Good to see the discussion going on here.
On the question of why Velcade maintenance isn't more common, I think there are at least two reasons.
First, there is a natural inclination to favor oral drugs for maintenance because of the convenience factor. Taking an oral drug at home is considered easier for patients to do than requiring them to go to an infusion center once or twice a week.
Second, until the advent of subcutaneous Velcade in recent years, and also with greater use of less-intensive (less frequent) Velcade dosing regimens, I think it was difficult for patients to be on Velcade for extended periods of time due to side effects, particularly peripheral neuropathy.
Forums
Re: NEJM article on transplantation & Revlimid maintenance
No; I've been on 2.5 mg for almost a year and it is a little more tolerable for me than the 5.0. But I still have diarrhea, insomnia, fatigue and bad taste, but my numbers are all good.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: NEJM article on transplantation & Revlimid maintenance
Good discussion.
Regarding:
If I knew that subcutaneous (subq) Velcade might be more effective than Revlimid for maintenance, I would gladly take on doing self-injections of Velcade (as Coop does), provided it didn't cause me any PN issues. Correct me if I'm wrong, but I think patients generally figure out pretty early on whether Velcade is causing them PN issues, right? Or, am I off-base about this assumption?
Let's assume for the moment that PN issues become clear early on when using subq Velcade and would likely only be temporary if you start with a low dose and catch it very early on (this is my impression, but again am I off-base here?). I would then be willing to take on an experiment to see if Velcade caused me PN issues. I think I would also likely know going into maintenance if Velcade was an issue for me PN-wise if I used it as part of my induction regimen (although my front-line treatment may not necessarily be Velcade-based).
But the real question is whether Revlimid or Velcade-based maintenance would tend to do a better job from an OS standpoint? ... OS stats are what generally drives my thinking, not PFS stats. I know that one of my specialists uses Velcade as an option for his recommended maintenance regimens, but I've never had a reason to discuss the details of why he would recommend Velcade over some other drug (other than he has mentioned to me several times his ongoing concern regarding Revlimid's potential secondary cancer risk).
I also wonder if ixazomib (MLN9708) (an oral proteasome inhibitor in clinical trial that is similar to Velcade and also apparently has a lower incidence of PN) will change the maintenance landscape, should it get approved?
On a slightly different note, the drug companies must also be incredibly excited about the prospect of having continuous maintenance become a more common recommendation for multiple myeloma patients. I have to imagine that would result in an unbelievably huge increase in sales for them, perhaps even more than having an altogether new multiple myeloma drug approved?
Regarding:
On the question of why Velcade maintenance isn't more common, I think there are at least two reasons.
First, there is a natural inclination to favor oral drugs for maintenance because of the convenience factor. Taking an oral drug at home is considered easier for patients to do than requiring them to go to an infusion center once or twice a week.
Second, until the advent of subcutaneous Velcade in recent years, and also with greater use of less-intensive (less frequent) Velcade dosing regimens, I think it was difficult for patients to be on Velcade for extended periods of time due to side effects, particularly peripheral neuropathy
If I knew that subcutaneous (subq) Velcade might be more effective than Revlimid for maintenance, I would gladly take on doing self-injections of Velcade (as Coop does), provided it didn't cause me any PN issues. Correct me if I'm wrong, but I think patients generally figure out pretty early on whether Velcade is causing them PN issues, right? Or, am I off-base about this assumption?
Let's assume for the moment that PN issues become clear early on when using subq Velcade and would likely only be temporary if you start with a low dose and catch it very early on (this is my impression, but again am I off-base here?). I would then be willing to take on an experiment to see if Velcade caused me PN issues. I think I would also likely know going into maintenance if Velcade was an issue for me PN-wise if I used it as part of my induction regimen (although my front-line treatment may not necessarily be Velcade-based).
But the real question is whether Revlimid or Velcade-based maintenance would tend to do a better job from an OS standpoint? ... OS stats are what generally drives my thinking, not PFS stats. I know that one of my specialists uses Velcade as an option for his recommended maintenance regimens, but I've never had a reason to discuss the details of why he would recommend Velcade over some other drug (other than he has mentioned to me several times his ongoing concern regarding Revlimid's potential secondary cancer risk).
I also wonder if ixazomib (MLN9708) (an oral proteasome inhibitor in clinical trial that is similar to Velcade and also apparently has a lower incidence of PN) will change the maintenance landscape, should it get approved?
On a slightly different note, the drug companies must also be incredibly excited about the prospect of having continuous maintenance become a more common recommendation for multiple myeloma patients. I have to imagine that would result in an unbelievably huge increase in sales for them, perhaps even more than having an altogether new multiple myeloma drug approved?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: NEJM article on transplantation & Revlimid maintenance
One reason Velcade is used more than Revlimid both for induction and maintainance is that insurance covers the cost of Velcade and often does not cover Revlimid. In my case I originally had no drug coverage, so I would have to pay out of pocket about $500.00 per pill every day for the Revlimid, but my medical insurance would pay for my Velcade. (I never took any medication for my first 70 years, so who would have thought that I would ever need drug coverage).
Also, Multibilly, you are right that you know that the PN is coming from the Velcade.
Also, Multibilly, you are right that you know that the PN is coming from the Velcade.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: NEJM article on transplantation & Revlimid maintenance
FYI.
Revlimid surpasses Velcade, Velcade leads frontline, Revlimid highest in maintenance.
(from Bernstein Financial Analyst Report re: Amgen and Celgene, at InvestorVillage, February 2014)
For the first time in our survey, this year Revlimid surpassed Velcade with respect to penetration in all multiple myeloma patients: Revlimid's overall share was 50% versus 45% for Velcade. Revlimid's share in frontline patients increased from 50% in 2012 to 58% in 2013, significantly narrowing the gap to Velcade, which remains the number one prescribed agent in frontline multiple myeloma (69% share in 2013 versus 71% in 2012).
In addition, Revlimid's penetration in the maintenance population grew from 65% in 2012 to 71% in 2013, consistent with the 70% in 2011. Velcade's share of multiple myeloma patients getting maintenance therapy remained virtually unchanged from 2012 to 2013, at ~30%. Both these products saw decreases in share of second- and third-line multiple myeloma as Kyprolis and Pomalyst gained some traction with physicians in these lines.
Revlimid surpasses Velcade, Velcade leads frontline, Revlimid highest in maintenance.
(from Bernstein Financial Analyst Report re: Amgen and Celgene, at InvestorVillage, February 2014)
For the first time in our survey, this year Revlimid surpassed Velcade with respect to penetration in all multiple myeloma patients: Revlimid's overall share was 50% versus 45% for Velcade. Revlimid's share in frontline patients increased from 50% in 2012 to 58% in 2013, significantly narrowing the gap to Velcade, which remains the number one prescribed agent in frontline multiple myeloma (69% share in 2013 versus 71% in 2012).
In addition, Revlimid's penetration in the maintenance population grew from 65% in 2012 to 71% in 2013, consistent with the 70% in 2011. Velcade's share of multiple myeloma patients getting maintenance therapy remained virtually unchanged from 2012 to 2013, at ~30%. Both these products saw decreases in share of second- and third-line multiple myeloma as Kyprolis and Pomalyst gained some traction with physicians in these lines.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: NEJM article on transplantation & Revlimid maintenance
Hi Multibilly,
You asked the following question:
"I also wonder how low-dose Revlimid became the seemingly default maintenance drug of choice as opposed to low-dose Velcade, etc?"
and that's the question I attempted to explain. Your question was not: "What should be the preferred maintenance drug NOW, given what we know now, and given the options that are available now?". Thus, my answer was not intended to address that question.
Moreover, what we decide here about what should have have been the best maintenance drug in the past, given the information that was available at that time, doesn't matter. What matters is what physicians thought was important, and what they perceived the efficacy and side effects to be of the relevant maintenance options, not what we here might think should have been important, or what their perceptions should have been.
Also, when thinking about maintenance therapy, it's important to bear in mind that it follows after induction therapy and, often, stem cell transplantation. A physician in the past, looking at a patient who may have had 3 or 4 cycles of intensive Velcade (or RVD) induction therapy, and then a stem cell transplant, could quite reasonably have been concerned about the possibility of peripheral neuropathy developing, or getting worse, with IV Velcade as a maintenance option. So they might reasonably have considered oral Revlimid as a good maintenance alternative.
All of this sets aside the fact that there have been few major studies of Velcade as maintenance therapy, while there have been three or four major studies looking at Revlimid as maintenance therapy. (One could also argue that there have been few major studies of Velcade as maintenance therapy precisely because, until recently, it was not considered a particularly attractive option for maintenance therapy.)
Again, all of this is about what happened in the past (which is what you asked about). It is not about what would be best for maintenance therapy now, or in the future -- or even if or when maintenance therapy is a good idea.
You asked the following question:
"I also wonder how low-dose Revlimid became the seemingly default maintenance drug of choice as opposed to low-dose Velcade, etc?"
and that's the question I attempted to explain. Your question was not: "What should be the preferred maintenance drug NOW, given what we know now, and given the options that are available now?". Thus, my answer was not intended to address that question.
Moreover, what we decide here about what should have have been the best maintenance drug in the past, given the information that was available at that time, doesn't matter. What matters is what physicians thought was important, and what they perceived the efficacy and side effects to be of the relevant maintenance options, not what we here might think should have been important, or what their perceptions should have been.
Also, when thinking about maintenance therapy, it's important to bear in mind that it follows after induction therapy and, often, stem cell transplantation. A physician in the past, looking at a patient who may have had 3 or 4 cycles of intensive Velcade (or RVD) induction therapy, and then a stem cell transplant, could quite reasonably have been concerned about the possibility of peripheral neuropathy developing, or getting worse, with IV Velcade as a maintenance option. So they might reasonably have considered oral Revlimid as a good maintenance alternative.
All of this sets aside the fact that there have been few major studies of Velcade as maintenance therapy, while there have been three or four major studies looking at Revlimid as maintenance therapy. (One could also argue that there have been few major studies of Velcade as maintenance therapy precisely because, until recently, it was not considered a particularly attractive option for maintenance therapy.)
Again, all of this is about what happened in the past (which is what you asked about). It is not about what would be best for maintenance therapy now, or in the future -- or even if or when maintenance therapy is a good idea.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: NEJM article on transplantation & Revlimid maintenance
Boris,
You are absolutely right about the way I phrased my question and I agree with what you've said.
Given that there are steps that one can now take to deal with the historic drawbacks of Velcade as a maintenance drug, I will at least be discussing Velcade (and other drugs) as a maintenance option with my doc, should I ever get to that point. I might very well learn that the docs I work with also all believe that Revlimid may be the best maintenance choice from a purely PFS and OS standpoint.
Tying this back into the original article, the question still remains what the optimum maintenance period is for a patient? This just seems to be yet another area where the multiple myeloma medical community seems to be fairly well divided ... which is unfortunate for all of us.
You are absolutely right about the way I phrased my question and I agree with what you've said.
Given that there are steps that one can now take to deal with the historic drawbacks of Velcade as a maintenance drug, I will at least be discussing Velcade (and other drugs) as a maintenance option with my doc, should I ever get to that point. I might very well learn that the docs I work with also all believe that Revlimid may be the best maintenance choice from a purely PFS and OS standpoint.
Tying this back into the original article, the question still remains what the optimum maintenance period is for a patient? This just seems to be yet another area where the multiple myeloma medical community seems to be fairly well divided ... which is unfortunate for all of us.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: NEJM article on transplantation & Revlimid maintenance
Thanks Boris and Multibilly,
The question remains what is the "best" drug, what dose, and how long should one be on maintainance. And then the second best, and the third.
Coach Hoke
The question remains what is the "best" drug, what dose, and how long should one be on maintainance. And then the second best, and the third.
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: NEJM article on transplantation & Revlimid maintenance
Interesting discussion.
Coach Hoke - "The question remains what is the "best" drug, what dose, and how long should one be on maintainance. And then the second best, and the third."
Presentations of myeloma are so much different that it is impossible to ever say what the "best" maintenance drug is, or what the ideal duration of maintenance therapy is, and apply that to all patients. My read is that calling all of us "myeloma patients" is the equivalent of grouping all leukemia patients as having "leukemia" and treating them all the same way.
For example, doctors treat patients with chronic myeloid leukemia very differently that they do acute myeloid leukemia. You and I are a great example of the difference in "myeloma patients". You appear to be a more "typical" myeloma patient - late 60's / early 70's with standard risk disease. I was diagnosed in my early 40's with high risk disease. IMO, we should not be treated the same way.
Multibilly - My month long vacation must have changed my thinking, as I actually agree with one of your points above!
In the non-allo setting I agree with that point, since so few patients in the non-allo setting do not relapse.
Since the majority of maintenance studies show no (or minimal) OS benefit along with higher toxicities for patients taking maintenance, IMO it really should be up to the patient if they take maintenance.
I have seen some patients say they would be afraid to go off maintenance. They should stay on it.
For me, quality of life is very important, so I choose to enjoy an excellent QOL during my drug free remission. I am also very confident that my donor immune system will keep me in remission, so it is really an easy decision for me not to do any drug maintenance.
Unfortunately most myeloma patients are at a much higher risk of relapse than I am at this point, so continuous therapy helps them feel they are doing something to prevent relapse and helps them mentally.
Mark
Coach Hoke - "The question remains what is the "best" drug, what dose, and how long should one be on maintainance. And then the second best, and the third."
Presentations of myeloma are so much different that it is impossible to ever say what the "best" maintenance drug is, or what the ideal duration of maintenance therapy is, and apply that to all patients. My read is that calling all of us "myeloma patients" is the equivalent of grouping all leukemia patients as having "leukemia" and treating them all the same way.
For example, doctors treat patients with chronic myeloid leukemia very differently that they do acute myeloid leukemia. You and I are a great example of the difference in "myeloma patients". You appear to be a more "typical" myeloma patient - late 60's / early 70's with standard risk disease. I was diagnosed in my early 40's with high risk disease. IMO, we should not be treated the same way.
Multibilly - My month long vacation must have changed my thinking, as I actually agree with one of your points above!
But the real question is whether Revlimid or Velcade-based maintenance would tend to do a better job from an OS standpoint? ... OS stats are what generally drives my thinking, not PFS stats.
In the non-allo setting I agree with that point, since so few patients in the non-allo setting do not relapse.
Tying this back into the original article, the question still remains what the optimum maintenance period is for a patient? This just seems to be yet another area where the multiple myeloma medical community seems to be fairly well divided ... which is unfortunate for all of us.
Since the majority of maintenance studies show no (or minimal) OS benefit along with higher toxicities for patients taking maintenance, IMO it really should be up to the patient if they take maintenance.
I have seen some patients say they would be afraid to go off maintenance. They should stay on it.
For me, quality of life is very important, so I choose to enjoy an excellent QOL during my drug free remission. I am also very confident that my donor immune system will keep me in remission, so it is really an easy decision for me not to do any drug maintenance.
Unfortunately most myeloma patients are at a much higher risk of relapse than I am at this point, so continuous therapy helps them feel they are doing something to prevent relapse and helps them mentally.
Mark
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Mark11
Re: NEJM article on transplantation & Revlimid maintenance
This is an interesting discussion. I have heard it said in talks by myeloma specialists that especially for 'high risk' patients, continuous therapy should be recommended. Unfortunately, 'maintenance' is not recognized as a status for treatment in Canada, although of course, relapse or drug resistance (to change drugs) is. So, our oncologists have to work around these definitions for treatment of patients. Myeloma Canada is tackling the issue of 'maintenance' now actually, as an advocacy issue.
Maybe some of you could find the ASH papers that recommended 'continuous therapy, or maintenance therapy' for high risk patients? Thanks.
Maybe some of you could find the ASH papers that recommended 'continuous therapy, or maintenance therapy' for high risk patients? Thanks.
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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
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