My husband was diagnosed with multiple myeloma in April 2015. 50 years old. Healthy.
Kappa free light chains - 50.75
Lambda free light chains - 1.17
Kappa / lambda free light chain ratio - 43.38
M protein peak - 0.0
24-hour urine positive for protein and light chains
15 lytic lesions throughout body ("B" in the "CRAB" criteria)
Just completed 6 rounds of Revlimid, Velcade, and dexamethasone (RVD) with Zometa monthly. Have chosen not to do a stem cell transplant (SCT) upfront, and insurance does not cover harvest and hold.
He reached complete response (CR) at round 3 and is still in CR presently.
My questions are:
Is it normal to have a 0.0 M spike at diagnosis? Not sure I understand how that's possible. He remains at 0.0.
Our oncologist recommends Velcade for maintenance.. Shot every other week. His rationale was: we were unable to obtain cytogenetics, so he said he would treat him as high risk, along with the fact that Velcade will not affect harvesting of stem cells at a later date.
Has anyone else done Velcade for the same reasons? If so, was the dose lower then the induction dose?
He also recommended a bone marrow biopsy (BMB) to check minimal residual disease and possibly cytogenetics. Has anyone been able to obtain cytogenetics after RVD induction?
Thank you for helping us navigate through this maze.
Kerri
Forums
Re: M-spike equals 0 at diagnosis - is that possible?
Good morning, Kerri:
The more common form of myeloma overproduces one of the three immunoglobulins (IgA, IgG, IgM). This form is associated with an M-spike. Off the top of my head, this might be 60 to 70 percent of newly diagnosed cases. Myeloma sometimes occurs, however, in a form where only kappa and lambda "free light chains" are overproduced. This is called light chain multiple myeloma, which is the condition that your husband has based on the data you provide.
The serum protein electrophoresis (SPEP) test is therefore useless at present. However, I do recall reading that light chain can possible evolve into heavy chain, and vice versa, over time, so I would expect that the SPEP would be periodically done. But for now, your doctors will be looking at the K/L ratio to monitor.
I am glad that your husband is healthy so far, and hopefully will remain so for a very long time.
Hope this helps. Regards, JPC
The more common form of myeloma overproduces one of the three immunoglobulins (IgA, IgG, IgM). This form is associated with an M-spike. Off the top of my head, this might be 60 to 70 percent of newly diagnosed cases. Myeloma sometimes occurs, however, in a form where only kappa and lambda "free light chains" are overproduced. This is called light chain multiple myeloma, which is the condition that your husband has based on the data you provide.
The serum protein electrophoresis (SPEP) test is therefore useless at present. However, I do recall reading that light chain can possible evolve into heavy chain, and vice versa, over time, so I would expect that the SPEP would be periodically done. But for now, your doctors will be looking at the K/L ratio to monitor.
I am glad that your husband is healthy so far, and hopefully will remain so for a very long time.
Hope this helps. Regards, JPC
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JPC - Name: JPC
Re: M-spike equals 0 at diagnosis - is that possible?
One more point Kerri, to your second question.
I have recently heard some major multiple myeloma docs speculate that Velcade is equal to or possibly superior to Revlimid for maintenance. The reason they use Revlimid is the pill formulation. For maintenance, it is much easier to use the pill formulation.
There is an oral formulation for Velcade that is new and not yet "fully" approved. It is called ixazomib. In the meanwhile, if you can live with the trips to the hospital every other week, I think the Velcade approach is fine. There are specific cases where it is well established that Velcade is better. One, for example, is t(4,14) by FISH. I am guessing your onc thinks that Velcade is better for the light chain condition. I have not seen a specific study to that effect, but I am not the doc. Down the road (2 years?), maybe ixazomib will be approved for maintenance, and it will be somewhat easier to deal with.
Good luck
I have recently heard some major multiple myeloma docs speculate that Velcade is equal to or possibly superior to Revlimid for maintenance. The reason they use Revlimid is the pill formulation. For maintenance, it is much easier to use the pill formulation.
There is an oral formulation for Velcade that is new and not yet "fully" approved. It is called ixazomib. In the meanwhile, if you can live with the trips to the hospital every other week, I think the Velcade approach is fine. There are specific cases where it is well established that Velcade is better. One, for example, is t(4,14) by FISH. I am guessing your onc thinks that Velcade is better for the light chain condition. I have not seen a specific study to that effect, but I am not the doc. Down the road (2 years?), maybe ixazomib will be approved for maintenance, and it will be somewhat easier to deal with.
Good luck
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JPC - Name: JPC
Re: M-spike equals 0 at diagnosis - is that possible?
One thing to keep in mind with the hassle of Velcade maintenance is that we have at least one person on the forum that self-administers. See this forum thread:
"Self-injecting Velcade - my experience" (started Aug 17, 2014)
This may not be for everybody, but it is something I would jump on if I ever found myself needing to take Velcade for any long period of time. My doctor is already open to this should I need to do it. But I suspect that some doctors would not be as accommodating as Coop's and mine.
"Self-injecting Velcade - my experience" (started Aug 17, 2014)
This may not be for everybody, but it is something I would jump on if I ever found myself needing to take Velcade for any long period of time. My doctor is already open to this should I need to do it. But I suspect that some doctors would not be as accommodating as Coop's and mine.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: M-spike equals 0 at diagnosis - is that possible?
Sounds as though you have had an excellent response to treatment. Like you, I have light chain disease (IgA kappa). Even though my kappa light chains were 12,000 at diagnosis, my M-spike was 0.4 g/dL.
I responded to treatment very well, had a SCT last October, and as of 3 weeks ago am in stringent complete response (sCR). Because I have addition to chromosome 1, I am considered high risk by some doctors. As a result, I am taking the Velcade injection (sub-q), every other week, along with 5 mg Revlimid on a 21-day cycle. When I receive the Velcade, I also get 12 mg of dex.
According to the myeloma specialist, I am to continue this regimen, barring relapse, for 3 years. If I am lucky enough to stay in remission until then, we will reevaluate my situation, and perhaps I will be granted a drug holiday. As far as my treatment goes, I find the Velcade relatively tolerable. For me, the Revlimid causes more problems, mostly of a gastrointestinal nature.
Good luck, and I hope your excellent response continues!
I responded to treatment very well, had a SCT last October, and as of 3 weeks ago am in stringent complete response (sCR). Because I have addition to chromosome 1, I am considered high risk by some doctors. As a result, I am taking the Velcade injection (sub-q), every other week, along with 5 mg Revlimid on a 21-day cycle. When I receive the Velcade, I also get 12 mg of dex.
According to the myeloma specialist, I am to continue this regimen, barring relapse, for 3 years. If I am lucky enough to stay in remission until then, we will reevaluate my situation, and perhaps I will be granted a drug holiday. As far as my treatment goes, I find the Velcade relatively tolerable. For me, the Revlimid causes more problems, mostly of a gastrointestinal nature.
Good luck, and I hope your excellent response continues!
Re: M-spike equals 0 at diagnosis - is that possible?
JPC,
I would really like to know – if you are comfortable telling me and the community – who these major myeloma specialists are and upon what they base their speculation about Velcade. This topic is of utmost interest for me, since I am recently on Velcade maintenance, subq every other week.
My specialist emphasized when I agreed to this regimen that there are no studies (nor will there be any future studies forthcoming, because Velcade soon will no longer be under patent) supporting the use of Velcade for maintenance. Evidently, the incentive to undertake studies will be lost.
Although I agreed, I feel as if I am in the middle of an experiment. It would be most comforting to know in greater detail that there are other well respected myeloma specialists who think Velcade is appropriate for maintenance. Like others, I find it more tolerable than the Revlimid / dexamethasone combination. I hope that it stays that way.
Thank you for your contributions to the forum. I always find them extremely helpful.
I would really like to know – if you are comfortable telling me and the community – who these major myeloma specialists are and upon what they base their speculation about Velcade. This topic is of utmost interest for me, since I am recently on Velcade maintenance, subq every other week.
My specialist emphasized when I agreed to this regimen that there are no studies (nor will there be any future studies forthcoming, because Velcade soon will no longer be under patent) supporting the use of Velcade for maintenance. Evidently, the incentive to undertake studies will be lost.
Although I agreed, I feel as if I am in the middle of an experiment. It would be most comforting to know in greater detail that there are other well respected myeloma specialists who think Velcade is appropriate for maintenance. Like others, I find it more tolerable than the Revlimid / dexamethasone combination. I hope that it stays that way.
Thank you for your contributions to the forum. I always find them extremely helpful.
Re: M-spike equals 0 at diagnosis - is that possible?
In answer to your comment about maintenance being experimental, it is, most definitely!
My impression is that unless your cytogenetics are normal, AND you are in sCR, CR or MRD negative, they will prescribe some type of maintenance. I think the evidence is being assessed as we speak, and we, unfortunately, are some of the guinea pigs. Personally, I don't mean that in a bad way. We may be the first "generation" of myeloma patients to benefit from these maintenance protocols. Only time will tell.
I don't like taking all of these drugs, either, and there are days, when I don't feel so great, that I take them with more than a little hesitancy. However, I would rather overdo it a little, than under do it, and suffer the grave consequences that may result. So, for as long as my body handles it, and it is effective, I will drink the Kool-Aid.
The other point I would like to make is this; Just as any expert in a particular field has a "gut feeling" about something, based upon their experiences, not necessarily having a statistical study to back it up, they are sometimes right, regardless. FYI, I really didn't like the myeloma specialist I occasionally see, who prescribed my maintenance protocol. My regular onc insisted I see this particular specialist, who told me about 12 times during a 20-minute visit how high risk I was due to the chromosome one addition. It was really disconcerting. Perhaps he thought that, unless he impressed me with the seriousness of my condition, I wouldn't follow his protocol, especially since I was in sCR. Who knows? But I do believe that he is right about the maintenance protocol because he lives and breathes this stuff,
Time will tell. I the meantime, I like to think that we are moving things forward to an eventual cure.
My impression is that unless your cytogenetics are normal, AND you are in sCR, CR or MRD negative, they will prescribe some type of maintenance. I think the evidence is being assessed as we speak, and we, unfortunately, are some of the guinea pigs. Personally, I don't mean that in a bad way. We may be the first "generation" of myeloma patients to benefit from these maintenance protocols. Only time will tell.
I don't like taking all of these drugs, either, and there are days, when I don't feel so great, that I take them with more than a little hesitancy. However, I would rather overdo it a little, than under do it, and suffer the grave consequences that may result. So, for as long as my body handles it, and it is effective, I will drink the Kool-Aid.
The other point I would like to make is this; Just as any expert in a particular field has a "gut feeling" about something, based upon their experiences, not necessarily having a statistical study to back it up, they are sometimes right, regardless. FYI, I really didn't like the myeloma specialist I occasionally see, who prescribed my maintenance protocol. My regular onc insisted I see this particular specialist, who told me about 12 times during a 20-minute visit how high risk I was due to the chromosome one addition. It was really disconcerting. Perhaps he thought that, unless he impressed me with the seriousness of my condition, I wouldn't follow his protocol, especially since I was in sCR. Who knows? But I do believe that he is right about the maintenance protocol because he lives and breathes this stuff,
Time will tell. I the meantime, I like to think that we are moving things forward to an eventual cure.
Re: M-spike equals 0 at diagnosis - is that possible?
Hi Mrozdav,
I myself have not heard what JPC writes in his posting about myeloma specialists and their opinions of Revlimid versus Velcade maintenance therapy. However, it is my impression that many myeloma specialists think that, if you could give the same patient the same number of cycles of either Revlimid or Velcade, that Velcade would tend to be a bit more effective on average.
This would also translate, more or less, into Velcade being a bit more effective than Revlimid as maintenance therapy, assuming you could give both drugs for the same length of time.
That last assumption isn't necessarily realistic, though, because many patients run into issues with peripheral neuropathy with Velcade when it's given over long periods of time. While Revlimid has its own issues when it comes to long-term use, I think Velcade's PN issue tends to create more limitations.
The other thing to remember is that, when we say "more effective" when we're talking about maintenance therapies, we really mean "more effective at increasing progression-free survival". The jury is still out as to whether either Velcade or Revlimid maintenance really increases overall survival.
I agree with you, by the way, about JPC's postings here in the forum. They are a very valuable addition to the discussion here.
I myself have not heard what JPC writes in his posting about myeloma specialists and their opinions of Revlimid versus Velcade maintenance therapy. However, it is my impression that many myeloma specialists think that, if you could give the same patient the same number of cycles of either Revlimid or Velcade, that Velcade would tend to be a bit more effective on average.
This would also translate, more or less, into Velcade being a bit more effective than Revlimid as maintenance therapy, assuming you could give both drugs for the same length of time.
That last assumption isn't necessarily realistic, though, because many patients run into issues with peripheral neuropathy with Velcade when it's given over long periods of time. While Revlimid has its own issues when it comes to long-term use, I think Velcade's PN issue tends to create more limitations.
The other thing to remember is that, when we say "more effective" when we're talking about maintenance therapies, we really mean "more effective at increasing progression-free survival". The jury is still out as to whether either Velcade or Revlimid maintenance really increases overall survival.
I agree with you, by the way, about JPC's postings here in the forum. They are a very valuable addition to the discussion here.
Re: M-spike equals 0 at diagnosis - is that possible?
Hello Mrozdav and Cheryl:
I did not want to hijack the tread from the initial question by Kerri. You raised a lot of interesting questions, and there is no way I can respond to them all in a post of reasonable length (and by the way, thank you very much for the nice comments). But I can try to give a quick answer to Mroadov's concerns. Here is a quote from a 2011 Beacon article, "Prognosis For Multiple Myeloma Patients With Chromosomal Abnormality t(4;14) Remains Poor":
Keep in mind that that was a 2011 article. Mrozdav: I suggest you Google the following: "multiple myeloma, Velcade, translocation (4,14)". A lot of articles will come up. If you try a different spelling or a different order, more articles will come up that did not come up the first time.
There are some other doctors that have studied this. Dr. Saad Usmani is a researcher who has frequently authored articles at ASH and ASCO. He was formerly at UAMS. I cannot find it right now, but he has researched t(4,14) and Velcade, and reported on the results. I believe he has a 2014 study that he presented with the best, most recent hard data. I recall Dr. Gareth Morgan stating in a podcast that he thinks that t(4,14) is at this time virtually standard risk. There has been a couple of studies out of Europe (I believe the HOVON group, and a group out of Germany) that discussed this. I am advised that Msmart (Mayo Clinic) used to have t(4,14) as high risk, but moved it over to intermediate risk based on the research. If you also read the Msmart notes, I believe they specifically call out bortezomib-based maintenance.
That's the best I can do for now (if you dig a round a bit, I am sure that you will find a lot more). Hope it helps.
I did not want to hijack the tread from the initial question by Kerri. You raised a lot of interesting questions, and there is no way I can respond to them all in a post of reasonable length (and by the way, thank you very much for the nice comments). But I can try to give a quick answer to Mroadov's concerns. Here is a quote from a 2011 Beacon article, "Prognosis For Multiple Myeloma Patients With Chromosomal Abnormality t(4;14) Remains Poor":
To improve the prognosis for patients with t(4;14), Dr. Rajkumar, who was not involved in the study, suggested focusing research on initial therapy. “Data from the University of Arkansas for Medical Sciences shows that with aggressive Velcade-based initial therapy, transplant, and then Velcade-based maintenance, survival of [patients with] t(4;14) can be similar to [those with] standard-risk myeloma,” Dr. Rajkumar told The Myeloma Beacon.
Keep in mind that that was a 2011 article. Mrozdav: I suggest you Google the following: "multiple myeloma, Velcade, translocation (4,14)". A lot of articles will come up. If you try a different spelling or a different order, more articles will come up that did not come up the first time.
There are some other doctors that have studied this. Dr. Saad Usmani is a researcher who has frequently authored articles at ASH and ASCO. He was formerly at UAMS. I cannot find it right now, but he has researched t(4,14) and Velcade, and reported on the results. I believe he has a 2014 study that he presented with the best, most recent hard data. I recall Dr. Gareth Morgan stating in a podcast that he thinks that t(4,14) is at this time virtually standard risk. There has been a couple of studies out of Europe (I believe the HOVON group, and a group out of Germany) that discussed this. I am advised that Msmart (Mayo Clinic) used to have t(4,14) as high risk, but moved it over to intermediate risk based on the research. If you also read the Msmart notes, I believe they specifically call out bortezomib-based maintenance.
That's the best I can do for now (if you dig a round a bit, I am sure that you will find a lot more). Hope it helps.
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JPC - Name: JPC
Re: M-spike equals 0 at diagnosis - is that possible?
JPC,
I have been mulling over what your last posting is saying. I think what you originally meant to convey is not that there are separate studies indicating that Velcade maintenance is better than Revlimid maintenance, but that for certain mutations, specifically, t(4;14), it is well established that Velcade is an essential induction therapy. Accordingly, if one is to go on maintenance, it is reasonable to assume that if Velcade worked during induction, Velcade should be continued during maintenance. Am I summarizing the gist of your comments correctly?
In my own case, Revlimid / dexamethasone worked very well, but it was not until Velcade was added to the cocktail that I achieved a complete response. For two months on Revlimid / dexamethasone, I seemed to have reached a plateau where the relevant numbers, although thankfully low, were barely moving. So, clearly, Velcade did the trick for me, as the articles you cited suggest would happen.
For me, it made sense that my maintenance would consist of Velcade and not Revlimid, although I was eager to find some literature that addresses this precise issue. I have not found any. Indeed, I have not found any articles that discuss Velcade maintenance for t(4;14) in the absence of a stem cell transplant (also my case), progression free survival or overall survival.
Do you have any information about Velcade maintenance vs. Velcade / dexamethasone maintenance? I believe that the Mayo Clinic does not recommend the dexamethasone as part of the therapy, but I could be mistaken. I am happy to be off dex, but am curious as to why it is left out because I thought that it serves to enhance the efficacy of the Velcade.
Any thoughts about this would be welcome.
I have been mulling over what your last posting is saying. I think what you originally meant to convey is not that there are separate studies indicating that Velcade maintenance is better than Revlimid maintenance, but that for certain mutations, specifically, t(4;14), it is well established that Velcade is an essential induction therapy. Accordingly, if one is to go on maintenance, it is reasonable to assume that if Velcade worked during induction, Velcade should be continued during maintenance. Am I summarizing the gist of your comments correctly?
In my own case, Revlimid / dexamethasone worked very well, but it was not until Velcade was added to the cocktail that I achieved a complete response. For two months on Revlimid / dexamethasone, I seemed to have reached a plateau where the relevant numbers, although thankfully low, were barely moving. So, clearly, Velcade did the trick for me, as the articles you cited suggest would happen.
For me, it made sense that my maintenance would consist of Velcade and not Revlimid, although I was eager to find some literature that addresses this precise issue. I have not found any. Indeed, I have not found any articles that discuss Velcade maintenance for t(4;14) in the absence of a stem cell transplant (also my case), progression free survival or overall survival.
Do you have any information about Velcade maintenance vs. Velcade / dexamethasone maintenance? I believe that the Mayo Clinic does not recommend the dexamethasone as part of the therapy, but I could be mistaken. I am happy to be off dex, but am curious as to why it is left out because I thought that it serves to enhance the efficacy of the Velcade.
Any thoughts about this would be welcome.
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