I am currently taking 15 mg of Revlimid 21 days on 7 off along with 20 mg of dexamethasone once a week for 3 weeks and a week off.
I am responding well to this treatment, with it keeping my numbers level for several months. My initial therapy was Velcade, Revlimid, and dexamethasone prior to a stem cell harvest, but we took out Velcade to see how I responded. Haven't made up my mind about a transplant yet. Still not convinced.
I have little side effects with the Revlimid and dex and would sign a contract today to make this the treatment for life if it kept everything as is. Is it possible to successfully stay on Revlimid and dex for several years?
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Re: How long can I stay on Revlimid and dexamethasone?
I have been on Revlimid, either 25 mg (induction) or 10 mg (maintenance), for close to three years. My myeloma specialist at Dana-Farber has said I can plan on it for the foreseeable future. He also is fond of telling me about one of his patients who has been on Revlimid maintenance for 15 years!
I am not using dex in deference to my wife. The personality effects are profound in my case, and as long as it's not indicated (and it isn't), I'm not using it.
I am not using dex in deference to my wife. The personality effects are profound in my case, and as long as it's not indicated (and it isn't), I'm not using it.
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gkevinphd - Name: Gkevinphd
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 57
Re: How long can I stay on Revlimid and dexamethasone?
Hello F:
If you search the ASH 2015 abstracts for the IFM study on early vs delayed autologous stem cell transplantation, I think your approach so far is quite close to the delayed arm. There is specific data as to what you might expect if you were the "average" patient. There is no way of knowing, however, ahead of time whether or not you would be the average, better or worse.
Good luck to you.
If you search the ASH 2015 abstracts for the IFM study on early vs delayed autologous stem cell transplantation, I think your approach so far is quite close to the delayed arm. There is specific data as to what you might expect if you were the "average" patient. There is no way of knowing, however, ahead of time whether or not you would be the average, better or worse.
Good luck to you.
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JPC - Name: JPC
Re: How long can I stay on Revlimid and dexamethasone?
I was wondering what, if any, long term effects are common with taking Revlimid over a long period of time. If my numbers stay stable, why not continue this path until a change occurs? It's a slow moving disease so once we see it trending the wrong way we can make an adjustment – transplant or different meds.
Re: How long can I stay on Revlimid and dexamethasone?
My mother has been on 10 mg Revlimid for 3 weeks and then one week off since 2012. She has dexamethasone on and off depending upon her kappa-lambda free light chain ratio. So far the main side effect she has is a decrease in her hemoglobin level. It remains around 9-10. The doctor thinks it's prolonged use of this drug that may have caused it. Also while on Revlimid, her WBC always drops below normal, around 3000-3600. The doctor then gives her break until they come back to normal.
When on dex she has a lot of side effects. She also had cataracts in both her eyes and some issues with her teeth, which her doctor says might be because of long term steroid use. I have also read about possibility of secondary cancers with prolonged use of Revlimid which is also concerning.
When on dex she has a lot of side effects. She also had cataracts in both her eyes and some issues with her teeth, which her doctor says might be because of long term steroid use. I have also read about possibility of secondary cancers with prolonged use of Revlimid which is also concerning.
Re: How long can I stay on Revlimid and dexamethasone?
I have just been pondering this same question. I've been on Revlimid for over 2 years, first with induction at 25 mg and now maintenance at 15 mg with 12 mg dexamethasone weekly. No stem cell transplant yet. It has kept my kappa free light chain numbers level. I'm high risk, so I know continuous maintenance is best (17p deletion high risk - the big dog, as they say). I wonder how long can I keep taking this without it doing more harm. Like you, I really have no real side effects.
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Janet1520
Re: How long can I stay on Revlimid and dexamethasone?
A brief reply to F's question on potential problems with long-term Revlimid. Revlimid extends progression-free survival, that is it lowers the chance of it coming back in a specific period of time (say 3 years). The decrease in odds is pretty significant. On the other hand, there is a slight increase in the chance of getting a different kind of cancer (second primary malignancy, or SPM). As I understand, however, if you add the two together, its cancer coming back in either case, and the net effect with Revlimid is that there is a much lower chance of cancer coming back in a specific period of time.
The progression-free survival advantage has been established for a number of years now. It is harder to show overall survival data in studies for a number of reasons (e.g., it takes a lot longer, for one), but studies shown in the last year seem to show a statistically significant difference in overall survival by about 20 months to near 10 years (for younger, fit, transplant-eligible patients). This included a slightly dated initial induction, so hopefully that will continue to move forward based on the newer drugs
The secondary cancer that might arise, I understand, is likely to be treatable (like multiple myeloma is). Two of the types that I have heard that come with Revlimid is skin cancer and breast cancer, both treatable if you are on it and it's caught early. I imagine that in a minority of these cancers that come back (which is a small fraction to begin with) you could get a so called "aggressive" cancer. Based on the odds, most doctors are leaning towards giving Revlimid maintenance until progression, but for the doctors who don't go along with this, I imagine this is the reason. Some doctors are of the opinion that getting to and maintaining stringent complete response (sCR) and minimal residual disease (MRD) negative status might be a basis to dial back or stop Revlimid maintenance.
Good luck. I know that there are other posters more knowledgeable on this issue than I am. If I do not understand this correctly, I would be glad to be so informed. Good luck.
The progression-free survival advantage has been established for a number of years now. It is harder to show overall survival data in studies for a number of reasons (e.g., it takes a lot longer, for one), but studies shown in the last year seem to show a statistically significant difference in overall survival by about 20 months to near 10 years (for younger, fit, transplant-eligible patients). This included a slightly dated initial induction, so hopefully that will continue to move forward based on the newer drugs
The secondary cancer that might arise, I understand, is likely to be treatable (like multiple myeloma is). Two of the types that I have heard that come with Revlimid is skin cancer and breast cancer, both treatable if you are on it and it's caught early. I imagine that in a minority of these cancers that come back (which is a small fraction to begin with) you could get a so called "aggressive" cancer. Based on the odds, most doctors are leaning towards giving Revlimid maintenance until progression, but for the doctors who don't go along with this, I imagine this is the reason. Some doctors are of the opinion that getting to and maintaining stringent complete response (sCR) and minimal residual disease (MRD) negative status might be a basis to dial back or stop Revlimid maintenance.
Good luck. I know that there are other posters more knowledgeable on this issue than I am. If I do not understand this correctly, I would be glad to be so informed. Good luck.
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JPC - Name: JPC
Re: How long can I stay on Revlimid and dexamethasone?
I don't know if I would use the word "slight" to describe the increased risk of secondary cancers from Revlimid maintenance. I believe the risk of developing a secondary cancer doubles or triples if you are on Revlimid maintenance after a stem cell transplant.
Many of the secondary cancers are in fact less aggressive cancers such as skin cancer. However, the major concern is the possibility of either myelodysplastic syndromes (MDS) or acute myeloid leukemia (AML) developing. These are aggressive diseases where the survival is usually less than a year after the diagnosis (when the diagnosis occurs as a second cancer in myeloma patients).
The symptoms of MDS and AML are low blood counts and low hemoglobin levels. Sound familiar? Yes, it's something we read about all the time here in the forum -- people commenting on how Revlimid has driven down their blood counts. In extreme cases, these low counts lead to a diagnosis of MDS or AML. In less extreme cases, the persistent low counts from extended Revlimid therapy make a patient more susceptible to infection, and they can limit how long the patient can be on treatment without having to take breaks to let their blood counts recover.
It is true that Revlimid maintenance therapy is increasingly the norm these days, particularly in the U.S. I'm not sure it's true, however, that maintenance until progression is the norm. I think many physicians are okay with ending maintenance after, say, one or two years.
There is no evidence, by the way, that Revlimid maintenance improves overall survival in patients with high-risk chromosomal abnormalities. In fact, the estimated impact of Revlimid maintenance on overall survival in high-risk patients is negative (although not statistically significant). See page 10 of this presentation from this summer's ASCO meeting:
https://myelomabeacon.org/docs/asco2016/8001.pdf
You'll see that the hazard ratio for overall survival is actually in favor of no maintenance ("control") in patients with "adverse-risk cytogenetics."
Many of the secondary cancers are in fact less aggressive cancers such as skin cancer. However, the major concern is the possibility of either myelodysplastic syndromes (MDS) or acute myeloid leukemia (AML) developing. These are aggressive diseases where the survival is usually less than a year after the diagnosis (when the diagnosis occurs as a second cancer in myeloma patients).
The symptoms of MDS and AML are low blood counts and low hemoglobin levels. Sound familiar? Yes, it's something we read about all the time here in the forum -- people commenting on how Revlimid has driven down their blood counts. In extreme cases, these low counts lead to a diagnosis of MDS or AML. In less extreme cases, the persistent low counts from extended Revlimid therapy make a patient more susceptible to infection, and they can limit how long the patient can be on treatment without having to take breaks to let their blood counts recover.
It is true that Revlimid maintenance therapy is increasingly the norm these days, particularly in the U.S. I'm not sure it's true, however, that maintenance until progression is the norm. I think many physicians are okay with ending maintenance after, say, one or two years.
There is no evidence, by the way, that Revlimid maintenance improves overall survival in patients with high-risk chromosomal abnormalities. In fact, the estimated impact of Revlimid maintenance on overall survival in high-risk patients is negative (although not statistically significant). See page 10 of this presentation from this summer's ASCO meeting:
https://myelomabeacon.org/docs/asco2016/8001.pdf
You'll see that the hazard ratio for overall survival is actually in favor of no maintenance ("control") in patients with "adverse-risk cytogenetics."
Re: How long can I stay on Revlimid and dexamethasone?
All very good points, Terry. One I will add to. You are absolutely correct that Revlimid maintenance did not help. Some people have taken that as an argument against maintenance. More recent studies, however, has shown that Revlimid maintenance, on the contrary, was not good enough by itself, and when maintenance was ramped up to Revlimid, Velcade, and dexamethasone at a maintenance level, or some other combo more than just Revlimid alone, the adverse prognoses of bad cytogenetic abnormalities (CA's) at that point started to be mitigated. So a little maintenance, good enough for standard risk, did not make any difference, but when it was ramped up to meet the need, then maintenance started to work.
Further for the recent data on Kyprolis from Dr. Jakubowiak in Chicago, his approach, using Kyprolis, Revlimid, and dexamethasone (KRD) consolidation and maintenance (up to two years) based on early data shows that you cannot tell the difference between most bad chromosomal abnormalities and standard risk. He has an older study with no stem cell transplantation and medium follow up is like 4 years, and progression-free survival has not been reached, but looks like it might be in the range of 6 or 7 years. His newer study includes autologous stem cell transplantation (ASCT) and based on early data, will be trending higher (better) than the earlier, no ASCT study. He reports in the later ASCT study, although data is early (and sample size is not huge), that he cannot tell any difference among almost all of the chromosomal abnormalities and standard risk in terms of depth of response, and early signals on progression-free survival.
I take your point that my use of the word "slight" increase may not be the best possible word. It is a tradeoff. You can have SPM's also without Revlimid maintenance. Studies have published been published showing the difference, and as I recall it increased the chance from something like 3% to 5% to in the range of 8% to 9% with Revlimid maintenance. If you are one of the unfortunate 4% or 5%, I am sure you are not comforted by the word "slight". The overall point is that the other side of the tradeoff is to prolong the time to relapse. Going forward, I wonder if Ninlaro (ixazomib) will work as well as Revlimid, but without the SPM risk.
Good luck to you.
Further for the recent data on Kyprolis from Dr. Jakubowiak in Chicago, his approach, using Kyprolis, Revlimid, and dexamethasone (KRD) consolidation and maintenance (up to two years) based on early data shows that you cannot tell the difference between most bad chromosomal abnormalities and standard risk. He has an older study with no stem cell transplantation and medium follow up is like 4 years, and progression-free survival has not been reached, but looks like it might be in the range of 6 or 7 years. His newer study includes autologous stem cell transplantation (ASCT) and based on early data, will be trending higher (better) than the earlier, no ASCT study. He reports in the later ASCT study, although data is early (and sample size is not huge), that he cannot tell any difference among almost all of the chromosomal abnormalities and standard risk in terms of depth of response, and early signals on progression-free survival.
I take your point that my use of the word "slight" increase may not be the best possible word. It is a tradeoff. You can have SPM's also without Revlimid maintenance. Studies have published been published showing the difference, and as I recall it increased the chance from something like 3% to 5% to in the range of 8% to 9% with Revlimid maintenance. If you are one of the unfortunate 4% or 5%, I am sure you are not comforted by the word "slight". The overall point is that the other side of the tradeoff is to prolong the time to relapse. Going forward, I wonder if Ninlaro (ixazomib) will work as well as Revlimid, but without the SPM risk.
Good luck to you.
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JPC - Name: JPC
Re: How long can I stay on Revlimid and dexamethasone?
Let's not confuse things here.
First of all, we're discussing Revlimid and dexamethasone maintenance here. Not Kyprolis, Revlimid, and dexamethasone. My comments were focused on the data related to Revlimid maintenance, which the original question was about.
Second, the Jakubowiak KRD and transplantation study is a relatively small (76 patients), single-arm study. It's not a randomized controlled trial testing maintenance therapy versus no maintenance therapy. There are no patients in the study that are not receiving any maintenance therapy.
So we have no way of knowing from the Jakubowiak study whether KRD maintenance post transplant is a superior strategy in terms of overall survival compared, for example, to no KRD maintenance but KRD salvage therapy at relapse.
Even if it is true that the high-risk patients in the transplantation and KRD study have similar outcomes as the standard-risk patients, that tells us nothing about whether KRD maintenance is superior to a KRD-salvage-at-relapse strategy.
Note, as well, that the relatively small number of patients in the transplantation and KRD trial (76 patients) makes it difficult for any survival differences between patient subgroups to be statistically significant.
First of all, we're discussing Revlimid and dexamethasone maintenance here. Not Kyprolis, Revlimid, and dexamethasone. My comments were focused on the data related to Revlimid maintenance, which the original question was about.
Second, the Jakubowiak KRD and transplantation study is a relatively small (76 patients), single-arm study. It's not a randomized controlled trial testing maintenance therapy versus no maintenance therapy. There are no patients in the study that are not receiving any maintenance therapy.
So we have no way of knowing from the Jakubowiak study whether KRD maintenance post transplant is a superior strategy in terms of overall survival compared, for example, to no KRD maintenance but KRD salvage therapy at relapse.
Even if it is true that the high-risk patients in the transplantation and KRD study have similar outcomes as the standard-risk patients, that tells us nothing about whether KRD maintenance is superior to a KRD-salvage-at-relapse strategy.
Note, as well, that the relatively small number of patients in the transplantation and KRD trial (76 patients) makes it difficult for any survival differences between patient subgroups to be statistically significant.
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