My August 22 blood test results came. I place it along with last four months result:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
Apr 24 4.90 1.70 0.34
After no Revlimid and dexamethasone.
May 28 - - 0.25
Jun 24 3.46 1.8 0.30
Jul 18 3.37 2.1 0.36
Aug 22 3.02 1.7 0.47
There was no light chain test in May.
I am not taking any chemo since April 24. My light chain is declining and coming towards normal but M spike is creeping up. How much should I worry? Should I go back on the Revlimid plus dexamethasone regimen, or a maintenance dose, or wait?
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: M-spike creeping up, not on maintenance therapy
MMFeb,
Technically, for you to be considered as having a serological relapse, your M-spike would need to move up by 25% (which it has) AND that movement would need to be >= 0.5 g/dL (which it is not since it has only moved 0.22 g/dL (0.47-0.25)).
Some doctors might argue that you should then consider whether you are also experiencing a symptomatic relapse (i.e. CRAB) before re-initiating treatment.
I'm not a doc, but I would say that starting maintenance would be something to consider and seriously discuss with your doctor at your September visit when you have your September lab results in hand. You might want to also discuss when your doc thinks you ought to be re-imaged since you initially presented with three small lytic lesions (i.e. don't assume your can't have continued osteolytic damage occurring when your blood and urine lab test results are normal, close to normal, and/or stable).
I wouldn't necessarily fret about all this, but I would carefully monitor the situation and also consider a second opinion about your next steps if your M-spike continues to progress. At least that's my two cents on the subject.
Technically, for you to be considered as having a serological relapse, your M-spike would need to move up by 25% (which it has) AND that movement would need to be >= 0.5 g/dL (which it is not since it has only moved 0.22 g/dL (0.47-0.25)).
Some doctors might argue that you should then consider whether you are also experiencing a symptomatic relapse (i.e. CRAB) before re-initiating treatment.
I'm not a doc, but I would say that starting maintenance would be something to consider and seriously discuss with your doctor at your September visit when you have your September lab results in hand. You might want to also discuss when your doc thinks you ought to be re-imaged since you initially presented with three small lytic lesions (i.e. don't assume your can't have continued osteolytic damage occurring when your blood and urine lab test results are normal, close to normal, and/or stable).
I wouldn't necessarily fret about all this, but I would carefully monitor the situation and also consider a second opinion about your next steps if your M-spike continues to progress. At least that's my two cents on the subject.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: M-spike creeping up, not on maintenance therapy
Multibilly - I'm curious. Can you explain your logic for feeling that MMFeb should probably go back on Revlimid and dexamethasone? I'm not sure I understand it.
As far as I can tell, MMFeb's M-spike was 0.34 g/dL right before he stopped treatment. His M-spike continued going down for a bit after he stopped treatment, then it popped back up to 0.47. At this point, there is no way of knowing if the M-spike is just bouncing around 0.34, or if the move to 0.47 g/dL is the start of a trend upwards.
What we do know is that MMFeb's involved free light chain has continued to go down and his kappa-lambda ratio has remained constant.
So why restart treatment with Revlimid and dexamethasone?
These days, there seems to be an assumption that, if someone has an M-spike, their disease is in the process of re-starting, or is close to being out of control. Yet patients who have never achieved a complete response can remain stable at a positive M-spike without necessarily relapsing.
As far as I can tell, MMFeb's M-spike was 0.34 g/dL right before he stopped treatment. His M-spike continued going down for a bit after he stopped treatment, then it popped back up to 0.47. At this point, there is no way of knowing if the M-spike is just bouncing around 0.34, or if the move to 0.47 g/dL is the start of a trend upwards.
What we do know is that MMFeb's involved free light chain has continued to go down and his kappa-lambda ratio has remained constant.
So why restart treatment with Revlimid and dexamethasone?
These days, there seems to be an assumption that, if someone has an M-spike, their disease is in the process of re-starting, or is close to being out of control. Yet patients who have never achieved a complete response can remain stable at a positive M-spike without necessarily relapsing.
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Jonah
Re: M-spike creeping up, not on maintenance therapy
I agree with Jonah for two reasons:
Good luck,
Coach Hoke
- Your numbers, although trending higher, have not even reached the definition of serological relapse.
- Numbers that low are not necessarily that accurate (although I agree the trend seems to be going the wrong way).
Good luck,
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: M-spike creeping up, not on maintenance therapy
Thanks for your comments, Coach.
However, I'm not really sure I see the purpose of additional imaging at this point – except, perhaps, if imaging hasn't been done for a while.
Since MMFeb has an M-spike, he has disease somewhere in his system. None of us here need a PET/CT scan to demonstrate whether there is myeloma in his body. It IS there, and it's producing a low level M-spike – not unlike the M-spike in someone with MGUS or smoldering myeloma.
So if a PET/CT scan comes up negative, it's only because it wasn't sensitive enough, or didn't scan the right places, because the disease is there.
However, I'm not really sure I see the purpose of additional imaging at this point – except, perhaps, if imaging hasn't been done for a while.
Since MMFeb has an M-spike, he has disease somewhere in his system. None of us here need a PET/CT scan to demonstrate whether there is myeloma in his body. It IS there, and it's producing a low level M-spike – not unlike the M-spike in someone with MGUS or smoldering myeloma.
So if a PET/CT scan comes up negative, it's only because it wasn't sensitive enough, or didn't scan the right places, because the disease is there.
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Jonah
Re: M-spike creeping up, not on maintenance therapy
Hi Jonah,
I hope you are doing well.
Please be clear that I said that "maintenance would be something to consider and seriously discuss with your doctor at your September visit when you have your SEPTEMBER lab results in hand". I also made it clear that that serological relapse has NOT been met at this point.
However, the M-spike has not "bounced" around in the past 4 months, but has rather consistently trended upward, albeit in small steps. And I closed by saying "I wouldn't necessarily fret about all this, but I would carefully monitor the situation and also consider a second opinion about your next steps if your M-spike CONTINUES to progress".
So, I'm simply suggesting that Rd maintenance be considered if the upward M-spike trend continues and one or more specialists agree that it makes sense. I apologize if that message did not come through clearly. Take care.
I hope you are doing well.
Please be clear that I said that "maintenance would be something to consider and seriously discuss with your doctor at your September visit when you have your SEPTEMBER lab results in hand". I also made it clear that that serological relapse has NOT been met at this point.
However, the M-spike has not "bounced" around in the past 4 months, but has rather consistently trended upward, albeit in small steps. And I closed by saying "I wouldn't necessarily fret about all this, but I would carefully monitor the situation and also consider a second opinion about your next steps if your M-spike CONTINUES to progress".
So, I'm simply suggesting that Rd maintenance be considered if the upward M-spike trend continues and one or more specialists agree that it makes sense. I apologize if that message did not come through clearly. Take care.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: M-spike creeping up, not on maintenance therapy
Hi MMFeb,
I think myeloma works in mysterious ways and each individual is different. Look at me: the doctor and I decided to stop low dose Revlimid and dexamethasone because of certain side effects. That was in August 2014, M-Spike down to 1.0 at that time;
Now two years later, M-spike 1.75 (but was also at 2.2 in between). Have been medication free since, but always took curcumin and other supplements and now for almost a year I am taking longvida curcumin.
My doc and I are not concerned BECAUSE I am feeling great. I was diagnosed in 2012 with IgG of over 7400 and a plasmacytoma needing a corpectomy (vertabrea 6 and 7 involved); then I was 67 years old. I am also the type who will always choose quality over quantity when it comes to living.
Maintenance: It's a decision you must make and be COMFORTABLE with and be flexible one way or the other. Kate
I think myeloma works in mysterious ways and each individual is different. Look at me: the doctor and I decided to stop low dose Revlimid and dexamethasone because of certain side effects. That was in August 2014, M-Spike down to 1.0 at that time;
Now two years later, M-spike 1.75 (but was also at 2.2 in between). Have been medication free since, but always took curcumin and other supplements and now for almost a year I am taking longvida curcumin. My doc and I are not concerned BECAUSE I am feeling great. I was diagnosed in 2012 with IgG of over 7400 and a plasmacytoma needing a corpectomy (vertabrea 6 and 7 involved); then I was 67 years old. I am also the type who will always choose quality over quantity when it comes to living.
Maintenance: It's a decision you must make and be COMFORTABLE with and be flexible one way or the other. Kate
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: M-spike creeping up, not on maintenance therapy
Hi Multibilly,
You're right. I made a mistake in saying MMFeb's M-spike had "bounced around". The M-spike went down the first month after he stopped his Revlimid-dexamethasone therapy, then has gone up for three months in a row. It hasn't really been "bouncing around" since he went off the Revlimid-dexamethasone treatment.
I guess I was focused on the fact that, right now, his M-spike only 0.13 g/dL higher than it was right before he stopped treatment with Revlimid and dex. I believe an M-spike change of 0.1 or 0.2 is not generally considered significant. Plus his other lab results either show equal, or better, disease control.
That's why I wondered why you seemed to be leaning toward restarting treatment. I realize you weren't adamantly in favor of it, but you seem to be leaning toward it in a situation where I thought you might, instead, say "I would wait for a few more M-spike results to determine if this is a clear trend."
That's all.
Thanks for your feedback, and thanks for all your other contributions here in the forum.
You're right. I made a mistake in saying MMFeb's M-spike had "bounced around". The M-spike went down the first month after he stopped his Revlimid-dexamethasone therapy, then has gone up for three months in a row. It hasn't really been "bouncing around" since he went off the Revlimid-dexamethasone treatment.
I guess I was focused on the fact that, right now, his M-spike only 0.13 g/dL higher than it was right before he stopped treatment with Revlimid and dex. I believe an M-spike change of 0.1 or 0.2 is not generally considered significant. Plus his other lab results either show equal, or better, disease control.
That's why I wondered why you seemed to be leaning toward restarting treatment. I realize you weren't adamantly in favor of it, but you seem to be leaning toward it in a situation where I thought you might, instead, say "I would wait for a few more M-spike results to determine if this is a clear trend."
That's all.
Thanks for your feedback, and thanks for all your other contributions here in the forum.
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Jonah
Re: M-spike creeping up, not on maintenance therapy
Everyone:
Thank you so much for your comments. I never expected comments from Multibilly and Jonah. I thought you will not find my request.
I respect comments from all three of you. My physician suggested PET/CT scan and I am expected to get it done in first half of September. Maintenance dose has been considered. I also notice my hematologist giving more weight to light chain figures.
My hemoglobin, RBC for the first time in last two months test are in normal range. My only symptom when I was diagnosed was three small lytic lesions as Multibilly has noted.
I am a G6PD person and never had my hemoglobin and RBC in normal range. It was always close to normal.
Thank you again for your suggestions. I will visit my hematologist on August 31st with all information and suggestions all of you provided.
Thank you so much for your comments. I never expected comments from Multibilly and Jonah. I thought you will not find my request.
I respect comments from all three of you. My physician suggested PET/CT scan and I am expected to get it done in first half of September. Maintenance dose has been considered. I also notice my hematologist giving more weight to light chain figures.
My hemoglobin, RBC for the first time in last two months test are in normal range. My only symptom when I was diagnosed was three small lytic lesions as Multibilly has noted.
I am a G6PD person and never had my hemoglobin and RBC in normal range. It was always close to normal.
Thank you again for your suggestions. I will visit my hematologist on August 31st with all information and suggestions all of you provided.
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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: M-spike creeping up, not on maintenance therapy
Hi Jonah,
Are you saying that if the PET/CT scan shows activity and the M-spike remains low, you wouldn't start treatment?
Thanks,
Coach Hoke
Are you saying that if the PET/CT scan shows activity and the M-spike remains low, you wouldn't start treatment?
Thanks,
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
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