My wife was on Revlimid + dex maintenance for almost 2 years after her autologous stem cell transplant (ASCT). This kept her stable. About two months ago, her multiple myeloma doc advised to stop dex, leaving only 15 mg Revlimid. Around the same time, her WBC and Abs. Neut. started steadily decrease and her FLC climbed.
I asked the doc if stopping dex may have caused Revlimid to be less efficient. She said "No, probably Revlimid doesn't work anymore, and we should think to change treatment".
Still, I'm not totally convinced, and my question is: Has anybody else had such an experience, with Revlimid not being effective without dex?
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Re: Revlimid not working without dex
Itzhakk
I saw my oncologist/hematologist yesterday for my 22-month post-ASCT check up. During the course of our discussions, he stated that following a recent training on the latest research and recommendations on the best treatments and follow-up treatments for myeloma, he came away more confused and uncertain as to what the best approaches actually are.
Normally, having a specialist tell you that he really doesn't know what the best course of treatment for your disease is, would be, well, disconcerting, to say the least. But with myeloma treatment there really are no totally clear cut answers. I was actually very relieved to hear him say that. Despite my best and very concerted efforts to research, study, and understand my disease and the available treatment options, I often come away more befuddled than before I started.
This lack of clarity as to the best protocols leaves a lot of room for experimentation, personal input, and decision making based on individual responses to different treatment regimens. This scenario can be terrifying or empowering, or both. Believe me, I have experienced all three in equal measure!
With all of that said, the best I can offer pertaining to your question is the process I would go through to, hopefully, arrive at the best course going forward. So first of all, 2 years is a very long time to be on any treatment protocol, much less with drugs as powerful as Revlimid and dex. In both cases, the potential side effects are extreme.
Additionally, myeloma is exceedingly cunning and able to develop end runs around the best possible treatments available (i.e., it mutates). The longer you're on any given treatment combination, the greater the potential for mutation. When viewed in concert--potential mutations and potential side effects--your specialist's decision to remove your wife from the dex seems both prudent and judicious.
I would suggest to you that your wife's seeming setback is actually an opportunity to try one of the newer drug combinations that might not have been justifiable (from an insurance perspective) otherwise, and the fact that the two events--the removal of dex, and the decrease in blood components--as coincidental, perhaps even providential.
My best wishes are with you and your wife.
Aloha
Daniel
I saw my oncologist/hematologist yesterday for my 22-month post-ASCT check up. During the course of our discussions, he stated that following a recent training on the latest research and recommendations on the best treatments and follow-up treatments for myeloma, he came away more confused and uncertain as to what the best approaches actually are.
Normally, having a specialist tell you that he really doesn't know what the best course of treatment for your disease is, would be, well, disconcerting, to say the least. But with myeloma treatment there really are no totally clear cut answers. I was actually very relieved to hear him say that. Despite my best and very concerted efforts to research, study, and understand my disease and the available treatment options, I often come away more befuddled than before I started.
This lack of clarity as to the best protocols leaves a lot of room for experimentation, personal input, and decision making based on individual responses to different treatment regimens. This scenario can be terrifying or empowering, or both. Believe me, I have experienced all three in equal measure!
With all of that said, the best I can offer pertaining to your question is the process I would go through to, hopefully, arrive at the best course going forward. So first of all, 2 years is a very long time to be on any treatment protocol, much less with drugs as powerful as Revlimid and dex. In both cases, the potential side effects are extreme.
Additionally, myeloma is exceedingly cunning and able to develop end runs around the best possible treatments available (i.e., it mutates). The longer you're on any given treatment combination, the greater the potential for mutation. When viewed in concert--potential mutations and potential side effects--your specialist's decision to remove your wife from the dex seems both prudent and judicious.
I would suggest to you that your wife's seeming setback is actually an opportunity to try one of the newer drug combinations that might not have been justifiable (from an insurance perspective) otherwise, and the fact that the two events--the removal of dex, and the decrease in blood components--as coincidental, perhaps even providential.
My best wishes are with you and your wife.
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Revlimid not working without dex
It seems logical to me that dex isn't included in treatment regimens just for giggles! In fact, I have read several studies that have demonstrated that including dex enables the chemo drug to work much better. It's a known fact that steroids prevent our immune systems from working as intended, and the theory is that it also inhibits pathways that would diminish the chemo drug's ability to perform its job.
As another example, you may have noted that Tylenol is often packaged with pain killing drugs. That's because it enhances the action of the pain drug that it's included with to the point where the combination works better than the two doses together should. The same seems to be true of dex and the chemo drugs that it's paired with. In fact, dex by itself was initially used as a treatment for multiple myeloma by itself.
Studies have also demonstrated that certain combination of drugs work well together. My initial treatment was a regimen known as RVD which included Revlimid, Velcade, and dex taken together. Maintenance regimens are usually one cancer drug along with a steroid. Dex seems to be a standard because it is extremely powerful and also inexpensive.
Confusion abounds in the treatment of multiple myeloma, and it's really about trying the things available until you find one that works for you. There is a newer generation of Revlimid that works even when the original version no longer works. I don't think I've ever head an oncologist dismiss dex as the one you mentioned did. Even though it has nasty side effects, it seems to be a valuable partner in the fight against multiple myeloma.
Just one myeloma patient's opinion.
John.
As another example, you may have noted that Tylenol is often packaged with pain killing drugs. That's because it enhances the action of the pain drug that it's included with to the point where the combination works better than the two doses together should. The same seems to be true of dex and the chemo drugs that it's paired with. In fact, dex by itself was initially used as a treatment for multiple myeloma by itself.
Studies have also demonstrated that certain combination of drugs work well together. My initial treatment was a regimen known as RVD which included Revlimid, Velcade, and dex taken together. Maintenance regimens are usually one cancer drug along with a steroid. Dex seems to be a standard because it is extremely powerful and also inexpensive.
Confusion abounds in the treatment of multiple myeloma, and it's really about trying the things available until you find one that works for you. There is a newer generation of Revlimid that works even when the original version no longer works. I don't think I've ever head an oncologist dismiss dex as the one you mentioned did. Even though it has nasty side effects, it seems to be a valuable partner in the fight against multiple myeloma.
Just one myeloma patient's opinion.
John.
Re: Revlimid not working without dex
Itzhakk,
This is a really interesting question. I can see how you would think about cause-and-effect since her numbers started to go south when removing the dex from the regimen.
What dose of dex was you wife on?
Long term steroid use does have negative consequences, but should you really switch to a different maintenance drug if RD sill potentially has legs? Might you consider a trial period of re-introducing low-dose dex to an RD maintenance regimen to at least see if the numbers turn back around before making a switch to an altogether new drug? In the meantime, you could do more research and maybe get a second opinion about this drug switch?
Be clear that I'm just offering up some angles to consider, rather than solid advice. I'm not sure I've ever read anything about this kind of situation before.
This is a really interesting question. I can see how you would think about cause-and-effect since her numbers started to go south when removing the dex from the regimen.
What dose of dex was you wife on?
Long term steroid use does have negative consequences, but should you really switch to a different maintenance drug if RD sill potentially has legs? Might you consider a trial period of re-introducing low-dose dex to an RD maintenance regimen to at least see if the numbers turn back around before making a switch to an altogether new drug? In the meantime, you could do more research and maybe get a second opinion about this drug switch?
Be clear that I'm just offering up some angles to consider, rather than solid advice. I'm not sure I've ever read anything about this kind of situation before.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Revlimid not working without dex
My husband is on 5 mg of Revlimid and just reduced his dex dose by half so we will see how it goes, but in discussing this with our nurses, they said that there are a couple of patients who tried to cut back on the dex or stop taking it altogether and saw their numbers increase so they added it back in.
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Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: Revlimid not working without dex
Hi Itzhakk,
I think Revlimid alone vs. Revlimid + dex for maintenance therapy is another one of the many areas of myeloma treatment where there are differing opinions.
For what it is worth, I am on Revlimid (alone) maintenance. I've been on this treatment since September 2013, and the plan is to continue until this September, which will be 2 years, assuming all continues to go well. My dose is currently 10 mg / day. Earlier in my treatment it was 15 mg / day, but my myeloma specialist reduced it several months ago because of low platelets and WBC.
Awhile back I asked my myeloma specialist about his thoughts on Revlimid + dex as maintenance therapy. He replied, "I don't consider that to be maintenance therapy."
In your case, though, I think Multibilly's suggestion to try Revlimid + dex again makes a lot of sense. Like Multibilly, I am not a doctor.
Best wishes and please keep us posted on how things go.
Mike
I think Revlimid alone vs. Revlimid + dex for maintenance therapy is another one of the many areas of myeloma treatment where there are differing opinions.
For what it is worth, I am on Revlimid (alone) maintenance. I've been on this treatment since September 2013, and the plan is to continue until this September, which will be 2 years, assuming all continues to go well. My dose is currently 10 mg / day. Earlier in my treatment it was 15 mg / day, but my myeloma specialist reduced it several months ago because of low platelets and WBC.
Awhile back I asked my myeloma specialist about his thoughts on Revlimid + dex as maintenance therapy. He replied, "I don't consider that to be maintenance therapy."
In your case, though, I think Multibilly's suggestion to try Revlimid + dex again makes a lot of sense. Like Multibilly, I am not a doctor.
Best wishes and please keep us posted on how things go.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Revlimid not working without dex
Hi itzhakk
You may wish to take a look at (page98)
http://szpiczak.org/lang/szpiczak/pdf/Multiple_Myeloma_Diagnosis_and_Treatment_2014.pdf
You may wish to take a look at (page98)
http://szpiczak.org/lang/szpiczak/pdf/Multiple_Myeloma_Diagnosis_and_Treatment_2014.pdf
Re: Revlimid not working without dex
Itzhakk,
I am in a similar circumstance as your wife, and you raise a good question.
I started maintenance therapy on Revlimid 10mg. Then it was raised to 25 mg and dex added at 40 mg after my kappa light chains started to rise. This sent my kappa number well into the normal range again. Later the dex was reduced to 20 mg and then removed last January as I was having increasing difficulties with the dex side effects. So I have been on just 25 mg of Revlimid the last three months. My kappa light chains started increasing again in February at a much higher rate than they did before after being off dex for just one month. So like with your wife, the question is what to do next?
Multibilly's points come to mind. Dex could be added back in but is this a sign that some time ago Revlimid became no longer effective at all and it has really been just the dex that in my maintenance therapy that was doing any good? Should I add the dex back in and try to get more mileage out of Revlimid ? How would I ever know of it is the dex alone that was still working or if the dex and Revlimid are working together? Is it time to make a drug switch for maintenance therapy?
These are situations where the experience of a myeloma specialist could really be beneficial but even then there could be differences of opinion. There really is not a lot of time to find out through trial and error before I may be facing a serious relapse.
I have an appointment with my oncologist Monday to go over all this.
I am in a similar circumstance as your wife, and you raise a good question.
I started maintenance therapy on Revlimid 10mg. Then it was raised to 25 mg and dex added at 40 mg after my kappa light chains started to rise. This sent my kappa number well into the normal range again. Later the dex was reduced to 20 mg and then removed last January as I was having increasing difficulties with the dex side effects. So I have been on just 25 mg of Revlimid the last three months. My kappa light chains started increasing again in February at a much higher rate than they did before after being off dex for just one month. So like with your wife, the question is what to do next?
Multibilly's points come to mind. Dex could be added back in but is this a sign that some time ago Revlimid became no longer effective at all and it has really been just the dex that in my maintenance therapy that was doing any good? Should I add the dex back in and try to get more mileage out of Revlimid ? How would I ever know of it is the dex alone that was still working or if the dex and Revlimid are working together? Is it time to make a drug switch for maintenance therapy?
These are situations where the experience of a myeloma specialist could really be beneficial but even then there could be differences of opinion. There really is not a lot of time to find out through trial and error before I may be facing a serious relapse.
I have an appointment with my oncologist Monday to go over all this.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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