generation Rev. Even the older thalidomide might be an option, it might have other side effects, but not the troublesome rash. Both are Imids, in the same class of Rev. Another potential substitute for Rev is Cytoxan (CyBorD).
On the other hand, if you did one cycle with Vd alone, and then figured it out, and got back to a three-drug regimen, I would think that would not be the end of the world. Also, the older thinking was that the standard of care was 4 rounds. If you are tolerating the drugs well, and need a couple of extra rounds, and you have not plateaued, the newer way of thinking is to continue past four rounds to possibly get a chance to get to CR or MRD-.
Good luck.
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JPC - Name: JPC
8 posts
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