Hello MMFeb16,15.
It is so nice to see your post and updates after some time. Glad you are doing well and putting in long hours at work. I hope you find a solution for your business soon.
Your M-spike is quite stable but I really haven't read much about M-spikes because I have the kappa light chains multiple myeloma and I generally read up on that subject.
For what it's worth, your kappa-lambda ratio is still well below the 100 level mentioned as a myeloma defining event, one of the criteria for a diagnosis of active, rather than smoldering, multiple myeloma, in articles such as:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
I am in a similar situation. My kappa level and kappa-lambda ratio have started rising after almost a year of stable readings of kappa at 50+/- mg/L and my kappa-lambda ratio rising from below 1.9 to 2.15, though I have been on the 15 mg alternate day Revlimid only maintenance for a year and a half. My main side effect has been reduced stamina level and the Revlimid diarrhea. I have been carrying out most of my business activities, I continue to take regular walks, play some golf in good weather, and manage weekly business trips that involve driving for 2 hours each way.
I compared my overall blood test results over the past 2+ years and it seems that my kappa level and kappa-lambda ratio were stable and closer to normal at 40+/- mg/l and the kappa-lambda ratio around 1.6 when I was on a 20 mg alternate day Revlimid. My oncologist agreed to let me go back to that dosing. I just started the higher dose of Revlimid in the middle of this week. I hope to see some drop in my free light chain results over the next couple of months.
I have been researching about some guidelines for the inevitable increase in these readings. The main worry is, of course, any bone decay and fractures caused by the deeper lesions on any bones. I assume you are concerned about the same. I also wonder why many patients try different drugs when their myeloma markers start rising instead of repeating a few cycles of their original induction therapy. The new drugs have unexpected side effects and some involve long hospital visits.
I couldn't find any definitive advice or guidelines about non-transplant patients like us that have rising levels of kappa and kappa-lambda ratio. Therefore, I am trying to extrapolate the advice and guidelines for the diagnosis of active vs. smoldering myeloma, and also for the transplant recipients that may be 'relapsing'. The articles on relapse after a transplant mention the rapid rise in the M-spike and also kappa levels rising above 200 mg/L (20 mg/dL) usually accompanied by high kappa-lambda ratio (much higher than your current levels).
I am curious to know if you were able to tolerate the Revlimid with a weekly dexamethasone. My main problem with Revlimid was that I could not tolerate the 15 mg x 3 weeks on (never reached the one week off) as soon as the dex was stopped. I got a severe Revlimid rash on my legs. My oncologist didn't want me to use the dex at all and reduced my Revlimid dose and essentially said that I could 'live' with the higher kappa!
My oncologist often tells me not to worry too much and just 'stay the course'. However, it is very worrisome when I have any muscle or joint ache / pain or some lower back pain. Fortunately, the recent back pain went away a couple of weeks after I must have pulled a muscle while rearranging some heavy furniture. I tore up a part of my arm tendons while playing golf and had to make sure that there was no bone damage. I, too, have damaged my knees, and the old advice, 'bend your knees NOT your back while lifting any heavy loads', is hard to follow. The glucosamine helps but only to a certain extent. I completely understand your concerns and I hope your hematologist finds the right course for you with medication you can tolerate.
All the best, and I hope you keep posting about your test results and about any treatment you undergo. Also, good luck with solving your business-related problems, too.
Forums
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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: M-spike creeping up, not on maintenance therapy
Dear forum colleagues:
My April blood test result came and I visited my hematologist on April 28.
My 2017 and 2018 blood test reports are below:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
2017
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
Jun 20 13.80 7.79 2.19
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
Oct 23 11.3 6.10 1.85
Nov 22 16.5 8.0 2.10
Dec 16 15.9 7.6 2.10
2018
Feb 1 15.2 8.8 2.5
Feb 28 26.5 16.4 2.6
Mar 24 30.8 18.7 2.4
Apr 21 27.5 15.1 2.6
My kappa level and kappa-lambda ratio have gone down and my M-spike shows signs of being stable over the last six months.
Could my kappa level and kappa-lambda ratio have gone up because of my excessive knee inflammation, which has substantially subsided now?
My hematologist suggested to get PET/CT scan and stay the course through diet and whatever else I am practicing as long as these parameters are stable.
Any comments or suggestions from anyone will be highly appreciated.
My April blood test result came and I visited my hematologist on April 28.
My 2017 and 2018 blood test reports are below:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
2017
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
Jun 20 13.80 7.79 2.19
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
Oct 23 11.3 6.10 1.85
Nov 22 16.5 8.0 2.10
Dec 16 15.9 7.6 2.10
2018
Feb 1 15.2 8.8 2.5
Feb 28 26.5 16.4 2.6
Mar 24 30.8 18.7 2.4
Apr 21 27.5 15.1 2.6
My kappa level and kappa-lambda ratio have gone down and my M-spike shows signs of being stable over the last six months.
Could my kappa level and kappa-lambda ratio have gone up because of my excessive knee inflammation, which has substantially subsided now?
My hematologist suggested to get PET/CT scan and stay the course through diet and whatever else I am practicing as long as these parameters are stable.
Any comments or suggestions from anyone will be highly appreciated.
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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
Like K-Sash and MMFeb16,15, I never had a transplant. My initial treatment was Velcade, Revlimid, and dexamethasone (VRd) for six months followed by two years of just Revlimid for maintenance and then off and on Revlimid. My M-spike fluctuates from 200 to 800 mg/dl (0.2 to 0.8 g/dl, or 2 to 8 g/l); all other numbers remain in normal range. My oncologist describes my multiple myeloma as indolent.
I thought my Revlimid was keeping my numbers in line, but now I'm not so sure, as they fluctuate quite a bit even when I am not taking anything. I have absolutely no symptoms, except constant dry mouth, despite the multiple lytic lesions in my spine. My oncologist and I are not inclined to restart any treatment until my M-spike hits 1000 mg/dl (1 g/dL).
I think the only other way to decide to start treatment would be any activity shown on PET/CT scans. I'm a strong believer that a PET/CT scan is the best way to monitor my multiple myeloma. As far as I know, the only downside to PET/CT scans are the amount of exposure to radiation and the cost.
I thought my Revlimid was keeping my numbers in line, but now I'm not so sure, as they fluctuate quite a bit even when I am not taking anything. I have absolutely no symptoms, except constant dry mouth, despite the multiple lytic lesions in my spine. My oncologist and I are not inclined to restart any treatment until my M-spike hits 1000 mg/dl (1 g/dL).
I think the only other way to decide to start treatment would be any activity shown on PET/CT scans. I'm a strong believer that a PET/CT scan is the best way to monitor my multiple myeloma. As far as I know, the only downside to PET/CT scans are the amount of exposure to radiation and the cost.
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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
Dear Coachhoke,
Thank you for your comments. I am also hesitant to do a PET/CT scan often. I had three small lytic lesions which made my hematologist declare me with IgG kappa active multiple myeloma on February 16, 2015. In my last PET/CT scan, eighteen months ago, they are not detected. The last PET/CT scan was my third since 2015.
Thank you.
Thank you for your comments. I am also hesitant to do a PET/CT scan often. I had three small lytic lesions which made my hematologist declare me with IgG kappa active multiple myeloma on February 16, 2015. In my last PET/CT scan, eighteen months ago, they are not detected. The last PET/CT scan was my third since 2015.
Thank you.
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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
Dear multiple myeloma friends:
I add my May results for your comments and suggestions. I also had my whole body PET/CT scan which shows no activities.
My 2017 and 2018 blood test reports are below:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
2017
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
Jun 20 13.80 7.79 2.19
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
Oct 23 11.3 6.10 1.85
Nov 22 16.5 8.0 2.10
Dec 16 15.9 7.6 2.10
2018
Feb 1 15.2 8.8 2.5
Feb 28 26.5 16.4 2.6
Mar 24 30.8 18.7 2.4
Apr 21 27.5 15.1 2.6
May 16 26.3 17.3 2.6
I notice that my M-spike is stable since last seven months. My free light chain fluctuates, which I am personally correlating with my knee inflammation (autoimmune rheumatoid arthritis).
As I wrote earlier, my whole body PET/CT scan on May 18,2018 shows no activities.
Any comments will be highly appreciated.
I add my May results for your comments and suggestions. I also had my whole body PET/CT scan which shows no activities.
My 2017 and 2018 blood test reports are below:
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
2017
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
Jun 20 13.80 7.79 2.19
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Sep 22 15.8 5.93 1.56
Oct 23 11.3 6.10 1.85
Nov 22 16.5 8.0 2.10
Dec 16 15.9 7.6 2.10
2018
Feb 1 15.2 8.8 2.5
Feb 28 26.5 16.4 2.6
Mar 24 30.8 18.7 2.4
Apr 21 27.5 15.1 2.6
May 16 26.3 17.3 2.6
I notice that my M-spike is stable since last seven months. My free light chain fluctuates, which I am personally correlating with my knee inflammation (autoimmune rheumatoid arthritis).
As I wrote earlier, my whole body PET/CT scan on May 18,2018 shows no activities.
Any comments will be highly appreciated.
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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
Hello MMFeb16,15
Your test results are quite stable, I don't know much about the M-spike, though, but that is stable, too.
And as noted before, your kappa and kappa-lambda ratio are higher than the 'normal' range, but well below the "thresholds" mentioned in the myeloma-related guidelines for the treatment of the multiple myeloma "Relapse after an ASCT," or for the progression of smoldering myeloma. I assume that these criteria apply to patients like us (and coachhoke and others) that have undergone the induction therapy, achieved sCR or CR, and not had any transplant.
I think we just 'stay the course"! And I hope you have continued success with the stable results without any treatment.
Your test results are quite stable, I don't know much about the M-spike, though, but that is stable, too.
And as noted before, your kappa and kappa-lambda ratio are higher than the 'normal' range, but well below the "thresholds" mentioned in the myeloma-related guidelines for the treatment of the multiple myeloma "Relapse after an ASCT," or for the progression of smoldering myeloma. I assume that these criteria apply to patients like us (and coachhoke and others) that have undergone the induction therapy, achieved sCR or CR, and not had any transplant.
I think we just 'stay the course"! And I hope you have continued success with the stable results without any treatment.
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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: M-spike creeping up, not on maintenance therapy
Dear multiple myeloma olleagues:
I stopped posting my monthly report since last one year. And I am off any kind of medicine, vitamins, or food supplements since last two years.
I am on diet, avoiding any food an extreme G6PD deficient person and a cancer person needs to avoid.
I live a very healthy and normal life without any negative symptoms. My hematologist reduced my visit from monthly to once in a quarter.
My last three quarterly reports are as below:
Date Kappa FLC K/L M-Spike
(mg/dl) ratio (g/dl)
October 26, 2018 351 16.7 3.27
February 22, 2019 415 15.1 3.08
June 28, 2019 205 10.847 3.10
I am worried.
Thank you.
I stopped posting my monthly report since last one year. And I am off any kind of medicine, vitamins, or food supplements since last two years.
I am on diet, avoiding any food an extreme G6PD deficient person and a cancer person needs to avoid.
I live a very healthy and normal life without any negative symptoms. My hematologist reduced my visit from monthly to once in a quarter.
My last three quarterly reports are as below:
Date Kappa FLC K/L M-Spike
(mg/dl) ratio (g/dl)
October 26, 2018 351 16.7 3.27
February 22, 2019 415 15.1 3.08
June 28, 2019 205 10.847 3.10
I am worried.
Thank you.
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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
You seem to be doing well, based on the numbers. Good news!
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: M-spike creeping up, not on maintenance therapy
Hello MMFeb16,15,
Good to see your posts again. After a long time. I have been quite busy with a lot of family and business activities and finally getting to comment on your recent post.
The first thing I noticed is that the prior posts showed that your kappa was in the 30 (-) range in mg/dL, and this post shows the values have jumped by a whole order of magnitude (200-400 range). I assume that these numbers are in mg/L and that is why the K/L ratio is still in line with the 2018 numbers.
There is no huge change in your Kappa readings, your K and K/L are really stable (/ dropping) and you seem to be doing well, as noted by Arizonian. And all this without any active treatment! I think that is great. Of course, the M-spike is your likely worry, and I have no insight in that matter since I have light chain multiple myeloma with no measurable M-spike.
Good to see your posts again. After a long time. I have been quite busy with a lot of family and business activities and finally getting to comment on your recent post.
The first thing I noticed is that the prior posts showed that your kappa was in the 30 (-) range in mg/dL, and this post shows the values have jumped by a whole order of magnitude (200-400 range). I assume that these numbers are in mg/L and that is why the K/L ratio is still in line with the 2018 numbers.
There is no huge change in your Kappa readings, your K and K/L are really stable (/ dropping) and you seem to be doing well, as noted by Arizonian. And all this without any active treatment! I think that is great. Of course, the M-spike is your likely worry, and I have no insight in that matter since I have light chain multiple myeloma with no measurable M-spike.
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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: M-spike creeping up, not on maintenance therapy
Dear friends on the forum:
Thank you. Here is my new report:
Date Kappa FLC K/L M-Spike
(mg/dl) ratio (g/dl)
October 26, 2018 351 16.7 3.27
February 22, 2019 415 15.1 3.08
June 28, 2019 205 10.847 3.10
November 8, 2019 635 48.106 3.10
I'm not sure how much I need to worry about the fluctuating kappa free light chain level and kappa-lambda ratio. My M-spike is high but stable over a year.
I am on not currently on any treatment for my multiple myeloma r any kind of medicine or vitamins except Zometa along with my blood test.
Thank you. Here is my new report:
Date Kappa FLC K/L M-Spike
(mg/dl) ratio (g/dl)
October 26, 2018 351 16.7 3.27
February 22, 2019 415 15.1 3.08
June 28, 2019 205 10.847 3.10
November 8, 2019 635 48.106 3.10
I'm not sure how much I need to worry about the fluctuating kappa free light chain level and kappa-lambda ratio. My M-spike is high but stable over a year.
I am on not currently on any treatment for my multiple myeloma r any kind of medicine or vitamins except Zometa along with my blood test.
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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
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