Hello Maro:
I am being treated at one of the best hospital in the USA. Hematologists there are well known as they have several research papers on multiple myeloma.
I was staged stage IIA in February 2015.
I am on my tenth cycle of Revlimid and dexamethasone - double not triple by a prominent hematologist. I was considered for research but I declined as it required my presence close to hospital for three months. So, they kept on Revlimid plus dex.
I hope my experience helps you in making decision.
Forums
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Is this a good response to Revlimid and dexamethasone?
Hi Maro,
My wife's response was similar with Revlimid and dexamethasone, achieved a very good partial response (VGPR), then added Velcade to the mix. Didn't really change anything. She's at 0.3 g/dL on the M protein. Scheduled for a auto stem cell transplant next week. I actually think the Revlimid-dexamethasone is a good protocol.
Best of luck!
My wife's response was similar with Revlimid and dexamethasone, achieved a very good partial response (VGPR), then added Velcade to the mix. Didn't really change anything. She's at 0.3 g/dL on the M protein. Scheduled for a auto stem cell transplant next week. I actually think the Revlimid-dexamethasone is a good protocol.
Best of luck!
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
Re: Is this a good response to Revlimid and dexamethasone?
Maro,
I echo JPC's comments as usual. I'm very fortunate for the options and choices available with my insurance and current health. Continue being an advocate.
For the record, I generally fall into the "more is better" category (which isn't always right).
I echo JPC's comments as usual. I'm very fortunate for the options and choices available with my insurance and current health. Continue being an advocate.
For the record, I generally fall into the "more is better" category (which isn't always right).
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Is this a good response to Revlimid and dexamethasone?
@ MMFeb16,15 - Thank you for your feedback regarding Revlimid + dex. Could you please share with me the way that you have responded so far to this combo?
@ JohnBoy5456 - Thanks for your reply. One question, why go for a stem cell transplant if the current response is close to bringing her into a complete response (CR)? Why not pursue and see if the meds alone can bring her into a CR?
@ JPC - I am starting to understand your point of view. I think I have been missing the point though. Here's my question: Why do you believe that it is best to go "hard" at first with a triplet, for instance?
Is it because it is believed to be really better to have a CR rather than a 95% VGPR response? If the answer to that is "yes," then I can begin to fully get your point.
Up to this moment, I seem to have been understanding that one can have a CR and relapse quicker than someone who had a VGPR.. Am I correct? Of course it makes sense that someone who achieves a CR probably has better chances of progression-free survival than someone with VGPR. But is it statistically worth the risk of overdosing on toxicity (triplets, stem cell transplant, ...) for that small path remaining reduction to reach CR if you are, for instance, already reaching say a 95% reduction?
In short, is the objective really to reach complete response regardless of the means used? Regardless of the toxicity needed? Will it guarantee a better overall survival and progression-free survival?
These questions probably explain why I am asking JohnBoy5456 why go on with a stem cell transplant and all the related toxicity if that won't guarantee a better progression-free survival.
Sorry if I'm asking too many questions, but this key question is what seems to have been triggering the confusion for me. Can you clarify this part for me?
thanks,
Maro
@ JohnBoy5456 - Thanks for your reply. One question, why go for a stem cell transplant if the current response is close to bringing her into a complete response (CR)? Why not pursue and see if the meds alone can bring her into a CR?
@ JPC - I am starting to understand your point of view. I think I have been missing the point though. Here's my question: Why do you believe that it is best to go "hard" at first with a triplet, for instance?
Is it because it is believed to be really better to have a CR rather than a 95% VGPR response? If the answer to that is "yes," then I can begin to fully get your point.
Up to this moment, I seem to have been understanding that one can have a CR and relapse quicker than someone who had a VGPR.. Am I correct? Of course it makes sense that someone who achieves a CR probably has better chances of progression-free survival than someone with VGPR. But is it statistically worth the risk of overdosing on toxicity (triplets, stem cell transplant, ...) for that small path remaining reduction to reach CR if you are, for instance, already reaching say a 95% reduction?
In short, is the objective really to reach complete response regardless of the means used? Regardless of the toxicity needed? Will it guarantee a better overall survival and progression-free survival?
These questions probably explain why I am asking JohnBoy5456 why go on with a stem cell transplant and all the related toxicity if that won't guarantee a better progression-free survival.
Sorry if I'm asking too many questions, but this key question is what seems to have been triggering the confusion for me. Can you clarify this part for me?
thanks,
Maro
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Hi Maro:
Very deep and complicated question, but since you asked, I will try and give you my opinion. I do not know if its better to go hard and get a CR (say after 3 or 4 rounds) as compared with going soft and reaching the same level after 8 or 9 rounds.
In my wife's case, she has one of the chromosomal abnormalities (CA), the t(4,14) condition. That is now called intermediate risk, and not too many years ago was called high risk. I think that, in standard risk, the slower approach probably does not have as big as a downside. In the intermediate- and higher-risk settings, looking at the numbers over a number of studies, I think there is a downside to the slower approach.
I do not recall if you posted the FISH test (or equivalent results). If your mother is standard risk, and she is almost at VGPR at present, I think the approach could be reasonable. If you do not use a particular drug or class of drug, and a patient becomes refractory (say in your mother's case to Revimid), then the other drugs are in "your back pocket" for down the line. That is another potential advantage for the doublet.
I think the studies have shown and are showing that for the "average" patient", a good induction and initial response is good for the long term, and that more intense induction with better drugs leads to better response, better progression-free survival, and better overall survival. No patient, however, is exactly the "average". You could be above the curve, but for each one who is, there is another that is below the curve.
The thing is, if you go for the heaviest possible induction, there is no way of knowing for sure if you are overmedicating. Some people who are taking drugs, and experiencing the side effects, and its probably not helping them. No way to know for sure.
I recall as a child my parents would take me to the doctor in the "Medical Arts" building. Medicine, in addition to being a science, is also an art. Art entails styles and different modes of visualization, etc. So I do think that a very artful doctor can finesse the treatments, and dial up and dial down the treatments based on clinical experience. In our case, however, we have bought into trying to get to CR / MRD-, and we are doing a consolidation at present, because we did not get there with 5 rounds of RVD and ASCT.
Good luck to you and your Mom.
Very deep and complicated question, but since you asked, I will try and give you my opinion. I do not know if its better to go hard and get a CR (say after 3 or 4 rounds) as compared with going soft and reaching the same level after 8 or 9 rounds.
In my wife's case, she has one of the chromosomal abnormalities (CA), the t(4,14) condition. That is now called intermediate risk, and not too many years ago was called high risk. I think that, in standard risk, the slower approach probably does not have as big as a downside. In the intermediate- and higher-risk settings, looking at the numbers over a number of studies, I think there is a downside to the slower approach.
I do not recall if you posted the FISH test (or equivalent results). If your mother is standard risk, and she is almost at VGPR at present, I think the approach could be reasonable. If you do not use a particular drug or class of drug, and a patient becomes refractory (say in your mother's case to Revimid), then the other drugs are in "your back pocket" for down the line. That is another potential advantage for the doublet.
I think the studies have shown and are showing that for the "average" patient", a good induction and initial response is good for the long term, and that more intense induction with better drugs leads to better response, better progression-free survival, and better overall survival. No patient, however, is exactly the "average". You could be above the curve, but for each one who is, there is another that is below the curve.
The thing is, if you go for the heaviest possible induction, there is no way of knowing for sure if you are overmedicating. Some people who are taking drugs, and experiencing the side effects, and its probably not helping them. No way to know for sure.
I recall as a child my parents would take me to the doctor in the "Medical Arts" building. Medicine, in addition to being a science, is also an art. Art entails styles and different modes of visualization, etc. So I do think that a very artful doctor can finesse the treatments, and dial up and dial down the treatments based on clinical experience. In our case, however, we have bought into trying to get to CR / MRD-, and we are doing a consolidation at present, because we did not get there with 5 rounds of RVD and ASCT.
Good luck to you and your Mom.
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Hi Maro:
I have responded very well with Revlimid plus dex. My M-spike is down from 3.9 to 0.7 g/dL after eight cycles.
Today my blood test came after the tenth cycle and for the first time I see all my blood profile is in normal range. My physician has recommended to finish twelve and then I will have detailed blood test to see if I am VGPR stable or have reached CR.
I had my stem cell harvested for freezing after five cycles. I am not inclined to have an autologous stem cell transplant.
I have tolerable side effects with Revlimid plus dex.
Thank you Maro
I have responded very well with Revlimid plus dex. My M-spike is down from 3.9 to 0.7 g/dL after eight cycles.
Today my blood test came after the tenth cycle and for the first time I see all my blood profile is in normal range. My physician has recommended to finish twelve and then I will have detailed blood test to see if I am VGPR stable or have reached CR.
I had my stem cell harvested for freezing after five cycles. I am not inclined to have an autologous stem cell transplant.
I have tolerable side effects with Revlimid plus dex.
Thank you Maro
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Is this a good response to Revlimid and dexamethasone?
Thanks for all these replies.
I am confused about one thing. What happens next? Does one remain on Revlimid + dex non stop? Is there a point when one can stop taking treatment and enjoy life drugs-free?
My mother is down lately. I keep trying to project into the future and hope that one day she can cut the treatment and enjoy life before a future relapse. Is that how it goes?
I am confused about one thing. What happens next? Does one remain on Revlimid + dex non stop? Is there a point when one can stop taking treatment and enjoy life drugs-free?
My mother is down lately. I keep trying to project into the future and hope that one day she can cut the treatment and enjoy life before a future relapse. Is that how it goes?
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Is this a good response to Revlimid and dexamethasone?
Hi Maro,
Unfortunately, currently there is no 'cure' for multiple myeloma. Usually, there is a 'drug free' 2 or 3 year window after an autologous stem cell transplant and an inevitable relapse and life long maintenance thereafter. Potentially a successful allogeneic (donor) transplant MAY give a patient a true 'cure' by replacing all the myeloma-prone bone marrow, but I have not come across any specific account of that.
Let's hope for a 'miracle' drug that can wipe out each and every monoclonal plasma cell and also help the body prevent any new monoclonal activity.
As I understand it, the maintenance therapy keeps things 'in check'. The side effects of the maintenance chemo and the potential loss of its effectiveness are the long term concerns. Your Mom's oncologist may be able to adjust the dosages for the balance between their effectiveness and your Mom's tolerance. My oncologist has prescribed only Revlimid for my maintenance to avoid the long term side effects of dex.
There is an encouraging thread (I could not find it ) about the myeloma patients doing well for a very long time (a few over 20 years) on maintenance and with the newer drugs we can hope for even better results.
K_Shash
Unfortunately, currently there is no 'cure' for multiple myeloma. Usually, there is a 'drug free' 2 or 3 year window after an autologous stem cell transplant and an inevitable relapse and life long maintenance thereafter. Potentially a successful allogeneic (donor) transplant MAY give a patient a true 'cure' by replacing all the myeloma-prone bone marrow, but I have not come across any specific account of that.
Let's hope for a 'miracle' drug that can wipe out each and every monoclonal plasma cell and also help the body prevent any new monoclonal activity.
As I understand it, the maintenance therapy keeps things 'in check'. The side effects of the maintenance chemo and the potential loss of its effectiveness are the long term concerns. Your Mom's oncologist may be able to adjust the dosages for the balance between their effectiveness and your Mom's tolerance. My oncologist has prescribed only Revlimid for my maintenance to avoid the long term side effects of dex.
There is an encouraging thread (I could not find it ) about the myeloma patients doing well for a very long time (a few over 20 years) on maintenance and with the newer drugs we can hope for even better results.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Is this a good response to Revlimid and dexamethasone?
Hi Maro, Isn't your mother on a clinical trial? When that ends, she might be recommended to some other treatments too, that are more tolerable for her.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Is this a good response to Revlimid and dexamethasone?
Yes. I am aware that there is no remedy for myeloma. But isn't there a point where everyone stops treatment for a while until a possible relapse?
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
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