Hello everyone,
My mother has started off on Revlimid 25mg daily + 40 mg dex weekly. Each cycle is 3 weeks treatment and 1 week off.
Prior to treatment, her M-spike reached 48 g/L (4.8 g/dL) and light chains 104 mg/L.
She has just completed the first cycle and her M-spike has dropped to 15.4 g/L (1.54 g/dL) and light chains are down to 26.7 mg/L. Ratio is 0.08.
Are these result good? Do some patients normally respond better? Can we gradually reach a complete response (CR)?
All your thoughts would be much appreciated.
Maro
Forums
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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?
Hello Maro:
In American terms, it looks like after one round the M-spike dropped from 4.8 to 1.5. This I think is good (not a doctor's opinion). This is already PR (partial response) and a 67% reduction. Very good chance you would make to at least 90% reduction, which would be a very good PR (VGPR). The possibility of CR seems to be in the cards, but I think its not possible to predict with certainty after one round. This I think is good news, and I hope it continues. Good luck.
In American terms, it looks like after one round the M-spike dropped from 4.8 to 1.5. This I think is good (not a doctor's opinion). This is already PR (partial response) and a 67% reduction. Very good chance you would make to at least 90% reduction, which would be a very good PR (VGPR). The possibility of CR seems to be in the cards, but I think its not possible to predict with certainty after one round. This I think is good news, and I hope it continues. Good luck.
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Thank you JPC.
Would anyone else care to give some feedback or personal experiences on Rd?
Many thanks
Maro
Would anyone else care to give some feedback or personal experiences on Rd?
Many 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?
It is a very good response. It took me five cycles of Revlimid and dex to bring my M-spike down from 3.9 to 1.2. I am on my seventh cycle. After my sixth cycle, my M-spike was negligible. I am expected to have complete blood test after the seventh cycle. My hematologist expects me to reach a complete response after the seventh cycle.
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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?
Hello everyone.
Just got my mom's second cycle results. Her M-spike has dropped from 15.4 g/L to 13.5 g/L (1.54 g/dL to 1.35 g/dL).
I am worried about the drop slowing down tremendously. Initially it went from 48 to 15.4 in just one cycle.
Is it common that it suddenly slows down?
Thanks.
Just got my mom's second cycle results. Her M-spike has dropped from 15.4 g/L to 13.5 g/L (1.54 g/dL to 1.35 g/dL).
I am worried about the drop slowing down tremendously. Initially it went from 48 to 15.4 in just one cycle.
Is it common that it suddenly slows down?
Thanks.
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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?
Hello Maro:
In induction, the treatment usually gets to a plateau of best response. The complete response (CR) probability varies depending on the treatment, but is typically less than 25% based on initial induction chemo alone. From first to second round, the decrease was 0.2 for your mom, after a very nice decrease in the first round. For the next round, it usually is the case that the decrease would probably be smaller, and continuation with the same line for many more rounds would probably end up maybe in the 1.0 level, or thereabouts.
The fact that it would plateau is not unusual. Ideally, you would like to get it all gone, to CR, but with only RD, that would be somewhat unusual. A more realistic goal would be more than a 90% reduction, to under 0.5, which would be a very good partial response (VGPR). Above 50% but less than 90% is PR. So the response is not terrible, but it could be better, and that would be the basis of discussion with your doctor, as to what he (she) might change to get to at least to VGPR, and hopefully CR. Good luck
In induction, the treatment usually gets to a plateau of best response. The complete response (CR) probability varies depending on the treatment, but is typically less than 25% based on initial induction chemo alone. From first to second round, the decrease was 0.2 for your mom, after a very nice decrease in the first round. For the next round, it usually is the case that the decrease would probably be smaller, and continuation with the same line for many more rounds would probably end up maybe in the 1.0 level, or thereabouts.
The fact that it would plateau is not unusual. Ideally, you would like to get it all gone, to CR, but with only RD, that would be somewhat unusual. A more realistic goal would be more than a 90% reduction, to under 0.5, which would be a very good partial response (VGPR). Above 50% but less than 90% is PR. So the response is not terrible, but it could be better, and that would be the basis of discussion with your doctor, as to what he (she) might change to get to at least to VGPR, and hopefully CR. Good luck
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Thank you for the detailed response JPC.
The thing is we are in a clinical trial which is Revlimid and dex (Rd) versus Revlimid, dex, and Darzalex (daratumumab).
Unfortunately, we fell in the Revlimid-dexamethasone arm without Darzalex and that is for a total of 18 months.
So normally they are not planning to change treatment for my mother and at the last appointment the doctor said the result was heading in the right direction.
Do you think there is need to change treatment plan or give it more time with Rd? Is her result insufficient to suggest that she may go for a long time without progression?
I'm a bit lost and unsure what to do next..
The thing is we are in a clinical trial which is Revlimid and dex (Rd) versus Revlimid, dex, and Darzalex (daratumumab).
Unfortunately, we fell in the Revlimid-dexamethasone arm without Darzalex and that is for a total of 18 months.
So normally they are not planning to change treatment for my mother and at the last appointment the doctor said the result was heading in the right direction.
Do you think there is need to change treatment plan or give it more time with Rd? Is her result insufficient to suggest that she may go for a long time without progression?
I'm a bit lost and unsure what to do next..
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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?
Maro, My induction treatment consisted of Revlimid and dexamethasone, just like your mother's. (I am IgA kappa; t(4;14)). I did not have a high M-spike at the beginning of my treatment and Revlimid and dex worked very well for about seven months when I, as described above by others, "plateaued." While the SPEP indicated no M-spike, the IFE test continued to show the presence of some myeloma, however faint. At this point Velcade was added to the cocktail and I quickly reached a complete response. I am currently on Velcade maintenance and Zometa.
If your mother is participating in a trial and she is in the arm that only receives Revlimid and dex, there is no reason for her to remain in the trial if the Revlimid and dex regimen is not proving completely effective. Your specialist should be able to determine if she has actually "plateaued" and a change is in order. Your mother is not wed to the clinical trial; she can stop at any point. Perhaps this is something you already fully understand.
If your mother is participating in a trial and she is in the arm that only receives Revlimid and dex, there is no reason for her to remain in the trial if the Revlimid and dex regimen is not proving completely effective. Your specialist should be able to determine if she has actually "plateaued" and a change is in order. Your mother is not wed to the clinical trial; she can stop at any point. Perhaps this is something you already fully understand.
Re: Is this a good response to Revlimid and dexamethasone?
Hello, Maro:
Repeating again, and as you know, I am not a doctor. If there is a reduction from round to round, and your mother is tolerating it, I think there might be some more time that you could ride it out.
Personally, I would push your doctor to get some options. You are not forced to be on a clinical trial, if it no longer works for your particular situation. Over 50% of the patients do get a VGPR on the better 3 drug regimens, according to recent studies. Getting to a CR is somewhat more rare. I would dialog with the doctor as to what could be done to get to at least a VGPR. I would not hesitate to drop out of the study to add another drug (or change drugs) to get to that point. If you get the feeling that the doctor is more committed to the study than to your mother, I would see if it's possible to get a second opinion of another doctor who would be willing to do so.
I am not entirely up to speed on all the insurance and approval issues for you (I recall you are in France), and whether or not you mother might be considered "frail". Had your mother reached at least a VGPR, I would personally be a bit more satisfied. Since she did not I would be open to changes or to other options. Of course, that is not the only factor. If she is entirely without symptoms, and the Rd keeps her numbers very stable, that would argue the stay with it approach.
Best of luck and happy new year.
Repeating again, and as you know, I am not a doctor. If there is a reduction from round to round, and your mother is tolerating it, I think there might be some more time that you could ride it out.
Personally, I would push your doctor to get some options. You are not forced to be on a clinical trial, if it no longer works for your particular situation. Over 50% of the patients do get a VGPR on the better 3 drug regimens, according to recent studies. Getting to a CR is somewhat more rare. I would dialog with the doctor as to what could be done to get to at least a VGPR. I would not hesitate to drop out of the study to add another drug (or change drugs) to get to that point. If you get the feeling that the doctor is more committed to the study than to your mother, I would see if it's possible to get a second opinion of another doctor who would be willing to do so.
I am not entirely up to speed on all the insurance and approval issues for you (I recall you are in France), and whether or not you mother might be considered "frail". Had your mother reached at least a VGPR, I would personally be a bit more satisfied. Since she did not I would be open to changes or to other options. Of course, that is not the only factor. If she is entirely without symptoms, and the Rd keeps her numbers very stable, that would argue the stay with it approach.
Best of luck and happy new year.
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JPC - Name: JPC
Re: Is this a good response to Revlimid and dexamethasone?
Thanks for your replies.
@JPC - I am well aware that you are not a doctor. I mostly seek point of views and experiences from the community and your advice and experience is valuable to me. I thank you for sharing your point of view, as it gives me an indication to what I may expect or what I could speak of with our doctor.
Revlimid and dexamethasone (Rd) is tolerable for my mother. She does have fatigue and the common diarrhea, unfortunately, but I guess no treatment is without side effects.
Here is a little update on 3rd cycle results:
M-spike down to 10.2 g/L (1.02 g/dL) and light chains down to 14 in lambda and 8 in kappa, ratio 0.58.
Albumin 36.1 g/L.
We are approaching a VGPR and are currently at 80% reduction since the 48 g/L M-spike at start.
I think as you all advised it is best to give it a couple more cycles to see if we can achieve a VGPR or better.
Let me know your thoughts.
@JPC - I am well aware that you are not a doctor. I mostly seek point of views and experiences from the community and your advice and experience is valuable to me. I thank you for sharing your point of view, as it gives me an indication to what I may expect or what I could speak of with our doctor.
Revlimid and dexamethasone (Rd) is tolerable for my mother. She does have fatigue and the common diarrhea, unfortunately, but I guess no treatment is without side effects.
Here is a little update on 3rd cycle results:
M-spike down to 10.2 g/L (1.02 g/dL) and light chains down to 14 in lambda and 8 in kappa, ratio 0.58.
Albumin 36.1 g/L.
We are approaching a VGPR and are currently at 80% reduction since the 48 g/L M-spike at start.
I think as you all advised it is best to give it a couple more cycles to see if we can achieve a VGPR or better.
Let me know your thoughts.
Last edited by Maro on Wed Jan 06, 2016 7:45 am, edited 1 time in total.
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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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