Initial diagnosis IgG kappa; bone marrow biopsy (BMB) showed 30% plasma cells; 0.9 g/dL (9 g/L) M-spike; cytogenic and FISH normal. Multiple lytic lesions in spine (none symptomatic).
Induction with Velcade and dex resulted in 0.4 g/dL M-spike and PET/CT scan revealed all lesions metabolically inactive consistent with disease remission.
Switched to just Revlimid for two years of maintenance. No transplant. M-spike hovered between 0.1 and 0.3 g/dL for those two years. All other bloodwork remained in normal range.
Began drug holiday 10 months ago and nothing changed until 3 months ago when M-spike started slow trend upward; now 0.8 g/dL.
New PET/CT scan confirms no metabolic activity. No CRAB features and no pain anywhere.
I feel perfectly healthy and other than the M-spike trending up I would not know I had multiple myeloma.
My question: Should I start back on the Revlimid before any CRAB signs or keep watching and waiting?
Thanks for you opinions,
Coach Hoke
Forums
Re: Should I start back on Revlimid maintenance therapy?
Hello Coach Hoke
If your PET/CT scan shows no active disease has your oncologist suggested the cause of the increase in your M -spike? Do you have free light chain (FLC) tests / ratios undertaken too? It could be you are in a MGUS type state. which would be PET negative compared to active multiple myeloma.
The question for you is, after 10 months of a drug holiday and only three months of increasing upwards M spike, would taking Revlimid again reduce it and slow down development of any progression? I do not think there is anyone that can answer this and it should be discussed with your treating clinician.
Good luck
Edna
If your PET/CT scan shows no active disease has your oncologist suggested the cause of the increase in your M -spike? Do you have free light chain (FLC) tests / ratios undertaken too? It could be you are in a MGUS type state. which would be PET negative compared to active multiple myeloma.
The question for you is, after 10 months of a drug holiday and only three months of increasing upwards M spike, would taking Revlimid again reduce it and slow down development of any progression? I do not think there is anyone that can answer this and it should be discussed with your treating clinician.
Good luck
Edna
Re: Should I start back on Revlimid maintenance therapy?
Thanks Edna,
My light chains and all other myeloma markers are within normal range (with the exception of the all important M-spike, which is slowly creeping higher).
I know most studies suggest staying on maintenance forever. I would like to have stronger evidence that it is time to restart treatment as I feel perfectly healthy for a seventy four year old.
My light chains and all other myeloma markers are within normal range (with the exception of the all important M-spike, which is slowly creeping higher).
I know most studies suggest staying on maintenance forever. I would like to have stronger evidence that it is time to restart treatment as I feel perfectly healthy for a seventy four year old.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Should I start back on Revlimid maintenance therapy?
Coachhoke-
When you talk with your oncologist about whether it might be time to restart treatment, ask him what he looks for when deciding it's time to restart. When my M-spike began to rise slowly, my oncologist gave me a benchmark that he would use to decide when it would be time to restart treatment. It took me 2 more years before my M-spike all of a sudden rose from 0.8 g/dl to 3.9 g/dl and I restarted treatment.
When I restarted treatment my oncologist also gave me an M-spike level that he wanted me to be below within the first month of treatment. If I hadn't had that response he would have added another drug. Not only did I go below that level, but I more than halved the level of M-spike in that month. I've always been somewhat of an overachiever. Now, he has set another benchmark for when he would add another drug to my regimen. I haven't reached 0 M-spike since restarting treatment, but I have been stable at my current level.
So, have a conversation with your oncologist as to what his plan is for you if your M-spike keeps rising. I know that it helps to relieve my stress about this disease if I have an idea of what may come next in my treatment and when.
Nancy in Phila
When you talk with your oncologist about whether it might be time to restart treatment, ask him what he looks for when deciding it's time to restart. When my M-spike began to rise slowly, my oncologist gave me a benchmark that he would use to decide when it would be time to restart treatment. It took me 2 more years before my M-spike all of a sudden rose from 0.8 g/dl to 3.9 g/dl and I restarted treatment.
When I restarted treatment my oncologist also gave me an M-spike level that he wanted me to be below within the first month of treatment. If I hadn't had that response he would have added another drug. Not only did I go below that level, but I more than halved the level of M-spike in that month. I've always been somewhat of an overachiever. Now, he has set another benchmark for when he would add another drug to my regimen. I haven't reached 0 M-spike since restarting treatment, but I have been stable at my current level.
So, have a conversation with your oncologist as to what his plan is for you if your M-spike keeps rising. I know that it helps to relieve my stress about this disease if I have an idea of what may come next in my treatment and when.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Should I start back on Revlimid maintenance therapy?
Thanks Nancy for your response.
My oncologist responded (when my M-spike was 0.25 g/dL) that we will be concerned for disease progression if the M-spike is greater than 0.5 or kappa serum free light chains is greater than 10 mg/dl. Upon relapse we will consider Revlimid or Kyprolis.
When my M-spike got to 0.8 g/dL, he stated that the multiple myeloma is overall stable, but doesn't see any reason to start treatment until "definitive tumor progression."
I didn't ask what he meant by "definitive tumor progression," but I assumed it meant on my PET/CT which showed no active lesions.
You are right; I need a benchmark (which I thought was M-spike greater than 0.5).
I need to communicate better with my oncologist because the benchmark seems to have changed.
Coach Hoke
My oncologist responded (when my M-spike was 0.25 g/dL) that we will be concerned for disease progression if the M-spike is greater than 0.5 or kappa serum free light chains is greater than 10 mg/dl. Upon relapse we will consider Revlimid or Kyprolis.
When my M-spike got to 0.8 g/dL, he stated that the multiple myeloma is overall stable, but doesn't see any reason to start treatment until "definitive tumor progression."
I didn't ask what he meant by "definitive tumor progression," but I assumed it meant on my PET/CT which showed no active lesions.
You are right; I need a benchmark (which I thought was M-spike greater than 0.5).
I need to communicate better with my oncologist because the benchmark seems to have changed.
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Should I start back on Revlimid maintenance therapy?
Coach Hoke
From my experience with my treating doctors in a highly experienced myeloma clinic about treatments etc. I have come to realise that this will depend on many things and can change in the light of actual ongoing experience with a patient.
Your oncologist might well have thought initially a doubling of your M spike number would lead to consideration of restarting treatment. But then he is also faced with a 'clear' PET/CT scan which does not support pushing forward with treatment even though your M Spike has inched upwards. From his point of view he has to balance the risk of your myeloma suddenly progressing even though it appears stable with very slowly rising M spike, with giving you effectively toxic treatment if the scans do not indicate active myeloma.
I would want to know from him, if it was me, why the discordance in PET/CT result with serum M spike rising, indicating activity, What to him does this suggest about your disease state. The answers might be the basis of making a decision as to whether to restart treatment
Edna
From my experience with my treating doctors in a highly experienced myeloma clinic about treatments etc. I have come to realise that this will depend on many things and can change in the light of actual ongoing experience with a patient.
Your oncologist might well have thought initially a doubling of your M spike number would lead to consideration of restarting treatment. But then he is also faced with a 'clear' PET/CT scan which does not support pushing forward with treatment even though your M Spike has inched upwards. From his point of view he has to balance the risk of your myeloma suddenly progressing even though it appears stable with very slowly rising M spike, with giving you effectively toxic treatment if the scans do not indicate active myeloma.
I would want to know from him, if it was me, why the discordance in PET/CT result with serum M spike rising, indicating activity, What to him does this suggest about your disease state. The answers might be the basis of making a decision as to whether to restart treatment
Edna
Re: Should I start back on Revlimid maintenance therapy?
I got my answer yesterday. I'm NOT going back on maintenance. My M-spike for October dropped from 0.8 to 0.4 g/dL (8 to 4 g/L). From January 2015 till July it remained steady at 0.25 g/dL. Then it started to trend slightly upward:
July - 0.4 g/dL
August - 0.5 g/dL
September - 0.6 g/dL
October - 0.8 g/dL
Monday - dropped to 0.4 g/dL
I do not take any medication and was pleasantly surprised that my M-spike would drop without taking anything. Hooray, I'm still on a drug-free holiday.
July - 0.4 g/dL
August - 0.5 g/dL
September - 0.6 g/dL
October - 0.8 g/dL
Monday - dropped to 0.4 g/dL
I do not take any medication and was pleasantly surprised that my M-spike would drop without taking anything. Hooray, I'm still on a drug-free holiday.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Should I start back on Revlimid maintenance therapy?
Thanks for the update, Coach Hoke, and I'm glad to hear your M-spike went back down. I hope it stays down for a LONG time! 
Re: Should I start back on Revlimid maintenance therapy?
Indeed, great news , Coach.
Keep Going !
Good luck.
Keep Going !
Good luck.
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Rneb
15 posts
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