I have lambda light chain multiple myeloma, and I am on my last 2 days of my first course of Revlimid maintenance (10 mg; 21 days on, 7 days off), no dexamethasone.
I have had debilitating fatigue, dizziness, nausea, headaches, back and joint pain. I was hoping to be able to return to work, but have not been able to because of the side effects.
I started maintenance after a successful autologous stem cell transplant (ASCT) in which I achieved a stringent complete response (sCR), and I am also minimal residual disease (MRD) negative.
I have been trying to find the criteria for requiring maintenance treatment, but have not been able to find anything that explains why some patients need it, and others do not.
Can someone help me find what criteria are used by the myeloma community in recommending maintenance therapy?
Forums
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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?
kshornber,
There is no currently agreed-upon consensus statement from the International Myeloma Working Group (IMWG) or any other medical body on whether to recommend maintenance therapy or not, let alone its duration or even which drug to use for maintenance. So, it really is up to the discretion of the specialist on whether to recommend maintenance or not.
Have you discussed changing your dose and/or schedule, or using a different agent, or simply eliminating maintenance?
There is no currently agreed-upon consensus statement from the International Myeloma Working Group (IMWG) or any other medical body on whether to recommend maintenance therapy or not, let alone its duration or even which drug to use for maintenance. So, it really is up to the discretion of the specialist on whether to recommend maintenance or not.
Have you discussed changing your dose and/or schedule, or using a different agent, or simply eliminating maintenance?
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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?
My husband received the same outcome from his autologous stem cell transplant (ASCT). His myeloma specialist is recommending consolidation treatment with 3 months of cyclophosphamide, Velcade, and dexamethasone (CyBorD, the same as his 4 months of induction chemo) to give the myeloma an "extra kick in the butt" as he put it, and then Velcade every other week for maintenance. This is due to him having the p14 gene deletion. Good luck to you.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Who should have Revlimid maintenance?
Hello KS:
I quickly reviewed some of your earlier posts and see that you expressed light chains primarily at initial diagnosis. Some doctors I had read consider that to be somewhat higher risk than M-spike dominated multiple myeloma. Maybe that is the reason your doctor feels strongly for maintenance, and I think it may have some justification.
On the other hand, you are in minimal residual disease (MRD) negative status. Recent studies seem to show that some individuals do well, regardless of whether or not they maintain, when in MRD negative. This I think is an open question that will be studied in the futures, as to what is the appropriate way to maintain when MRD negative, and if it is really required at all. This issue has been discussed in the past, recently by MMFeb15,16, as well as many others.
I think that you should discuss with your doctor to alter the maintenance and find some regimen that is tolerable for you. Another option would be take a maintenance holiday for a while, and let your body recover. And of course another option would be to discontinue it. I have heard, however, that the whole idea of maintenance is that it should be tolerable for the patient.
Good luck to you.
I quickly reviewed some of your earlier posts and see that you expressed light chains primarily at initial diagnosis. Some doctors I had read consider that to be somewhat higher risk than M-spike dominated multiple myeloma. Maybe that is the reason your doctor feels strongly for maintenance, and I think it may have some justification.
On the other hand, you are in minimal residual disease (MRD) negative status. Recent studies seem to show that some individuals do well, regardless of whether or not they maintain, when in MRD negative. This I think is an open question that will be studied in the futures, as to what is the appropriate way to maintain when MRD negative, and if it is really required at all. This issue has been discussed in the past, recently by MMFeb15,16, as well as many others.
I think that you should discuss with your doctor to alter the maintenance and find some regimen that is tolerable for you. Another option would be take a maintenance holiday for a while, and let your body recover. And of course another option would be to discontinue it. I have heard, however, that the whole idea of maintenance is that it should be tolerable for the patient.
Good luck to you.
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JPC - Name: JPC
Re: Who should have Revlimid maintenance?
Thank you all so much for your responses.
Multibilly: Thanks for confirming for me that there doesn't seem to be any hard and fast rules on maintenance, I have tried to keep up on all your posts, you seem to have a depth of knowledge that is hard to find. I did ask about lowering my dosage to 5 mg, but the response was that typically a dosage that low was used for patients with kidney issues. I would love to eliminate maintenance altogether, but am frankly terrified that I would be adversely affecting my overall survival.
Dogmom: My induction treatment was similar to your husband's, but I had 6 rounds of CyborD, which put me in a complete response, with little side effects, I would be happy to go back on that treatment. I will most definitely ask my doctor the next time I see him, if this course of treatment would be possible. May I ask what type of myeloma your husband has?
JPC: I was originally diagnosed as standard risk, I believe mainly because of the 13q del under FISH. I have noticed that many myeloma patients have been put on Velcade maintenance every other week. I handled the Velcade very well in induction, so I am wondering if I could go back on that for maintenance, but am wondering if that is equally effective, why wasn't it offered initially instead of Revlimid. I am concerned that since I do not have the knowledge that you and Multibilly do, I could get myself in a position that would eliminate alternate treatments down the road. I agree, the idea of being on maintenance, potentially for a very long time, and being sick is not the quality of life that I would wish on anyone. With all of the medications out there new and old, there has to be something that doesn't make me so sick. Thanks again for your response.
Kathleen
Multibilly: Thanks for confirming for me that there doesn't seem to be any hard and fast rules on maintenance, I have tried to keep up on all your posts, you seem to have a depth of knowledge that is hard to find. I did ask about lowering my dosage to 5 mg, but the response was that typically a dosage that low was used for patients with kidney issues. I would love to eliminate maintenance altogether, but am frankly terrified that I would be adversely affecting my overall survival.
Dogmom: My induction treatment was similar to your husband's, but I had 6 rounds of CyborD, which put me in a complete response, with little side effects, I would be happy to go back on that treatment. I will most definitely ask my doctor the next time I see him, if this course of treatment would be possible. May I ask what type of myeloma your husband has?
JPC: I was originally diagnosed as standard risk, I believe mainly because of the 13q del under FISH. I have noticed that many myeloma patients have been put on Velcade maintenance every other week. I handled the Velcade very well in induction, so I am wondering if I could go back on that for maintenance, but am wondering if that is equally effective, why wasn't it offered initially instead of Revlimid. I am concerned that since I do not have the knowledge that you and Multibilly do, I could get myself in a position that would eliminate alternate treatments down the road. I agree, the idea of being on maintenance, potentially for a very long time, and being sick is not the quality of life that I would wish on anyone. With all of the medications out there new and old, there has to be something that doesn't make me so sick. Thanks again for your response.
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?
Maintenance is a lot like playing "whack a mole." The plan is to keep the myeloma mole from raising its head. Once it does, the trick is to figure out which hammer (treatment) to use to keep him from coming back. (I admit it's a little silly, but I really do see the analogy.)
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Who should have Revlimid maintenance?
Hi KS:
Getting back to you on Velcade maintenance. The big downside is that it's not oral, and you need to go into the office twice a month. Revlimid is also more studied and has a good bit more documentation of effectiveness. There was one study last year in Europe published which showed some activity with Velcade maintenance across a general population. Prior to that, Velcade was observed to have activity for t(4;14), and doctors started using it on very limited hard data, initially, whenever t(4;14) was identified, and most doctors, I think, concur that it is applicable to that case.
You also raise a very good question. If you are on Revlimid maintenance until progression, then when you do progress (hopefully a very long time) then you are at that point refractory to Revlimid at the maintenance level (say 10 mg). I think the jury is out on whether or not you can go back up to 25 mg Revlimid for 2nd line of treatment (say as part of RVD), or if you need to move to Pomalyst instead. I did notice on a recent update of mSmart that they are moving to Pomalyst in the case where patients have progressed while on Revlimid maintenance. So it's a judgement call, I don't know that answer, but it is a very good point that you are considering.
And Coach, your analogy I think was very visual, and I liked it and thought it was illustrative.
Good luck.
Getting back to you on Velcade maintenance. The big downside is that it's not oral, and you need to go into the office twice a month. Revlimid is also more studied and has a good bit more documentation of effectiveness. There was one study last year in Europe published which showed some activity with Velcade maintenance across a general population. Prior to that, Velcade was observed to have activity for t(4;14), and doctors started using it on very limited hard data, initially, whenever t(4;14) was identified, and most doctors, I think, concur that it is applicable to that case.
You also raise a very good question. If you are on Revlimid maintenance until progression, then when you do progress (hopefully a very long time) then you are at that point refractory to Revlimid at the maintenance level (say 10 mg). I think the jury is out on whether or not you can go back up to 25 mg Revlimid for 2nd line of treatment (say as part of RVD), or if you need to move to Pomalyst instead. I did notice on a recent update of mSmart that they are moving to Pomalyst in the case where patients have progressed while on Revlimid maintenance. So it's a judgement call, I don't know that answer, but it is a very good point that you are considering.
And Coach, your analogy I think was very visual, and I liked it and thought it was illustrative.
Good luck.
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JPC - Name: JPC
Re: Who should have Revlimid maintenance?
KS-
In addition to all of the other information that you have received and your discussion with your doctor, are you being seen by a myeloma specialist? From your doctor's response, it seems as if s/he is sticking with the protocol that was used in the initial clinical trial for maintenance therapy.
When I had my transplant and was 100 days out, my oncologist recommended that I start maintenance. I was on the border about it because one of the reasons that I agreed to a transplant was in hopes of being drug free for a while. I finally relented and started Revlimid maintenance at 10 mg. But, within 5 days, I had some significant side effects that alarmed me and my oncologist. So, we decided to discontinue maintenance. My feeling at the time was that it was too soon for my body to be taking in drugs again. I was drug free for almost 3 years before relapsing.
When I relapsed, my oncologist suggested that we try Revlimid and dexamethasone again, that's what I had for induction, because it had worked well. By that time, I felt that my system could handle the drugs again and I agreed. The combination was tolerated well and I've been on it for almost 3 years now. As side effects to the Revlimid and/or the dex have developed, my oncologist has changed my dosages of each drug a few times going from 15 mg of Revlimid to 10 to 5 and back up to 10 again and from 20 mg of dex to 12 mg of dex.
If you aren't happy with your maintenance regimen and your oncologist isn't open to modifying it, consider going for an opinion with another oncologist / myeloma specialist. Remember that in the end you are the one who decides whether you will do a recommended treatment or not.
All the best,
Nancy in Phila
In addition to all of the other information that you have received and your discussion with your doctor, are you being seen by a myeloma specialist? From your doctor's response, it seems as if s/he is sticking with the protocol that was used in the initial clinical trial for maintenance therapy.
When I had my transplant and was 100 days out, my oncologist recommended that I start maintenance. I was on the border about it because one of the reasons that I agreed to a transplant was in hopes of being drug free for a while. I finally relented and started Revlimid maintenance at 10 mg. But, within 5 days, I had some significant side effects that alarmed me and my oncologist. So, we decided to discontinue maintenance. My feeling at the time was that it was too soon for my body to be taking in drugs again. I was drug free for almost 3 years before relapsing.
When I relapsed, my oncologist suggested that we try Revlimid and dexamethasone again, that's what I had for induction, because it had worked well. By that time, I felt that my system could handle the drugs again and I agreed. The combination was tolerated well and I've been on it for almost 3 years now. As side effects to the Revlimid and/or the dex have developed, my oncologist has changed my dosages of each drug a few times going from 15 mg of Revlimid to 10 to 5 and back up to 10 again and from 20 mg of dex to 12 mg of dex.
If you aren't happy with your maintenance regimen and your oncologist isn't open to modifying it, consider going for an opinion with another oncologist / myeloma specialist. Remember that in the end you are the one who decides whether you will do a recommended treatment or not.
All the best,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Who should have Revlimid maintenance?
Hello KS,
Nancy and others have already covered a lot of valuable advice and options.
I opted against a transplant, and after my 9 (x 4 week) cycles of induction, I was feeling fatigued round the clock, like you, during the last 3 cycles of induction (weekly Velcade and 20 mg dex with 15 mg Revlimid, 3 weeks on and 1 week off). That was not the case in the first few cycles and the hyper feeling after the 20 mg dex and the exhaustion that followed lasted for only a day or so.
My oncologist 'tapered' down my chemo to just Revlimid (15 mg, 3 weeks on and 1 week off) after 3 more cycles of Revlimid with dex. However, I developed a pretty widespread Revlimid rash on both of my legs on the 11th day. My oncologist asked me to change my Revlimid to 15 mg on an alternate day basis and it cured the rash and also seemed to be far more tolerable. We tried 10 mg/day, 3 weeks on and 1 week off, and that did not seem to help my kappa and kappa-lambda readings. It did seem to make me a bit more tired, though.
I have been on a 20 mg every alternate day Revlimid for the past 6 months and I am tolerating it a lot better than the 3 weeks on and 1 week off 10 mg Revlimid. My kappa readings have been very stable (though they rose to around 40 mg/L from around 12.5 mg/L when I had dex with the Revlimid) and the kappa-lambda ratio has settled down in the normal range. The only fatigue I feel is around noon on the day after the Revlimid dose. It lasts for only a couple of hours and as long as I avoid a big lunch, I can generally work right through that afternoon. This is my experience and it may not work for everyone.
Just a footnote: My kappa was stable around 12.5 mg/l ( normal 3.3 - 19.4) and the kappa-lambda ratio around 1.05 (normal 0.26 - 1.65) for 3 months after stopping the Velcade. These reading rose to the current levels, almost immediately after stopping the dex. My oncologist, however, is pretty certain that the side effects of the dex far outweigh its benefits and he wants me to stay the course as long as my readings are stable at the current levels.
I highly recommend that you should explore this alternate day Revlimid dosing. It has made my life a lot easier and my lab tests are no worse than the other regimens I tried. Actually, I am planning on asking my oncologist to reduce this dose to 15 mg (every alternate day) IF my tests are stable again next week. As coachhoke has written in the "Revlimid maintenance and its side effects" thread, the reduced size of the Revlimid dose did not seem to have any adverse effect for him. I hope that applies in my case, too.
Of course, please note that every patient reacts somewhat differently to the treatments and everyone's myeloma is not the same.
Nancy and others have already covered a lot of valuable advice and options.
I opted against a transplant, and after my 9 (x 4 week) cycles of induction, I was feeling fatigued round the clock, like you, during the last 3 cycles of induction (weekly Velcade and 20 mg dex with 15 mg Revlimid, 3 weeks on and 1 week off). That was not the case in the first few cycles and the hyper feeling after the 20 mg dex and the exhaustion that followed lasted for only a day or so.
My oncologist 'tapered' down my chemo to just Revlimid (15 mg, 3 weeks on and 1 week off) after 3 more cycles of Revlimid with dex. However, I developed a pretty widespread Revlimid rash on both of my legs on the 11th day. My oncologist asked me to change my Revlimid to 15 mg on an alternate day basis and it cured the rash and also seemed to be far more tolerable. We tried 10 mg/day, 3 weeks on and 1 week off, and that did not seem to help my kappa and kappa-lambda readings. It did seem to make me a bit more tired, though.
I have been on a 20 mg every alternate day Revlimid for the past 6 months and I am tolerating it a lot better than the 3 weeks on and 1 week off 10 mg Revlimid. My kappa readings have been very stable (though they rose to around 40 mg/L from around 12.5 mg/L when I had dex with the Revlimid) and the kappa-lambda ratio has settled down in the normal range. The only fatigue I feel is around noon on the day after the Revlimid dose. It lasts for only a couple of hours and as long as I avoid a big lunch, I can generally work right through that afternoon. This is my experience and it may not work for everyone.
Just a footnote: My kappa was stable around 12.5 mg/l ( normal 3.3 - 19.4) and the kappa-lambda ratio around 1.05 (normal 0.26 - 1.65) for 3 months after stopping the Velcade. These reading rose to the current levels, almost immediately after stopping the dex. My oncologist, however, is pretty certain that the side effects of the dex far outweigh its benefits and he wants me to stay the course as long as my readings are stable at the current levels.
I highly recommend that you should explore this alternate day Revlimid dosing. It has made my life a lot easier and my lab tests are no worse than the other regimens I tried. Actually, I am planning on asking my oncologist to reduce this dose to 15 mg (every alternate day) IF my tests are stable again next week. As coachhoke has written in the "Revlimid maintenance and its side effects" thread, the reduced size of the Revlimid dose did not seem to have any adverse effect for him. I hope that applies in my case, too.
Of course, please note that every patient reacts somewhat differently to the treatments and everyone's myeloma is not the same.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Who should have Revlimid maintenance?
The Mayo Clinic mSmart guidelines (link to PDF) include recommendations for maintenance.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
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