I’m back. I am so confused about what is happening to my serum free light chains. I originally posted about a movement upward in my free light chains. Now it is heading down again, but my ratio is much different, as is my lambda.despite research, I’m more confused than ever.
Here are the results (free light chain levels and ratio; levels are mg/l).
Kappa Lambda Kappa / lambda
265 No data No data
121 3.8 31.84
134 3.6 27.22
114 3.2 35.63
93.8 8.1 11.58
I have a few more weekly sessions of CyBorD followed by a short break and an autologous stem cell transplant on October 24. Apparently, the transplant goes ahead anyway, but I’m trying to determine if I’m improving or perhaps I need to question the regimen.
Any help / clarification is appreciated.
Janice
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?
Others more expert than I might be contradict this, but I don't see anything bad about the latest numbers. Your kappa free light chain level continues its downward trend and your lambda has climbed back into what is likely the normal range. The ratio number is simply the kappa level divided by the lambda level; it's mainly helpful for understanding whether there's an imbalance between kappa and lambda levels that are both within the normal range, and for assessing whether kappa or lambda levels outside the normal range are due to myeloma-related issues.
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Foundry738 - Name: Biclonal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2016
- Age at diagnosis: 67
Re: Fluctuating free light chain levels: what is normal?
Thank you. I assumed that because I was free light chain kappa that lambda was not an issue.
Janice
Janice
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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?
And my latest free light chain kappa is up, again. Back to August at 113.
Janimcdo
Janimcdo
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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,
It's still OK, It's usually best to see at least two readings within a similar time frame to see if there are trends.
Also, as the numbers get smaller, they are more sensitive to changes.
My reading often fluctuates if I take the test on different days of the cycle on 21/35 period.
As long as the doctor is not concerned, these minor undulations should be interpreted as a stable disease.
Keep up the positive spirit!
It's still OK, It's usually best to see at least two readings within a similar time frame to see if there are trends.
Also, as the numbers get smaller, they are more sensitive to changes.
My reading often fluctuates if I take the test on different days of the cycle on 21/35 period.
As long as the doctor is not concerned, these minor undulations should be interpreted as a stable disease.
Keep up the positive spirit!
Re: Fluctuating free light chain levels: what is normal?
I'm just back from an appointment with my oncologist and I have encouraging info to share.
Ian - You're right. The uninvolved light chain really doesn't matter. My doc says he doesn't even worry about the ratio until it gets really out of whack (and I've had two instances of a ratio of 100!) and focuses only on the involved light chain. Mine is fluctuating with no clear upward trend. My M-spike and plasma cell percentage is stable, and there are no high risk mutations, so I'm still smoldering. Whew!
Here's the best news that I heard and want to share: Evidently, involved free light chains in the hundreds aren't necessarily worrisome either. I always thought mine were super high, but my doctor said that his patients often have free light chains in the tens of thousands. I'm not a doctor and am certainly not an expert, but I thought that this was so encouraging, I wanted to put it out there.
Thanks.
Ian - You're right. The uninvolved light chain really doesn't matter. My doc says he doesn't even worry about the ratio until it gets really out of whack (and I've had two instances of a ratio of 100!) and focuses only on the involved light chain. Mine is fluctuating with no clear upward trend. My M-spike and plasma cell percentage is stable, and there are no high risk mutations, so I'm still smoldering. Whew!
Here's the best news that I heard and want to share: Evidently, involved free light chains in the hundreds aren't necessarily worrisome either. I always thought mine were super high, but my doctor said that his patients often have free light chains in the tens of thousands. I'm not a doctor and am certainly not an expert, but I thought that this was so encouraging, I wanted to put it out there.
Thanks.
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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?
Wow. Thank you all for this info. My husband keeps telling me not to get hung up on the numbers, but it is hard not to. Again, thanks for the info and direction in this twisting road.
We are not alone are we.
Janice
We are not alone are we.
Janice
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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'm so glad you got good news from your doctor! But I have to admit, I'm now utterly confused. I thought free light chains in the thousands, much less the tens of thousands, is a very bad thing. My doctors threw me in the hospital in an attempt to save my kidneys when mine spiked to 6400. How is it possible that someone's kidneys can survive an onslaught of free light chains?
Again, great news!
Courtenay
Again, great news!
Courtenay
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