I am new to myeloma and have only completed 6 weeks of treatment with an interruption to put a nail and screws in my right femur.
My first kappa free light chain level reading was 251. One month later after only two weeks of treatment with cyclophosphamide, bortezomib (Velcade), and dexamethasone and monthly pamidronate (Aredia), the kappa level went down to 121. After another 4 weeks, I’ve gone back up to 134.
Is this fluctuation normal? It worries me.
Forums
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janimcdo - Name: Janice McDonald
- Who do you know with myeloma?: me,
- When were you/they diagnosed?: Yesterday, April 2018
- Age at diagnosis: 69
Re: Fluctuating free light chain levels: what is normal?
Hi Janice,
Assuming these are serum free light chain readings, what is the unit of measure for your kappa free light chain values? Also, what have your lambda free light chain, free light chain ratio and M-spike values been doing during this same period?
Assuming these are serum free light chain readings, what is the unit of measure for your kappa free light chain values? Also, what have your lambda free light chain, free light chain ratio and M-spike values been doing during this same period?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Fluctuating free light chain levels: what is normal?
Hi Multibilly.
So glad you answered. You seem to really know your stuff.
Free Light Chains
Light Chains Kappa Free High 134.0 3.3-19.4 mg/L
Light Chains Lambda Free Low 3.65 7-26.3 mg/L
Light Chains Kappa Free/Light Chains Lambda Free High 37.22 0.26-1.65 mg/L
My concern is that my treatment regimen isn't working if it has gone up.
Thanks for your help
So glad you answered. You seem to really know your stuff.
Free Light Chains
Light Chains Kappa Free High 134.0 3.3-19.4 mg/L
Light Chains Lambda Free Low 3.65 7-26.3 mg/L
Light Chains Kappa Free/Light Chains Lambda Free High 37.22 0.26-1.65 mg/L
My concern is that my treatment regimen isn't working if it has gone up.
Thanks for your help
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janimcdo - Name: Janice McDonald
- Who do you know with myeloma?: me,
- When were you/they diagnosed?: Yesterday, April 2018
- Age at diagnosis: 69
Re: Fluctuating free light chain levels: what is normal?
Janice,
For the benefit of others on the forum, it appears that Janice has light chain myeloma.
A change of 121mg/L to 134mg/L in your kappa free light chain number isn't dramatic and you may just be plateauing as opposed to becoming refractory to the treatment. Have you discussed your latest test results with your doctor and what his goals are for you prior to transplant?
For the benefit of others on the forum, it appears that Janice has light chain myeloma.
A change of 121mg/L to 134mg/L in your kappa free light chain number isn't dramatic and you may just be plateauing as opposed to becoming refractory to the treatment. Have you discussed your latest test results with your doctor and what his goals are for you prior to transplant?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Fluctuating free light chain levels: what is normal?
Hi Multibilly,
Thanks for this. Here we have instant access to blood test results, but not to oncologists, and the oncology nurse is on holiday. You have soothed my anxiety and I should have an answer from either of my 'professionals' soon. It is just a challenge when numbers don't match those mental goals.
Thanks again,
jmz
Thanks for this. Here we have instant access to blood test results, but not to oncologists, and the oncology nurse is on holiday. You have soothed my anxiety and I should have an answer from either of my 'professionals' soon. It is just a challenge when numbers don't match those mental goals.
Thanks again,
jmz
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janimcdo - Name: Janice McDonald
- Who do you know with myeloma?: me,
- When were you/they diagnosed?: Yesterday, April 2018
- Age at diagnosis: 69
Re: Fluctuating free light chain levels: what is normal?
I have a similar question. My kappa free light chains have been fluctuating quite a bit. My oncologist (a myeloma specialist) sees a disturbing "upward trend" where I see a bunch of scattered data. I'm smoldering, and he thinks it's probably time to begin treatment. I'm having another bone marrow biopsy next week. Can anyone help explain what it is that I'm not seeing that suggests an "upward trend" that I should be worried about?
Date Kappa Lambda Kappa/Lambda Ratio
Sep 2017 469.6 8.4 55.9
Nov 2017 612.2 6.1 100.69
Dec 2017 473.5 8.7 54.43
Jan 2018 538 8.0 67.25
Apr 2018 611 6.2 98.61
Jul 2018 489.2 7.1 68.9
Date Kappa Lambda Kappa/Lambda Ratio
Sep 2017 469.6 8.4 55.9
Nov 2017 612.2 6.1 100.69
Dec 2017 473.5 8.7 54.43
Jan 2018 538 8.0 67.25
Apr 2018 611 6.2 98.61
Jul 2018 489.2 7.1 68.9
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Defcon Dragon - Name: Defcon Dragon
- Who do you know with myeloma?: myself, smoldering
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 55
Re: Fluctuating free light chain levels: what is normal?
Hello Defcon,
If you average the kappa/lambda ratio, it is 74.3. That is 20 points higher than where you started a year ago.
Also, in my lab reports, the normal kappa/lambda ratio is from 0.26 - 1.65. A ratio would not depend on the units of measurement. On my labs, the normal kappa free chain value is from 3.3 - 19.4 mg/l and for the lambda free light chains from 5.71 - 26.3 mg/l. (These values are in the metric system; yours may also be but in different units, so it can be helpful to include the units in your post.)
So I hope that helps! I think that the doctors do sometimes average out values to look for trends.
If you average the kappa/lambda ratio, it is 74.3. That is 20 points higher than where you started a year ago.
Also, in my lab reports, the normal kappa/lambda ratio is from 0.26 - 1.65. A ratio would not depend on the units of measurement. On my labs, the normal kappa free chain value is from 3.3 - 19.4 mg/l and for the lambda free light chains from 5.71 - 26.3 mg/l. (These values are in the metric system; yours may also be but in different units, so it can be helpful to include the units in your post.)
So I hope that helps! I think that the doctors do sometimes average out values to look for trends.
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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: Fluctuating free light chain levels: what is normal?
Hi Nancy,
Thanks for the response. Your averaging the results makes some sense.
You're right that my numbers are high. Your reference ranges are correct and are in the same units we use. A "Myeloma Defining Event" is a kappa/lambda ratio over 100, which I have had had once (or twice if you include 98.6), but I was hoping that, since the numbers seem to fluctuate and settle back down, I could smolder much longer. I still seem to have no symptoms, so it's hard for me to justify starting treatment based on numbers alone. I feel great now and probably won't once treatment begins.
Thanks for the response. Your averaging the results makes some sense.
You're right that my numbers are high. Your reference ranges are correct and are in the same units we use. A "Myeloma Defining Event" is a kappa/lambda ratio over 100, which I have had had once (or twice if you include 98.6), but I was hoping that, since the numbers seem to fluctuate and settle back down, I could smolder much longer. I still seem to have no symptoms, so it's hard for me to justify starting treatment based on numbers alone. I feel great now and probably won't once treatment begins.
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Defcon Dragon - Name: Defcon Dragon
- Who do you know with myeloma?: myself, smoldering
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 55
Re: Fluctuating free light chain levels: what is normal?
Hi Defcon,
I think it helps a lot when looking at lab results to graph them and then look for trends. It is really hard to pick up trends just from tables of numbers.
I've posted below some graphs of your kappa, lambda, and kappa-lambda ratio levels. I've also included trend lines in the graphs, and the R2 of each trend line.
As you can see, there really is no significant trend in your ratio, and the reason it is bouncing around is mainly because your lambda free light chain result, which is your uninvolved light chain, is bouncing around. Your involved free light chain, kappa, is bouncing a little bit, but it hardly shows any trend at all.
So I think you and your doctors need to be cautious about drawing too many conclusions just from your free light chain results.
Cheers!
I think it helps a lot when looking at lab results to graph them and then look for trends. It is really hard to pick up trends just from tables of numbers.
I've posted below some graphs of your kappa, lambda, and kappa-lambda ratio levels. I've also included trend lines in the graphs, and the R2 of each trend line.
As you can see, there really is no significant trend in your ratio, and the reason it is bouncing around is mainly because your lambda free light chain result, which is your uninvolved light chain, is bouncing around. Your involved free light chain, kappa, is bouncing a little bit, but it hardly shows any trend at all.
So I think you and your doctors need to be cautious about drawing too many conclusions just from your free light chain results.
Cheers!
- Kappa.png (5.8 KiB) Viewed 4589 times
- Lambda.png (5.88 KiB) Viewed 4586 times
- Ratio.png (6.59 KiB) Viewed 4589 times
Re: Fluctuating free light chain levels: what is normal?
Ian,
Thanks so much for all your work!
Thanks so much for all your work!
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Defcon Dragon - Name: Defcon Dragon
- Who do you know with myeloma?: myself, smoldering
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 55
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