Thank you for the update and the good news. As long as it does not plateau, stay the course. And as you say, your mother is tolerating it. That is why they tend to go to two drugs for some of the older patients. Good luck!!
Sorry for repeating the doctor comment, however, maybe there is another reader, reading for the first or second time, who might need to get that concept.
Again, Good luck!! I hope you get to that VGPR or even better, even if it takes a while.
Forums
Re: Is this a good response to Revlimid and dexamethasone?
5th cycle update:
Hello everyone. Here is some news on how my mother is responding to Rd.
Her fifth cycle has just ended and the M-spike is down to 8.6 g/L (0.86 g/dL). Getting close to VGPR since the 48 g/L (4.8 g/dL) starting mark. Currently a reduction of 82%! Hope we make it!
Things are on the right track, although the drop seems to be slowing down. I remain positive since a drop is still a drop regardless, and if it keeps dropping, even slowly, we may perhaps get further than a VGPR.
Side effects remain essentially GI issues and she is managing to cope with them with some simple medication.
All thoughts are welcome and remain very helpful to my mother and I.
Wishing you all well,
Maro
Hello everyone. Here is some news on how my mother is responding to Rd.
Her fifth cycle has just ended and the M-spike is down to 8.6 g/L (0.86 g/dL). Getting close to VGPR since the 48 g/L (4.8 g/dL) starting mark. Currently a reduction of 82%! Hope we make it!
Things are on the right track, although the drop seems to be slowing down. I remain positive since a drop is still a drop regardless, and if it keeps dropping, even slowly, we may perhaps get further than a VGPR.
Side effects remain essentially GI issues and she is managing to cope with them with some simple medication.
All thoughts are welcome and remain very helpful to my mother and I.
Wishing you all well,
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,
Thanks for the update. Congratulations to your mother on her latest numbers and 82% M-spike reduction. Sounds like she is getting very close to VGPR territory.
As JPC said earlier in the thread, the % improvement from cycle to cycle does usually slow down and then reach asymptote as the number of cycles increases. However, it looks like your mother still may have some more cycles left before she plateaus.
It's very good to hear that she is managing the side effects well.
Best wishes to your mom. She is fortunate to have you riding shotgun with her. Please keep us posted on how things go.
Mike
Thanks for the update. Congratulations to your mother on her latest numbers and 82% M-spike reduction. Sounds like she is getting very close to VGPR territory.
As JPC said earlier in the thread, the % improvement from cycle to cycle does usually slow down and then reach asymptote as the number of cycles increases. However, it looks like your mother still may have some more cycles left before she plateaus.
It's very good to hear that she is managing the side effects well.
Best wishes to your mom. She is fortunate to have you riding shotgun with her. 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: Is this a good response to Revlimid and dexamethasone?
Thank you for your reassuring response Mike.
We are starting the 5th cycle now, will let you all know how it goes.
(Sorry, previous post was 4th cycle. I guess we get lost in all these cycles.)
We are starting the 5th cycle now, will let you all know how it goes.
(Sorry, previous post was 4th cycle. I guess we get lost in all these cycles.)
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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?
A question I wanted to ask: Is VGPR considered as good? I mean, in the long run does that mean a better and longer remission?
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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?
Good morning, Maro:
A couple of quick points. I recall that the three drug regimens (RVD and CyBorD) had something like a 65% to 70% rate of reaching VGPR or better on initial induction. I do not recall the Rd regimen, but I think its something like the 50% range. So reaching VGPR by your mother on a two drug regimen would be impressive.
Past studies have shown that VGPR vs the next level (partial response or PR) has a pretty noticeable improvement in progression free survival (PFS) and overall survival (OS). Likewise, CR would be better than VGPR, but only a minority of people reach that on the current standard of care. The actual number of 90% reduction, however, is somewhat arbitrary. Is 91% that much better than 89%, probably not, so you are almost at the point where year are in "earshot" of VGPR.
Then the next questions, would potentially be how to approach maintenance, etc. I do not recall whether or not your mother is considered transplant eligible. That of course would be something to think about. And at the appropriate time, how to potentially bring some of the newer meds into the mix, depending on the approval status in your country. Hope this helps.
A couple of quick points. I recall that the three drug regimens (RVD and CyBorD) had something like a 65% to 70% rate of reaching VGPR or better on initial induction. I do not recall the Rd regimen, but I think its something like the 50% range. So reaching VGPR by your mother on a two drug regimen would be impressive.
Past studies have shown that VGPR vs the next level (partial response or PR) has a pretty noticeable improvement in progression free survival (PFS) and overall survival (OS). Likewise, CR would be better than VGPR, but only a minority of people reach that on the current standard of care. The actual number of 90% reduction, however, is somewhat arbitrary. Is 91% that much better than 89%, probably not, so you are almost at the point where year are in "earshot" of VGPR.
Then the next questions, would potentially be how to approach maintenance, etc. I do not recall whether or not your mother is considered transplant eligible. That of course would be something to think about. And at the appropriate time, how to potentially bring some of the newer meds into the mix, depending on the approval status in your country. Hope this helps.
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
@JPC: As always, your replies are very helpful and on point. Thank you.
My mother declined to go through an autologous stem cell transplant (ASCT), although the doctors here suggested it. She is 65 years old. In France, ASCT is done until the age of 65 (vs 75 in the USA).
For the record, she is in a clinical trial of Revlimid and dexamethasone (Rd) vs Revlimid, dexamethasone, and Darzalex. Her current treatment is Rd only with no actual plan as to what will be done later on. The doctors say that as long as she keeps responding, they will keep her on this regimen and then lower the doses later. I think Revlimid may be taken on a very long term for her provided she keeps responding and that it keeps her away from progression of disease.
However, there is an endpoint, which is 18 months.
The French system seems to have a very different point of view that differs from what is done in the US. When I asked why we don't go for 3 medicine combos like in the USA, the doctor here said that in France they will prefer to try doublets first for the elderly and leave other therapies for later on. He explained that, had they included Velcade for instance, the response would probably / maybe have been a bit better. But how much better? Would it have been worth it? Is it not better to leave it for future use rather than immune your myeloma to it?
This logic seems to be pretty reasonable considering the way she is currently responding (maybe I would have seen things differently had she not responded well).
I am unsure if it is better to go strong from the start with a triplet, or if the French method with a doublet is more reasonable. Hard to tell I guess.
I would be curious to know your thoughts on this strategy.
Maro.
My mother declined to go through an autologous stem cell transplant (ASCT), although the doctors here suggested it. She is 65 years old. In France, ASCT is done until the age of 65 (vs 75 in the USA).
For the record, she is in a clinical trial of Revlimid and dexamethasone (Rd) vs Revlimid, dexamethasone, and Darzalex. Her current treatment is Rd only with no actual plan as to what will be done later on. The doctors say that as long as she keeps responding, they will keep her on this regimen and then lower the doses later. I think Revlimid may be taken on a very long term for her provided she keeps responding and that it keeps her away from progression of disease.
However, there is an endpoint, which is 18 months.
The French system seems to have a very different point of view that differs from what is done in the US. When I asked why we don't go for 3 medicine combos like in the USA, the doctor here said that in France they will prefer to try doublets first for the elderly and leave other therapies for later on. He explained that, had they included Velcade for instance, the response would probably / maybe have been a bit better. But how much better? Would it have been worth it? Is it not better to leave it for future use rather than immune your myeloma to it?
This logic seems to be pretty reasonable considering the way she is currently responding (maybe I would have seen things differently had she not responded well).
I am unsure if it is better to go strong from the start with a triplet, or if the French method with a doublet is more reasonable. Hard to tell I guess.
I would be curious to know your thoughts on this strategy.
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,
Thanks for the update. I think that your mother is doing very well on the RD clinical trial. Hopefully that will continue over the next few cycles also.
I 'only' had a two-drug induction of Velcade and dex, back in 2009. That worked well for me also. Since then, I did have the stem cell transplant and also Revlimid and dex, another two-drug combo. The Rev and dex also has been an effective treatment.
Your mother is fortunate to have a son who is so concerned about her also!
Thanks for the update. I think that your mother is doing very well on the RD clinical trial. Hopefully that will continue over the next few cycles also.
I 'only' had a two-drug induction of Velcade and dex, back in 2009. That worked well for me also. Since then, I did have the stem cell transplant and also Revlimid and dex, another two-drug combo. The Rev and dex also has been an effective treatment.
Your mother is fortunate to have a son who is so concerned about her also!
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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?
I am on Revlimid and dex. Blood work looks OK, but pain is so bad had to double pain medicine.
DT
DT
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Is this a good response to Revlimid and dexamethasone?
Maro wrote:
Hello Maro:
I think as you suggested, some of this is a judgement call, and on some of these calls, I think that I would defer to the doctors. In your mother's case, as you suggested, I am thinking that if this was a US doctor, they might prefer a triplet (and I know you have the issues of the clinical trial). In the US, too, however, I understand that judgements are made when it is deemed that a patient has age-related issues (frailty) that they dial down to other regimens, easier to take, that include lower-dose 3-drug regimens and 2-drug regimens.
I am also not certain to what degree other options, such as second opinions and different choices, are currently available in France. In my wife's case, we are very fortunate to have a good insurance coverage; that does provide us options and access. It sounds like you mother has frailty-related issues, and she also does not like the idea of going through an ASCT (and if that's her call, I respect that).
My only thought is to see how to bring back Empliciti (elotuzumab) and/or daratumumab into the mix, at the earliest opportunity (that may be first relapse, which I hope does not occur for a long time). Again, I don't think they are approved in France yet, but other jurisdictions are approving it, that may put some pressure on France to do so as well. The side effects reported so far for the Mab's are more of the short-term nature, and so far, at least, do not build up long-term issues.
The French system seems to have a very different point of view that differs from what is done in the US. When I asked why we don't go for 3 medicine combos like in the USA, the doctor here said that in France they will prefer to try doublets first for the elderly and leave other therapies for later on. He explained that, had they included Velcade for instance, the response would probably / maybe have been a bit better. But how much better? Would it have been worth it? Is it not better to leave it for future use rather than immune your myeloma to it?
Hello Maro:
I think as you suggested, some of this is a judgement call, and on some of these calls, I think that I would defer to the doctors. In your mother's case, as you suggested, I am thinking that if this was a US doctor, they might prefer a triplet (and I know you have the issues of the clinical trial). In the US, too, however, I understand that judgements are made when it is deemed that a patient has age-related issues (frailty) that they dial down to other regimens, easier to take, that include lower-dose 3-drug regimens and 2-drug regimens.
I am also not certain to what degree other options, such as second opinions and different choices, are currently available in France. In my wife's case, we are very fortunate to have a good insurance coverage; that does provide us options and access. It sounds like you mother has frailty-related issues, and she also does not like the idea of going through an ASCT (and if that's her call, I respect that).
My only thought is to see how to bring back Empliciti (elotuzumab) and/or daratumumab into the mix, at the earliest opportunity (that may be first relapse, which I hope does not occur for a long time). Again, I don't think they are approved in France yet, but other jurisdictions are approving it, that may put some pressure on France to do so as well. The side effects reported so far for the Mab's are more of the short-term nature, and so far, at least, do not build up long-term issues.
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JPC - Name: JPC
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