Andrew,
Good point about mSMART. The NCCN also touches on maintenance for different situations in its updated 2016 guidelines and evidence publications.
I should have only stated that the IMWG has yet to issue a consensus statement with regard to maintenance guidelines.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Who should have Revlimid maintenance?
All:
Thank you so much to you all for your responses. My apologies for the delay in my response.
Nancy: I certainly agree that my body may have taken all the chemo that it can stand for awhile. I handled the induction and transplant so well, I was taken off guard when I had such a bad reaction to the Revlimid. I am very fortunate to live in the Baltimore area; I have 2 oncologists that specialize in multiple myeloma (both my regular oncologist, and what I call my stem cell doctor). Since they are both part of the same system, they work together very well.
Coach: I like the visual, however I have such a black and white type of personality, I guess this wasn't the best cancer for me to get ... lol. I am working on being less analytical.
I had my follow-up doctor visit Friday. He wants me to take a little longer vacation from the Revlimid, and did suggest that we either lower the dose, or stop altogether. Initially he wasn't sure whether it was the Revlimid, or still side effects from the transplant. We will make a final decision in two weeks when I get my Zometa.
One question he did not have an answer to was whether if I stay off Revlimid, and don't take it until I relapse, can I still expect the typical 17-month remission that they cite if you take it right after transplant? I realize that this cancer is very specific to an individual, but it's frustrating when there is so little data out there on these medications.
Thanks again for all your responses, you were a huge help.
Kathleen
Thank you so much to you all for your responses. My apologies for the delay in my response.
Nancy: I certainly agree that my body may have taken all the chemo that it can stand for awhile. I handled the induction and transplant so well, I was taken off guard when I had such a bad reaction to the Revlimid. I am very fortunate to live in the Baltimore area; I have 2 oncologists that specialize in multiple myeloma (both my regular oncologist, and what I call my stem cell doctor). Since they are both part of the same system, they work together very well.
Coach: I like the visual, however I have such a black and white type of personality, I guess this wasn't the best cancer for me to get ... lol. I am working on being less analytical.
I had my follow-up doctor visit Friday. He wants me to take a little longer vacation from the Revlimid, and did suggest that we either lower the dose, or stop altogether. Initially he wasn't sure whether it was the Revlimid, or still side effects from the transplant. We will make a final decision in two weeks when I get my Zometa.
One question he did not have an answer to was whether if I stay off Revlimid, and don't take it until I relapse, can I still expect the typical 17-month remission that they cite if you take it right after transplant? I realize that this cancer is very specific to an individual, but it's frustrating when there is so little data out there on these medications.
Thanks again for all your responses, you were a huge help.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Who should have Revlimid maintenance?
I'm currently 59 years old. I had MGUS for about 8 years, but last year my disease progressed to active myeloma due to low hemoglobin levels. My bone marrow biopsy indicates standard risk but I also had rising free light chain level, so I'm not sure how that qualifies me.
I also am coming up on the end of my induction therapy of Velcade, Revlimid, and dexamethasone. My doctor started me on 15 mg Revlimid, 2.1 Velcade (2x weekly), and 20 mg dex whenever I got the Velcade. After just two cycles (2 weeks on 1 off), my numbers were all within the normal range.
We kept it going for 4 cycles, then reduced to 10 mg Revlimid, 2.1 Velcade (1x weekly) and 20 mg dex with the Velcade.
I opted not to have an autologous stem cell transplant because I responded so well to the drugs and don't believe there was much benefit in going with the transplant.
The question now becomes maintenance. Specialist wants some kind of maintenance – maybe 10 mg Revlimid daily – but my oncologist isn't in the same camp. After consulting with other specialists, he believes maintenance may cause some resistance to Revlimid when we need it again. His point is that it worked so well with lower doses in a short period of time, let's just use it again if you relapse.
From what I read, there is not much difference in the studies between overall survival with or without maintenance, and there is always a risk of secondary cancer while on Revlimid. Maybe someone has different info on that. Would like to be off the drug totally but also want to do the right thing.
True enough that there are a lot of differing opinions – I have an oncologist, and have seen 3 specialists. I always thought more info was better than less.
I also am coming up on the end of my induction therapy of Velcade, Revlimid, and dexamethasone. My doctor started me on 15 mg Revlimid, 2.1 Velcade (2x weekly), and 20 mg dex whenever I got the Velcade. After just two cycles (2 weeks on 1 off), my numbers were all within the normal range.
We kept it going for 4 cycles, then reduced to 10 mg Revlimid, 2.1 Velcade (1x weekly) and 20 mg dex with the Velcade.
I opted not to have an autologous stem cell transplant because I responded so well to the drugs and don't believe there was much benefit in going with the transplant.
The question now becomes maintenance. Specialist wants some kind of maintenance – maybe 10 mg Revlimid daily – but my oncologist isn't in the same camp. After consulting with other specialists, he believes maintenance may cause some resistance to Revlimid when we need it again. His point is that it worked so well with lower doses in a short period of time, let's just use it again if you relapse.
From what I read, there is not much difference in the studies between overall survival with or without maintenance, and there is always a risk of secondary cancer while on Revlimid. Maybe someone has different info on that. Would like to be off the drug totally but also want to do the right thing.
True enough that there are a lot of differing opinions – I have an oncologist, and have seen 3 specialists. I always thought more info was better than less.
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Kebo - Name: Kebo
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 51
Re: Who should have Revlimid maintenance?
Hello Kebo:
Maintenance is for many people a judgement call, and patient desires for potentially being drug free impacts the decision. In your case, being standard risk, and having achieved complete response, those are two factors that argue that maintenance may be possibly be deferred. Did you have a bone marrow biopsy to confirm the response after induction? And did they measure residual disease by next generation flow? If you are minimal residual disease negative, that further supports the approach not to maintain.
The argument to maintain in your case would be that you deferred an autologous stem cell transplant at this time (you still could do one, if needed, down the road at first relapse, but I hope that's a long way off). Also keep in mind that you could maintain for a fixed duration, say one or two years. That is not quite as good in terms of the studies as maintenance to progression, but does provide at least a progression-free survival advantage.
Maintenance is for many people a judgement call, and patient desires for potentially being drug free impacts the decision. In your case, being standard risk, and having achieved complete response, those are two factors that argue that maintenance may be possibly be deferred. Did you have a bone marrow biopsy to confirm the response after induction? And did they measure residual disease by next generation flow? If you are minimal residual disease negative, that further supports the approach not to maintain.
The argument to maintain in your case would be that you deferred an autologous stem cell transplant at this time (you still could do one, if needed, down the road at first relapse, but I hope that's a long way off). Also keep in mind that you could maintain for a fixed duration, say one or two years. That is not quite as good in terms of the studies as maintenance to progression, but does provide at least a progression-free survival advantage.
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JPC - Name: JPC
Re: Who should have Revlimid maintenance?
JPC,
I didn't have a follow up bone marrow biopsy because my specialist and oncologist both thought the results wouldn't change my treatment. So I don't really know if I'm in complete response (CR) or minimal residual disease (MRD) negative. But all other blood work is now in normal ranges.
I am vexed with some neuropathy in my feet, which I would like to get rid of first if I do start some kind of maintenance. So maybe take a break from everything first, then go on maintenance. I'll have to weigh my options.
Thanks.
I didn't have a follow up bone marrow biopsy because my specialist and oncologist both thought the results wouldn't change my treatment. So I don't really know if I'm in complete response (CR) or minimal residual disease (MRD) negative. But all other blood work is now in normal ranges.
I am vexed with some neuropathy in my feet, which I would like to get rid of first if I do start some kind of maintenance. So maybe take a break from everything first, then go on maintenance. I'll have to weigh my options.
Thanks.
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Kebo - Name: Kebo
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 51
Re: Who should have Revlimid maintenance?
Kebo,
I think there is a lot of logic and good evidence to support your oncologist's recommendation -- more so, I dare say, than there is in the knee-jerk, pro-maintenance reaction of your specialist.
Your oncologist is looking at the great response you've gotten to treatment so far and is realizing that your prognosis is likely to be very good. In other words, you're likely to be around for a long time if you avoid a fatal infection or fatal secondary cancer.
So he's asking himself: Why should I subject the bone marrow of this patient to additional Revlimid therapy when it could lead to a permanent reduction in marrow function or, worse yet, a nasty secondary cancer like myelodysplastic syndrome or leukemia.
The secondary cancers would be bad, of course, but reduced marrow function would mean you'd be at increased risk of a potentially fatal infection for all those years you're going to be alive.
So his plan to take you off Revlimid, but make sure you try it out again at relapse, makes a lot of sense in terms of maximizing your quality and quantity of life in both the short and long term. Just don't forget to make sure Revlimid is part of whatever you're treated with at relapse.
Good luck!
P.S. - And, for those who may think otherwise, I'm fully aware of the latest meta analysis that Celgene paid to have done so there was a new study favoring Revlimid maintenance. Funny thing: the meta analysis draws on three studies, but only one of those studies on its own found a positive overall survival advantage in favor of Revlimid maintenance. That one study is also the one that many argue is the most flawed of the three studies.
I think there is a lot of logic and good evidence to support your oncologist's recommendation -- more so, I dare say, than there is in the knee-jerk, pro-maintenance reaction of your specialist.
Your oncologist is looking at the great response you've gotten to treatment so far and is realizing that your prognosis is likely to be very good. In other words, you're likely to be around for a long time if you avoid a fatal infection or fatal secondary cancer.
So he's asking himself: Why should I subject the bone marrow of this patient to additional Revlimid therapy when it could lead to a permanent reduction in marrow function or, worse yet, a nasty secondary cancer like myelodysplastic syndrome or leukemia.
The secondary cancers would be bad, of course, but reduced marrow function would mean you'd be at increased risk of a potentially fatal infection for all those years you're going to be alive.
So his plan to take you off Revlimid, but make sure you try it out again at relapse, makes a lot of sense in terms of maximizing your quality and quantity of life in both the short and long term. Just don't forget to make sure Revlimid is part of whatever you're treated with at relapse.
Good luck!
P.S. - And, for those who may think otherwise, I'm fully aware of the latest meta analysis that Celgene paid to have done so there was a new study favoring Revlimid maintenance. Funny thing: the meta analysis draws on three studies, but only one of those studies on its own found a positive overall survival advantage in favor of Revlimid maintenance. That one study is also the one that many argue is the most flawed of the three studies.
Re: Who should have Revlimid maintenance?
Hello again, Kebo:
When you mentioned that your numbers are all within normal range, I took it to mean that your main multiple myeloma markers were good. That is that the M-spike is zero, and the kappa-lambda ratio is normal or very close to normal (there are natural variations in this number).
Zero M-spike and normal kappa-lambda results generally means a complete response (CR). In some of the other centers, at the point of reaching CR, they may do another bone marrow biopsy to evaluate that there is no evidence of excessive plasma cells in the marrow (stringent complete response), and to possibly evaluate the status of minimal residual disease status by next generation flow cytometry (or other method).
In the minimum, I would suggest that they clarify for you whether or not you are in CR. That would be done based on blood tests alone. It is important I think for you to understand that. If I was mistaken in understanding your earlier post, and you are less than CR, that I think changes the thought process somewhat. Although not a perfect predictor, for standard risk, having a CR is quite a good place to be (probably not really needing maintenance), but less than a CR would argue more in favor of maintenance. Again, different doctors have differing opinions on this, as actually you mentioned with your two doctors, between your general oncologist being anti-maintenance, and your myeloma specialist being pro-maintenance.
I understand that some argue that since they do not yet have a firm "official" protocol on what exactly to do with MRD status, that some doctors do not think its important to measure it at the appropriate time. My non medical opinion, however, is that in a year or two, they may know better, so if you are at the point of going to zero M-spike, it is a good thing to have MRD evaluated. In my wife's case at Sloan Kettering in New York, their normal approach would be to evaluate MRD. Again, having a bone marrow biopsy is of course no fun, however, at key points, it is considered necessary.
There is no hard recommendation right now that if you are MRD positive you need maintenance, or if you are MRD negative, you do not. The knowledge, however, may inform the doctors and the patients as to the judgement call on this issue.
Good luck with your decision.
When you mentioned that your numbers are all within normal range, I took it to mean that your main multiple myeloma markers were good. That is that the M-spike is zero, and the kappa-lambda ratio is normal or very close to normal (there are natural variations in this number).
Zero M-spike and normal kappa-lambda results generally means a complete response (CR). In some of the other centers, at the point of reaching CR, they may do another bone marrow biopsy to evaluate that there is no evidence of excessive plasma cells in the marrow (stringent complete response), and to possibly evaluate the status of minimal residual disease status by next generation flow cytometry (or other method).
In the minimum, I would suggest that they clarify for you whether or not you are in CR. That would be done based on blood tests alone. It is important I think for you to understand that. If I was mistaken in understanding your earlier post, and you are less than CR, that I think changes the thought process somewhat. Although not a perfect predictor, for standard risk, having a CR is quite a good place to be (probably not really needing maintenance), but less than a CR would argue more in favor of maintenance. Again, different doctors have differing opinions on this, as actually you mentioned with your two doctors, between your general oncologist being anti-maintenance, and your myeloma specialist being pro-maintenance.
I understand that some argue that since they do not yet have a firm "official" protocol on what exactly to do with MRD status, that some doctors do not think its important to measure it at the appropriate time. My non medical opinion, however, is that in a year or two, they may know better, so if you are at the point of going to zero M-spike, it is a good thing to have MRD evaluated. In my wife's case at Sloan Kettering in New York, their normal approach would be to evaluate MRD. Again, having a bone marrow biopsy is of course no fun, however, at key points, it is considered necessary.
There is no hard recommendation right now that if you are MRD positive you need maintenance, or if you are MRD negative, you do not. The knowledge, however, may inform the doctors and the patients as to the judgement call on this issue.
Good luck with your decision.
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JPC - Name: JPC
Re: Who should have Revlimid maintenance?
Thanks to all for your replies and food for thought. I will revisit the bone marrow biopsy question with my oncologist and see what he thinks. By the way, I now have a zero M-spike.
Thanks again, your thoughts are greatly appreciated.
Thanks again, your thoughts are greatly appreciated.
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Kebo - Name: Kebo
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 51
Re: Who should have Revlimid maintenance?
Update:
Although I have no M-spike and all my numbers are in the normal range (except my immunoglobulin M, which is still low), I continue on Revlimid, Velcade, and dexamethasone treatment. Last week my oncologist lowered my Revlimid to 10 mg taken every other day due to foot neuropathy, which was becoming quite bothersome. Hopefully, this will provide some relief. By the way, I started on 15 mg Revlimid, then lowered to 10 mg due to neuropathy, now 10 mg every other day.
Although I have no M-spike and all my numbers are in the normal range (except my immunoglobulin M, which is still low), I continue on Revlimid, Velcade, and dexamethasone treatment. Last week my oncologist lowered my Revlimid to 10 mg taken every other day due to foot neuropathy, which was becoming quite bothersome. Hopefully, this will provide some relief. By the way, I started on 15 mg Revlimid, then lowered to 10 mg due to neuropathy, now 10 mg every other day.
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Kebo - Name: Kebo
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 51
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