I really need advice as the two oncologists that are treating my multiple myeloma are recommending my undergoing an "early" ASCT (i.e., I have recently completed induction therapy and achieved at least a VGPR - no multiple myeloma detected by flow cytometry [FC] in the biopsy and a 0.3 g/dL paraprotein detected prior to the completion of Cycle 4 - VRD).
Here are the facts of my case:
Initial diagnosis - 7 April 2014.
Initial monoclonal protein level was 5.41 g/dL.
FISH indicated an 11q mutation.
Two plasmacytomas. One caused a compression fracture at T8, which was repaired with kyphoplasty on 15 April. The second was in the right femoral neck and treated with radiation (last treatment was on 30 April). However, the osteolytic lesion did not heal well and I underwent an IM nail surgery on 17 July.
Induction therapy - (start date 10 April / end date 6 June); 3 cycles of bortezomib [Velcade] (sub q, max dose, twice per week), lenalidomide [Revlimid] (25 mg / day; 14 days), and dexamethasone (40mg / week). The community oncologist would recommend an ASCT if I did not achieve a CR.
Close to the end on Cycle 3, the M-spike had dropped to 0.5g / dL - possibly residual. No multiple myeloma detected in urine IFE.
I asked Bob Orlowski if a fourth cycle would be prudent. He affirmed and so I underwent a fourth cycle.
Near the end of Cycle 4 (start date 13 June / end date 26 June), the M-spike was measured at 0.3 mg/dL (which might be residual). Also, FC of a bone marrow biopsy did not detect multiple myeloma! So, under the older definition, MRD negative.
My current thinking is to forgo an ASCT for now and retain an option to undergo one later.
Dr. Orlowski has suggested weekly Velcade, sub q, as maintenance. However, I am concerned about peripheral neuropathy.
What are thoughts on the way forward in terms of a maintenance regimen if I postpone the ASCT?
I understand that low dose lenalidomide (10 mg to 15 mg per day) is the standard now - with possible low does dex (40mg / week) as a complement. Dr. Orlowski expressed concerns about bone marrow issues from Revlimid that could impact ASCT eligibility later.
Dr. Mark Viola
Moderator's Note: There is a clarification / retraction related to this posting which can be found in this thread by going to this link.
Forums
Re: Velcade or Revlimid maintenance therapy?
At a recent consult at John Hopkins when I asked about Velcade maintenance I was told there was no current data on its efficacy and only one current clinical trial testing it.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Velcade or Revlimid maintenance therapy?
Hey Mark,
When I briefly discussed this subject with Dr. Berenson, he tended to favor proteasome inhibitors for maintenance as opposed to an IMID. But bear in mind that I am smoldering, so this is just something I recall in one of my sideline discussions with him, not something that resulted from an extended discussion or real-life maintenance experience with him.
He has also mentioned to me his continued caution about Revlimid with respect to potential secondary malignancies. In any case, please don't take this as being representative of what he might say in your particular situation, but rather something I recall during an appointment focused primarily on my smoldering condition.
Even though a lot of folks take Revlimid for maintenance, I don't think it would be accurate to say that low dose Revlimid is the "standard" for maintenance therapy. There is still a lot of debate that is going on regarding maintenance therapy and the appropriate drug or drug combo for maintenance (Revlimid, Velcade, Revlimid + steroid, Kyprolis ... the list goes on).
The IMWG "consensus" on this subject was well covered by the Beacon https://myelomabeacon.org/news/2012/02/01/experts-publish-consensus-statement-on-maintenance-therapy-in-multiple-myeloma/
You can also look at recent IMWG consensus statement for transplant-ineligible patients and see see that there is hardly a clear cut endorsement of Revlimid as a "standard":
"Recommendations
-Disease and patient characteristics, quality of life, AEs and potential drug resistance should be considered.
-Thalidomide maintenance can be considered although its long term use is limited by the risk of peripheral neuropathy. (Grade A/Ib)
-Lenalidomide is very well tolerated and associated with higher risk of hematologic SPMs
.(Grade A/Ib)
-Bortezomib can be an effective alternative, with lower risk of peripheral neuropathy than thalidomide. (Grade B/IIa)"
The Mayo also has different takes on maintenance depending on whether one is transplant eligible or ineligible. They recommend Velcade for maintentance depending on the particular circumstances http://www.msmart.org/msmart_mar09_002.htm
I had never heard that Revlimid may compromise delayed ASCT eligibility. That is indeed an interesting comment from Dr. Orlowski and I would love to hear more about that caution.
Have you had peripheral neuropathy (PN) from your earlier subcutaneous Velcade injections? A lot of folks never experience PN with subcutaneous Velcade. 63% of sub-q Velcade patients did NOT experience any PN of any grade based on this study: https://www.velcade-hcp.com/subcutaneous-injection/ I also believe the Kyprolis figures for PN are even better.
I think the important thing is to keep on top of any signs of PN and to report them immediately to your doc and to discuss reducing doses or adjusting cycle frequencies (or switching drugs) if this happens.
Good luck
When I briefly discussed this subject with Dr. Berenson, he tended to favor proteasome inhibitors for maintenance as opposed to an IMID. But bear in mind that I am smoldering, so this is just something I recall in one of my sideline discussions with him, not something that resulted from an extended discussion or real-life maintenance experience with him.
He has also mentioned to me his continued caution about Revlimid with respect to potential secondary malignancies. In any case, please don't take this as being representative of what he might say in your particular situation, but rather something I recall during an appointment focused primarily on my smoldering condition.
Even though a lot of folks take Revlimid for maintenance, I don't think it would be accurate to say that low dose Revlimid is the "standard" for maintenance therapy. There is still a lot of debate that is going on regarding maintenance therapy and the appropriate drug or drug combo for maintenance (Revlimid, Velcade, Revlimid + steroid, Kyprolis ... the list goes on).
The IMWG "consensus" on this subject was well covered by the Beacon https://myelomabeacon.org/news/2012/02/01/experts-publish-consensus-statement-on-maintenance-therapy-in-multiple-myeloma/
You can also look at recent IMWG consensus statement for transplant-ineligible patients and see see that there is hardly a clear cut endorsement of Revlimid as a "standard":
"Recommendations
-Disease and patient characteristics, quality of life, AEs and potential drug resistance should be considered.
-Thalidomide maintenance can be considered although its long term use is limited by the risk of peripheral neuropathy. (Grade A/Ib)
-Lenalidomide is very well tolerated and associated with higher risk of hematologic SPMs
.(Grade A/Ib)
-Bortezomib can be an effective alternative, with lower risk of peripheral neuropathy than thalidomide. (Grade B/IIa)"
The Mayo also has different takes on maintenance depending on whether one is transplant eligible or ineligible. They recommend Velcade for maintentance depending on the particular circumstances http://www.msmart.org/msmart_mar09_002.htm
I had never heard that Revlimid may compromise delayed ASCT eligibility. That is indeed an interesting comment from Dr. Orlowski and I would love to hear more about that caution.
Have you had peripheral neuropathy (PN) from your earlier subcutaneous Velcade injections? A lot of folks never experience PN with subcutaneous Velcade. 63% of sub-q Velcade patients did NOT experience any PN of any grade based on this study: https://www.velcade-hcp.com/subcutaneous-injection/ I also believe the Kyprolis figures for PN are even better.
I think the important thing is to keep on top of any signs of PN and to report them immediately to your doc and to discuss reducing doses or adjusting cycle frequencies (or switching drugs) if this happens.
Good luck
Last edited by Multibilly on Fri Aug 01, 2014 6:55 am, edited 2 times in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Velcade or Revlimid maintenance therapy?
For relatively recent information on what common maintenance therapies are among the Beacon's readers, see this Weekly Poll carried out last fall:
"Weekly Poll – Current Maintenance Regimen - 2013," Myeloma Beacon Weekly Poll, started October 2, 2013.
There are certainly a range of alternatives to Revlimid maintenance -- such as subcutaneous Velcade and potentially Kyprolis, as Multibilly suggested. However, it's our impression that, as is indicated in the Weekly Poll results, Revlimid is definitely the most frequent maintenance therapy used in the U.S.
For those who want to read more about what Beacon physician columnist Dr. Vincent Rajkumar has written recently about Revlimid maintenance, please see this posting here in the forum that we just made: "Dr. Rajkumar on maintenance therapy."
"Weekly Poll – Current Maintenance Regimen - 2013," Myeloma Beacon Weekly Poll, started October 2, 2013.
There are certainly a range of alternatives to Revlimid maintenance -- such as subcutaneous Velcade and potentially Kyprolis, as Multibilly suggested. However, it's our impression that, as is indicated in the Weekly Poll results, Revlimid is definitely the most frequent maintenance therapy used in the U.S.
For those who want to read more about what Beacon physician columnist Dr. Vincent Rajkumar has written recently about Revlimid maintenance, please see this posting here in the forum that we just made: "Dr. Rajkumar on maintenance therapy."
Re: Velcade or Revlimid maintenance therapy?
Dear MarkV,
Maintenance therapy for multiple myeloma remains an area of intense interest and debate. If you ask 10 different myeloma specialists their thoughts, you will get several different answers. The guidelines are useful and explain the nuances, the risks and benefits, and the gaps in knowledge, but they are just guidelines with some recommendations based on solid phase 3 evidence and other guidelines based on expert opinion alone.
There are data supporting a role for Revlimid and Velcade as maintenance therapy, particularly when administered after autologous stem cell transplant. If transplant is deferred, I agree that some form of maintenance would be appropriate - 4 cycles of therapy alone followed by no maintenance would not be an ideal course of therapy and likely lead to earlier relapse. In the absence of high-risk features, either Revlimid or Velcade could be used. In a standard risk scenario, and it appears that you have standard risk disease, there is no preferred regimen, although there are more phase 3 data supporting the use of Revlimid.
Prolonged Revlimid use can cause problems with stem cell mobilization when stem cell mobilization is accomplished with Neupogen alone. However, with the addition of Mozobil or chemotherapy followed by Neupogen, enough stem cells can usually be collected.
Dr. Orlowski is well versed n the nuances and "grayness" of the maintenance literature and will guide you well through murky waters. The bottom line is that it is a win-win situation and you currently have excellent control of your disease.
I hope this helps. Good luck and let us know how it goes!
Pete
Maintenance therapy for multiple myeloma remains an area of intense interest and debate. If you ask 10 different myeloma specialists their thoughts, you will get several different answers. The guidelines are useful and explain the nuances, the risks and benefits, and the gaps in knowledge, but they are just guidelines with some recommendations based on solid phase 3 evidence and other guidelines based on expert opinion alone.
There are data supporting a role for Revlimid and Velcade as maintenance therapy, particularly when administered after autologous stem cell transplant. If transplant is deferred, I agree that some form of maintenance would be appropriate - 4 cycles of therapy alone followed by no maintenance would not be an ideal course of therapy and likely lead to earlier relapse. In the absence of high-risk features, either Revlimid or Velcade could be used. In a standard risk scenario, and it appears that you have standard risk disease, there is no preferred regimen, although there are more phase 3 data supporting the use of Revlimid.
Prolonged Revlimid use can cause problems with stem cell mobilization when stem cell mobilization is accomplished with Neupogen alone. However, with the addition of Mozobil or chemotherapy followed by Neupogen, enough stem cells can usually be collected.
Dr. Orlowski is well versed n the nuances and "grayness" of the maintenance literature and will guide you well through murky waters. The bottom line is that it is a win-win situation and you currently have excellent control of your disease.
I hope this helps. Good luck and let us know how it goes!
Pete
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Velcade or Revlimid maintenance therapy?
One of the things that I would consider if you go the route of maintenance therapy is the fact that with Velcade you have to go for the injection on a weekly basis. For me this would have been a real pain to have to take half a day off from work each week to do this. Taking Revlimid, since it is an oral medication, is far more agreeable to my life needs as far as work is concerned.
Then, there also is the cost. Most insurances will cover Velcade under a different level since it is an injection given in a doctor's office. Relvimid is a prescription drug and, depending on your prescription coverage and the state that you live in, can be prohibitively expensive over the long term. There are multiple granting agencies that can help with the cost of Revlimid if you qualify financially. The qualifications are quite generous.
One of the side effects of Revlimid can be a depression of your blood counts which can lead to difficulty in harvesting stem cells if you should decide to go for a transplant at a later date. One of the ways of getting around this is to do stem cell harvesting now and have them stored for possible later use. You could also decide to do a transplant now since you did have some significant bone issues at diagnosis. Then after the transplant you would probably be faced with a similar decision to do maintenance with Velcade or Revlimid or go with no maintenance therapy.
I decided on an early transplant and my body decided on no maintenance by reacting badly to Revlimid maintenance within a few days of starting it. I went for almost 3 years before I relapsed and have been on Revlimid / dex for 20 months now at 15 mg for 21 days and 20 mg once a week.
Revlimid maintenance usually doesn't include dex with it. If you had problems with 40 mg of dex during your induction, you could ask to be lowered to 20 mg. I find it so much more tolerable than the 40 mg dose. I do still get one night of sleeplessness, a mild one day crash, and a mild one day of increased energy, and the one day of no pain from my arthritis.
So many decisions to be made over the life of our journeys with myeloma. I wish you the best in whatever you decide to do. Once the decision is made, don't look back and second guess yourself. It was the right one for you.
Nancy in Phila
Then, there also is the cost. Most insurances will cover Velcade under a different level since it is an injection given in a doctor's office. Relvimid is a prescription drug and, depending on your prescription coverage and the state that you live in, can be prohibitively expensive over the long term. There are multiple granting agencies that can help with the cost of Revlimid if you qualify financially. The qualifications are quite generous.
One of the side effects of Revlimid can be a depression of your blood counts which can lead to difficulty in harvesting stem cells if you should decide to go for a transplant at a later date. One of the ways of getting around this is to do stem cell harvesting now and have them stored for possible later use. You could also decide to do a transplant now since you did have some significant bone issues at diagnosis. Then after the transplant you would probably be faced with a similar decision to do maintenance with Velcade or Revlimid or go with no maintenance therapy.
I decided on an early transplant and my body decided on no maintenance by reacting badly to Revlimid maintenance within a few days of starting it. I went for almost 3 years before I relapsed and have been on Revlimid / dex for 20 months now at 15 mg for 21 days and 20 mg once a week.
Revlimid maintenance usually doesn't include dex with it. If you had problems with 40 mg of dex during your induction, you could ask to be lowered to 20 mg. I find it so much more tolerable than the 40 mg dose. I do still get one night of sleeplessness, a mild one day crash, and a mild one day of increased energy, and the one day of no pain from my arthritis.
So many decisions to be made over the life of our journeys with myeloma. I wish you the best in whatever you decide to do. Once the decision is made, don't look back and second guess yourself. It was the right one for you.
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: Velcade or Revlimid maintenance therapy?
The prospect of going in for Velcade injections or IV infusions for the long haul was a negative in my book (after all, being able to do everything with pills would be so much nicer). But then I remember reading Coop's comment on doing his own SubQ Velcade shots and I asked my doc about this. He said it shouldn't be a problem should that day come.
https://myelomabeacon.org/forum/velcade-t1921.html
However, if you are also doing dex, there are some oncs that would argue that you can minimize its effects by delivering it via IV. However, I don't know if that same claim also applies to Medrol / prednisone?
Just something to consider.
https://myelomabeacon.org/forum/velcade-t1921.html
However, if you are also doing dex, there are some oncs that would argue that you can minimize its effects by delivering it via IV. However, I don't know if that same claim also applies to Medrol / prednisone?
Just something to consider.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
RETRACTION: Velcade or Revlimid maintenance therapy?
All.
Yesterday, I reported inaccurately that Dr. Robert Orlowski had suggested weekly Velcade as maintenance.
This statement is NOT true and Dr. Orlowski did not make that recommendation.
In addition, the context herein of using bortezomib as maintenance would only be applicable, in the specific case, for a patient who is deferring ASCT or perhaps even deferring stem cell mobilization. This is NOT a standard protocol for multiple myeloma maintenance!
The fact is that my community oncologist sent an e-mail to me in which he wrote, "He [Dr. Orlowski] actually thought weekly Velcade sub q would be the best for you." However, I consulted Dr. Orlowski after receiving that e-mail and discovered that Dr. Orlowski never made that suggestion. Unfortunately, I had already written the post of record.
I want to publicly clarify my error and apologize to Dr. Orlowski for my mistake. Although it was inadvertent, it does not excuse my using hearsay. Furthermore, I apologize to Dr. Orlowski personally for referencing him without my having received his permission.
I hope that this retraction will help correct any misinformation contained in yesterday's post.
Mark
Yesterday, I reported inaccurately that Dr. Robert Orlowski had suggested weekly Velcade as maintenance.
This statement is NOT true and Dr. Orlowski did not make that recommendation.
In addition, the context herein of using bortezomib as maintenance would only be applicable, in the specific case, for a patient who is deferring ASCT or perhaps even deferring stem cell mobilization. This is NOT a standard protocol for multiple myeloma maintenance!
The fact is that my community oncologist sent an e-mail to me in which he wrote, "He [Dr. Orlowski] actually thought weekly Velcade sub q would be the best for you." However, I consulted Dr. Orlowski after receiving that e-mail and discovered that Dr. Orlowski never made that suggestion. Unfortunately, I had already written the post of record.
I want to publicly clarify my error and apologize to Dr. Orlowski for my mistake. Although it was inadvertent, it does not excuse my using hearsay. Furthermore, I apologize to Dr. Orlowski personally for referencing him without my having received his permission.
I hope that this retraction will help correct any misinformation contained in yesterday's post.
Mark
Re: Velcade or Revlimid maintenance therapy?
Thanks for the clarification Mark!
Having said this, there is something to be said for investigating Velcade or another proteasome inhibitor for maintenance
Having said this, there is something to be said for investigating Velcade or another proteasome inhibitor for maintenance
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Velcade or Revlimid maintenance therapy?
Multibilly,
In my case, I will not delay stem cell mobilization but am still undecided on when to proceed with the actual ASCT.
For this case, Revlimid is an accepted regimen for maintenance. Long-term Revlimid dosing is myelosuppressive and that this could render future harvesting a challenge - perhaps insurmountably so - for those who choose to delay harvesting. However, if one decides to harvest prior to long-term Revlimid maintenance, this issue is irrelevant.
Mark
In my case, I will not delay stem cell mobilization but am still undecided on when to proceed with the actual ASCT.
For this case, Revlimid is an accepted regimen for maintenance. Long-term Revlimid dosing is myelosuppressive and that this could render future harvesting a challenge - perhaps insurmountably so - for those who choose to delay harvesting. However, if one decides to harvest prior to long-term Revlimid maintenance, this issue is irrelevant.
Mark
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