I was on Revlimid only (no dex) for three years after my autologoust stem cell transplant (ASCT), which I had in February 2009. I took anywhere between 10-15 mg from July 2009 to July 2012. I was considered a high risk patient, in that I had the chromosomal translocation t(14;16), which has been associated with a more aggressive type of multiple myeloma.
I was in complete remission for the 3 years I was on Revlimid. My myeloma specialist thought I should go off of Revlimid because I was having problems with increased bronchial infections and the concern about the increased risk for secondary cancers in Revlimid users. My main side effects with Revlimid were fatigue and GI issues.
I was hesitant to go off of Revlimid, as I had maintained remission for the entire time I was on it. But go off of it I did.
I had a bone marrow biopsy in Oct. 2012, which found no myeloma cells. My oncologist told me I was considered "minimal residual disease negative," at least based on testing at that time. I am currently tested every 4 months utilizing blood markers, especially free light chains, as I have lambda light chain type myeloma. I had my last check up earlier in January and continue to be in stringent complete remission.
Forums
Re: Should I quit Revlimid and dex maintenance?
Gboyer,
I meant to follow-up with you after my brief comment earlier. I'm being treated at Colorado Blood Cancer Institute (CBCI) in Denver. They have 100's of multiple myeloma patients. I've got IgG multiple myeloma with high kappa light chains. I had a SCT two years ago which got my light chains down to single digits. This is not a complete response (CR), but very close. Based on doctor's advice, I decided to do two years of maintenance of Revlimid.
CBCI does not believe in the use of long-term steroids such as dex. Long-term use can cause organ damage, etc. I confirmed this with Mayo Clinic as a second opinion. I don't remember all the details of why you shouldn't take the dex for maintenance, but I did get confirmation from two sources that it was not a good idea for me to do so.
Now that I'm nearing my two year mark for maintenance, I'm presented with two options, neither of which can be confirmed with empirical evidence that one is better than the other.
Option 1 - Stay on maintenance, (10 mg) Revlimid
There has been some recent studies that suggest that staying on maintenance can increase your time to relapse. It's important to note that all my sources say there is 100% chance of relapse. There has been no evidence to suggest this option increases overall survival time.
The cons to this option is that you continue to suffer from side effects such as fatigue, chemo brain, and diarrhea. Your multiple myeloma will also become resistant to the Revlimid, making it useless as a treatment option in the future. Your chances of catching a secondary cancer double staying on the Revlimid.
Option 2 - Stop all maintenance
This was more or less the standard practice to use a two year maintenance window. This option of course gives you the most freedom from the side effects of the drugs. And the financial benefit can not be ignored for those of us that have to pay a substantial copay for Revlimid.
The cons for this option is that you may relapse sooner than if you stayed on maintenance.
I choose to stop all maintenance as I just really need a break from the drugs. My multiple myeloma is easily tracked with regular blood tests to watch my light chains. In the event my light chains trend upwards, I'll need to hit the Revlimid again. I'm also very concerned about staying on the Revlimid and my body becoming tolerant of the Revlimid, making it useless in future treatment plans. Revlimid has been very effective for me and I'd like to keep it as a option in the future.
Good luck to you, Jerry.
I meant to follow-up with you after my brief comment earlier. I'm being treated at Colorado Blood Cancer Institute (CBCI) in Denver. They have 100's of multiple myeloma patients. I've got IgG multiple myeloma with high kappa light chains. I had a SCT two years ago which got my light chains down to single digits. This is not a complete response (CR), but very close. Based on doctor's advice, I decided to do two years of maintenance of Revlimid.
CBCI does not believe in the use of long-term steroids such as dex. Long-term use can cause organ damage, etc. I confirmed this with Mayo Clinic as a second opinion. I don't remember all the details of why you shouldn't take the dex for maintenance, but I did get confirmation from two sources that it was not a good idea for me to do so.
Now that I'm nearing my two year mark for maintenance, I'm presented with two options, neither of which can be confirmed with empirical evidence that one is better than the other.
Option 1 - Stay on maintenance, (10 mg) Revlimid
There has been some recent studies that suggest that staying on maintenance can increase your time to relapse. It's important to note that all my sources say there is 100% chance of relapse. There has been no evidence to suggest this option increases overall survival time.
The cons to this option is that you continue to suffer from side effects such as fatigue, chemo brain, and diarrhea. Your multiple myeloma will also become resistant to the Revlimid, making it useless as a treatment option in the future. Your chances of catching a secondary cancer double staying on the Revlimid.
Option 2 - Stop all maintenance
This was more or less the standard practice to use a two year maintenance window. This option of course gives you the most freedom from the side effects of the drugs. And the financial benefit can not be ignored for those of us that have to pay a substantial copay for Revlimid.
The cons for this option is that you may relapse sooner than if you stayed on maintenance.
I choose to stop all maintenance as I just really need a break from the drugs. My multiple myeloma is easily tracked with regular blood tests to watch my light chains. In the event my light chains trend upwards, I'll need to hit the Revlimid again. I'm also very concerned about staying on the Revlimid and my body becoming tolerant of the Revlimid, making it useless in future treatment plans. Revlimid has been very effective for me and I'd like to keep it as a option in the future.
Good luck to you, Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Should I quit Revlimid and dex maintenance?
I was on Revlimid maintenance for two years, reducing dosage to 2.5 mg for the last six months, and maintaining a partial remission: 0.2 g/dL (2 g/L) M-spike, no active lesions as per PET/CT scan, and no myeloma symptoms.
I wrestle every day whether or not to stay on maintenance for all of the reasons already stated (quality of life, resistance, permanent side effects, etc). I really do think it comes down to a flip of the coin.
I wrestle every day whether or not to stay on maintenance for all of the reasons already stated (quality of life, resistance, permanent side effects, etc). I really do think it comes down to a flip of the coin.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Should I quit Revlimid and dex maintenance?
I just read a study published on September 4, 2014 in the New England Journal of Medicine comparing auto SCT vs MPR (melphalan, prednisone, and Revlimid); this is one of the few studies I have heard of that compares SCT to non-SCT after induction and then also compared Revlimid maintenance to no maintenance drugs.
Before randomization into the groups, patients had comparable responses to induction therapy (Revlimid and Dex). One of the striking aspects of this study was the significant benefit (median of 2 years longer progression free survival, I think) for those who went on Revlimid maintenance following SCT. The group that did the worst of all, both in terms of speed of relapse and survival, were those who were non-SCT on MPR and then did no maintenance.
Yes, this is one study, and yes they were using an older regimen with melphalan in the non-SCT group, so we are still waiting and anticipating results of more modern comparisons, but this information may also be helpful as all of us struggle with these difficult decisions.
I need to do more investigation of long-term dex use since I have been focused on my decision right now about SCT or no SCT, but I thought this information might be helpful.
You also have to be a little cautious about how they interpret overall survival because many of the studies report differences in progression free survival (slowed rate of relapse) but no differences in overall survival, and I think that depends to a great deal on how long the follow-up period lasts.
For example, in this study, they found no significant differences in overall survival, but the median follow-up was only 51 months. If you look at the curves, there are indications that both SCT and maintenance groups were tending to diverge (in terms of better survival) than the other groups, but this did not begin to happen until after about 2 years. Of course, we don't know what another 3-4 year follow-up might have shown, but if that pattern were to continue, I would think there certainly would be a measurable survival difference.
I will say that it is very inspirational and hopeful to read here on the Beacon the stories of many of you who have been able to get through these ordeals and are doing well. It warms my heart and helps me in my daily struggles. Thank you to all of you who share your stories.
Before randomization into the groups, patients had comparable responses to induction therapy (Revlimid and Dex). One of the striking aspects of this study was the significant benefit (median of 2 years longer progression free survival, I think) for those who went on Revlimid maintenance following SCT. The group that did the worst of all, both in terms of speed of relapse and survival, were those who were non-SCT on MPR and then did no maintenance.
Yes, this is one study, and yes they were using an older regimen with melphalan in the non-SCT group, so we are still waiting and anticipating results of more modern comparisons, but this information may also be helpful as all of us struggle with these difficult decisions.
I need to do more investigation of long-term dex use since I have been focused on my decision right now about SCT or no SCT, but I thought this information might be helpful.
You also have to be a little cautious about how they interpret overall survival because many of the studies report differences in progression free survival (slowed rate of relapse) but no differences in overall survival, and I think that depends to a great deal on how long the follow-up period lasts.
For example, in this study, they found no significant differences in overall survival, but the median follow-up was only 51 months. If you look at the curves, there are indications that both SCT and maintenance groups were tending to diverge (in terms of better survival) than the other groups, but this did not begin to happen until after about 2 years. Of course, we don't know what another 3-4 year follow-up might have shown, but if that pattern were to continue, I would think there certainly would be a measurable survival difference.
I will say that it is very inspirational and hopeful to read here on the Beacon the stories of many of you who have been able to get through these ordeals and are doing well. It warms my heart and helps me in my daily struggles. Thank you to all of you who share your stories.
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dranton - Name: Anton Tolman
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August, 2014
- Age at diagnosis: 51
Re: Should I quit Revlimid and dex maintenance?
Thanks for your posting, Anton.
Just as a heads up, there was an extended forum discussion of the NEJM article that you mentioned not long after it came out. You can find it here:
"NEJM article on transplantation & Revlimid maintenance," forum disc. started Sep 4, 2014.
Also, as you might expect, maintenance therapy is a subject that the Beacon has covered regularly in its news articles. This link will take you to a list of news articles on the subject:
Maintenance therapy - multiple myeloma
We're glad to hear that The Beacon has been helpful to you thus far, and we hope it continues to be so going forward.
Just as a heads up, there was an extended forum discussion of the NEJM article that you mentioned not long after it came out. You can find it here:
"NEJM article on transplantation & Revlimid maintenance," forum disc. started Sep 4, 2014.
Also, as you might expect, maintenance therapy is a subject that the Beacon has covered regularly in its news articles. This link will take you to a list of news articles on the subject:
Maintenance therapy - multiple myeloma
We're glad to hear that The Beacon has been helpful to you thus far, and we hope it continues to be so going forward.
Re: Should I quit Revlimid and dex maintenance?
Dear all,
The duration of Revlimid maintenance remains a hotly debated topic. I think all would agree that at least 2 years of maintenance Revlimid is associated with longer durations of remission for patients. In the post-autologous stem cell transplant setting, we have 2 studies, both of which demonstrated impressive gains in remission durability with the use of Revlimid. However, the IFM study run out of France did not show an overall survival advantage, whereas the US study did.
One of the more plausible explanations for the difference is the fact that a sizable number of patients in the US study already had experience with Revlimid as part of their initial induction therapy. As such, patients who tolerated Revlimid well during induction therapy and had good responses would have been more likely to have participated in the study. Why have a patient go on a Revlimid maintenance therapy study if you already know they did not respond to their initial Revlimid-dexamethasone therapy or tolerated it poorly? The patients in the French study did not have Revlimid as part of their initial therapy.
As others have suggested in this thread, the decision should be individualized for now. Issues that need to be discussed with your oncologist regarding the use of Revlimid maintenance therapy long-term (greater than 2 years) include the nature of the multiple myeloma at initial diagnosis (Was it high risk? How clinically aggressive was the disease at diagnosis? Was the patient suffering from incapacitating bone pain or kidney failure?), side effects of ongoing Revlimid therapy, the financial burden of indefinite therapy, and treatment goals of the patient.
For those patients who have known Revlimid-responsive disease and tolerate it well, especially those with biologically or clinically aggressive disease, I believe a strong argument can be made for longer-term therapy. Certainly, we will need to keep a close eye on late term toxicities of therapy beyond 2 years. For example, does the risk of secondary cancers continue to increase beyond 2 years of therapy, or does it level out?
There are ongoing randomized studies that will hopefully answer this issue definitively. At the end of the day, whether 2 years or more, remissions are more durable with both approaches.
With regards to the dexamethasone issue, there is a smaller, randomized study demonstrating that the incorporation of prednisone (another steroid) with Revlimid seems to produce more durable remissions in the maintenance setting, as well. As such, an argument could be made for incorporation of a steroid.
Nonetheless, long-term steroid use can be problematic, as others have posted in this thread, and the bulk of the Revlimid maintenance data are with its use alone and not with other agents. As such, one could argue to omit the steroid in the context of long-term Revlimid dosing.
Again, ongoing studies will provide more clarity to this issue over time.
I hope this helps. Thanks!
Pete V.
The duration of Revlimid maintenance remains a hotly debated topic. I think all would agree that at least 2 years of maintenance Revlimid is associated with longer durations of remission for patients. In the post-autologous stem cell transplant setting, we have 2 studies, both of which demonstrated impressive gains in remission durability with the use of Revlimid. However, the IFM study run out of France did not show an overall survival advantage, whereas the US study did.
One of the more plausible explanations for the difference is the fact that a sizable number of patients in the US study already had experience with Revlimid as part of their initial induction therapy. As such, patients who tolerated Revlimid well during induction therapy and had good responses would have been more likely to have participated in the study. Why have a patient go on a Revlimid maintenance therapy study if you already know they did not respond to their initial Revlimid-dexamethasone therapy or tolerated it poorly? The patients in the French study did not have Revlimid as part of their initial therapy.
As others have suggested in this thread, the decision should be individualized for now. Issues that need to be discussed with your oncologist regarding the use of Revlimid maintenance therapy long-term (greater than 2 years) include the nature of the multiple myeloma at initial diagnosis (Was it high risk? How clinically aggressive was the disease at diagnosis? Was the patient suffering from incapacitating bone pain or kidney failure?), side effects of ongoing Revlimid therapy, the financial burden of indefinite therapy, and treatment goals of the patient.
For those patients who have known Revlimid-responsive disease and tolerate it well, especially those with biologically or clinically aggressive disease, I believe a strong argument can be made for longer-term therapy. Certainly, we will need to keep a close eye on late term toxicities of therapy beyond 2 years. For example, does the risk of secondary cancers continue to increase beyond 2 years of therapy, or does it level out?
There are ongoing randomized studies that will hopefully answer this issue definitively. At the end of the day, whether 2 years or more, remissions are more durable with both approaches.
With regards to the dexamethasone issue, there is a smaller, randomized study demonstrating that the incorporation of prednisone (another steroid) with Revlimid seems to produce more durable remissions in the maintenance setting, as well. As such, an argument could be made for incorporation of a steroid.
Nonetheless, long-term steroid use can be problematic, as others have posted in this thread, and the bulk of the Revlimid maintenance data are with its use alone and not with other agents. As such, one could argue to omit the steroid in the context of long-term Revlimid dosing.
Again, ongoing studies will provide more clarity to this issue over time.
I hope this helps. Thanks!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Should I quit Revlimid and dex maintenance?
Thanks, Dr. Voorhees.
The question I, and others, have is: Would Revlimid be effective again upon disease progression, after a two-year successful maintenance and then a drug holiday until progression?
Coach Hoke
The question I, and others, have is: Would Revlimid be effective again upon disease progression, after a two-year successful maintenance and then a drug holiday until progression?
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Should I quit Revlimid and dex maintenance?
Dear Coach,
This is a great question. This may seem like a cop out, but we do need additional prospective data to get a more quantifiable answer to this question. If Revlimid has maintained disease control for 2 years in the maintenance setting, this would predict that Revlimid therapy upon re-challenge would be successful in many instances.
The fact that survival in the French study was equivalent and two Revlimid studies in non-transplant patients showed similar survival (the FIRST study of Revlimid-dex for 18 months vs. indefinite Revlimid-dex, and the Revlimid maintenance study after melphalan-prednisone +/- Revlimid) would suggest that treatment for those who did not receive continual therapy fared well with treatment at the time of disease progression, thus allowing comparable survival between the groups of patients.
However, most of us would treat the relapse with something more than just a maintenance dose of Revlimid alone (for example, Revlimid-dexamethasone or Kyprolis [carfilzomib]-Revlimid-dexamethasone, based on the recently published ASPIRE data). Or, for those of us who are monoclonal antibody enthusiasts, Revlimid-dexamethasone-elotuzumab, or Revlimid-dexamethasone-daratumumab once they are available!).
Again, this is a complicated topic with many issues to consider. The more you know going into the decision, the better. Knowledge is power!
Thanks!
Pete V.
This is a great question. This may seem like a cop out, but we do need additional prospective data to get a more quantifiable answer to this question. If Revlimid has maintained disease control for 2 years in the maintenance setting, this would predict that Revlimid therapy upon re-challenge would be successful in many instances.
The fact that survival in the French study was equivalent and two Revlimid studies in non-transplant patients showed similar survival (the FIRST study of Revlimid-dex for 18 months vs. indefinite Revlimid-dex, and the Revlimid maintenance study after melphalan-prednisone +/- Revlimid) would suggest that treatment for those who did not receive continual therapy fared well with treatment at the time of disease progression, thus allowing comparable survival between the groups of patients.
However, most of us would treat the relapse with something more than just a maintenance dose of Revlimid alone (for example, Revlimid-dexamethasone or Kyprolis [carfilzomib]-Revlimid-dexamethasone, based on the recently published ASPIRE data). Or, for those of us who are monoclonal antibody enthusiasts, Revlimid-dexamethasone-elotuzumab, or Revlimid-dexamethasone-daratumumab once they are available!).
Again, this is a complicated topic with many issues to consider. The more you know going into the decision, the better. Knowledge is power!
Thanks!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Should I quit Revlimid and dex maintenance?
Thanks again, Dr. Voorhees.
It seems to me that it doesn't make a lot of sense to continue Revlimid maintenance indefinitely if it will still work at the time of disease progression (even if we add dex and Velcade or any other such combos).
Coach Hoke
It seems to me that it doesn't make a lot of sense to continue Revlimid maintenance indefinitely if it will still work at the time of disease progression (even if we add dex and Velcade or any other such combos).
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
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