Been on Revlimid 25 mg and dex for about 3 years. During the last 3 months, the IgA has gone from 124 to 165 (still normal range), kappa light chain from 21.4 to 25.1 (barely above normal), ratio from 6 to 9.3, and urine m-spike from 0 to 44 mg/24 hrs.
Doctor says we should stop the Revlimid / dex because the uptrend indicates the regimen isn't doing anything. Says we will re-check in 6 weeks to see if the numbers remain stable or shoot up. Doctor says it is beneficial to have a treatment free period and see what the numbers do.
First of all, while the numbers indicate an uptrend, they do not meet the IMWG definition of relapse (there are no CRAB features present).
Secondly, I'm worried that we are not maximizing the benefit of Revlimid / dexamethasone if we stop it before progression.
Does anyone have any opinions on this strategy? It's almost as if we are stopping the Revlimid / dexamethasone to find out if it was still providing a benefit.
Thoughts?
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Re: Stopping Revlimid maintenance prior to progression?
It seems to me what you are describing is a serologic relapse (relapse based on your M-spike or free light chain results, with NO CRAB features). Many doctors would just continue to monitor closely (no treatment) with PET/CT scans, or bone marrow biopsies. However, many would try a new combination of drugs. It is not a black and white answer.
Good luck and please keep us posted.
Good luck and please keep us posted.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Stopping Revlimid maintenance prior to progression?
Coach, thanks for the reply.
Obviously, when a patient relapses, it is time to switch therapies. As I pointed out in the original post, however, these numbers aren't even close to meeting the definition of relapse, whether it be serologic or symptomatic.
The doctor's reasoning seemed to be "the numbers are trending up, which means Revlimid is no longer is working." My thought, though, is maybe the numbers are inching up but perhaps Revlimid may be keeping the dam from breaking and could continue to do so for some time.
So, I'm looking for an upside of doing things this way. Maybe this will help retain some future sensitivity to future combos containing Revlimid? Maybe a drug-free interval will help improve immunoparesis and bone marrow function? Maybe the Revlimid wasn't doing much, and the numbers may stay below the definition of relapse for some time?
I need help understanding the logic here.
Obviously, when a patient relapses, it is time to switch therapies. As I pointed out in the original post, however, these numbers aren't even close to meeting the definition of relapse, whether it be serologic or symptomatic.
The doctor's reasoning seemed to be "the numbers are trending up, which means Revlimid is no longer is working." My thought, though, is maybe the numbers are inching up but perhaps Revlimid may be keeping the dam from breaking and could continue to do so for some time.
So, I'm looking for an upside of doing things this way. Maybe this will help retain some future sensitivity to future combos containing Revlimid? Maybe a drug-free interval will help improve immunoparesis and bone marrow function? Maybe the Revlimid wasn't doing much, and the numbers may stay below the definition of relapse for some time?
I need help understanding the logic here.
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Perseverance - When were you/they diagnosed?: 2010
Re: Stopping Revlimid maintenance prior to progression?
I'm sorry you aren't getting more responses to your situation (somebody above my pay grade).
I do know that you would get a multitude of different suggestions,from many different sources after you've answered many questions - like:
Again good luck and keep us posted.
I, for one, am interested in following your story.
I do know that you would get a multitude of different suggestions,from many different sources after you've answered many questions - like:
- What was your initial treatment?
- Did you have a stem cell transplant?
- How were you originally diagnosed?
- How well are you tolerating the treatments?
- Do you have any other major health issues?
Again good luck and keep us posted.
I, for one, am interested in following your story.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Stopping Revlimid maintenance prior to progression?
Good morning Perseverance and Coach Hoke:
OK, Coach, I will pick up the gauntlet and comment. This is one of the so called "controversies" in myeloma, without consensus from the leading experts, but I will give a couple of thoughts. I had recently commented on a very similar question to TBR regarding thalidomide maintenance. Very roughly and in gross approximation, I observed that an "expected" duration of first remission for no maintenance is about 24 to 30 months, for maintenance to progression, it's about 48 to 54 months, and I speculated that for two years maintenance, it's about halfway between. These of course are gross averages, and unless you think you are the "average", then an individual's numbers could be grossly different.
For Perseverance, there are a couple of fine points that raise a question or two.
First off, you have a urine M-spike but not a serum M-spike? Quite frankly, I don't even know what that means.
Second, your doctor had you on 25 mg Revlimid plus dex. That is more of an induction dosage, rather than on a maintenance dosage. I am wondering, maybe you are on a non-transplant or transplant ineligible tract?? If that is the case, then in my opinion you have not been on "maintenance" in the most common meaning of the word; that case I have heard termed "continuous therapy" (just trying to clarify the issue and not trying to nitpick your wording).
In any case, the argument for continuing is to delay progression. The argument for stopping is to get the benefit of a drug holiday, and even though the myeloma may be advancing, it's still at a low level, and your body can get some benefit from the holiday to handle the next round of induction, whenever that is.
As I mentioned to TBR, there are a couple of clinical trials out there (not a huge amount) that you could look at, and the good news is that there are better drugs available now at first relapse. I do think it's important that at first relapse you do bring into the mix the newer more active drugs, which have a possibility of making the next remission as long as the first one.
Good luck to you.
OK, Coach, I will pick up the gauntlet and comment. This is one of the so called "controversies" in myeloma, without consensus from the leading experts, but I will give a couple of thoughts. I had recently commented on a very similar question to TBR regarding thalidomide maintenance. Very roughly and in gross approximation, I observed that an "expected" duration of first remission for no maintenance is about 24 to 30 months, for maintenance to progression, it's about 48 to 54 months, and I speculated that for two years maintenance, it's about halfway between. These of course are gross averages, and unless you think you are the "average", then an individual's numbers could be grossly different.
For Perseverance, there are a couple of fine points that raise a question or two.
First off, you have a urine M-spike but not a serum M-spike? Quite frankly, I don't even know what that means.
Second, your doctor had you on 25 mg Revlimid plus dex. That is more of an induction dosage, rather than on a maintenance dosage. I am wondering, maybe you are on a non-transplant or transplant ineligible tract?? If that is the case, then in my opinion you have not been on "maintenance" in the most common meaning of the word; that case I have heard termed "continuous therapy" (just trying to clarify the issue and not trying to nitpick your wording).
In any case, the argument for continuing is to delay progression. The argument for stopping is to get the benefit of a drug holiday, and even though the myeloma may be advancing, it's still at a low level, and your body can get some benefit from the holiday to handle the next round of induction, whenever that is.
As I mentioned to TBR, there are a couple of clinical trials out there (not a huge amount) that you could look at, and the good news is that there are better drugs available now at first relapse. I do think it's important that at first relapse you do bring into the mix the newer more active drugs, which have a possibility of making the next remission as long as the first one.
Good luck to you.
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JPC - Name: JPC
5 posts
• Page 1 of 1
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