MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio

Posted by jart @jart, May 15, 2022

The above was found in his blood serum test but follow-up 24 hr urine test showed only 2 free Kappas. Has anyone had experience with this? Does the urine test supersede the serum testing? Either way, is there anything to do other than “watchful waiting?”

BTW, he also has Dysautonomia (Diabetic T2).

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@anjill22

Hi so I was diagnosed with MGUS about 5 yrs ago and my kappa and lambda are always fluctuating they are both high but one higher then the other I have stage 3 kidney disease and fatty liver disease I also have coronary artery disease what are the signs when MGUS turns into mm I get blood work every 3 months and also my iron levels are up and down

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When either of your kappa or lambda serum reaches 100

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@sallik74

When either of your kappa or lambda serum reaches 100

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My IgA kappa MGUS was diagnosed when my kappa was less than 30 (normal is 3.30 - 19.40 mg/L), 8 years ago. It is now 329, and my deranged plasma levels are 15% based on my recent bone marrow biopsy. My MGUS is still MGUS based on looking at all my bloodwork, lack of lesions or other damage, and limitations of BMB (proteins are sticky and tend to clump, so plasma levels are likely less than 15%). That is why having an oncologist/hematologist is important, MGUS, SMM, and MM are like 4D puzzles with pieces missing.

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@sallik74

When either of your kappa or lambda serum reaches 100

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Ok what does that mean

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@anjill22

Ok what does that mean

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Both my kappa and my lambda are at 200 and the ratio between them both is 99 should something be done. My oncologist says we just monitor it

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So I was diagnosed with MGUS about 5 yrs ago and both my kappa and my lambda are at 2.00 and the ratio between them is 99 is this bad what does this mean

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@anjill22

So I was diagnosed with MGUS about 5 yrs ago and both my kappa and my lambda are at 2.00 and the ratio between them is 99 is this bad what does this mean

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@salik74 was not correct. My oncologist told me that my kappa levels would probably need to be in thousands before SMM or MM were diagnosed; technically, SMM and MM are more complicated than the numbers of one or two tests. I've had IgA kappa MGUS for 8 years and my kappa is now 329 and kappa/lambda almost 30 (my lambda is normal range, my kappa is not, so that affects the ratio). It would be good to pin down your oncologist and have him/her go over all your tests and explain what they mean. The chance of MGUS morphing to SMM or MM is 1%/year so doctors don't always realize how much the MGUS label can slap us around emotionally.

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@anjill22

Ok what does that mean

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My doctor is watching my Kappa Lambda serum which is
45. 7 & I am still SMM. He stated when or if it reaches 100 then I start
treatment.
These go up & down every 3 months with labs.
I would say you still don't need treatment

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@sallik74

My doctor is watching my Kappa Lambda serum which is
45. 7 & I am still SMM. He stated when or if it reaches 100 then I start
treatment.
These go up & down every 3 months with labs.
I would say you still don't need treatment

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Unless you are her oncologist, it isn't appropriate for you to say she "still don't need treatment". Every MGUS, SMM, MM case is different because it is a very complicated condition/cancer that has a lot of variables. That is good that you are still SMM and hopefully it never progresses, but your case is not hers.

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@kayabbott

Unless you are her oncologist, it isn't appropriate for you to say she "still don't need treatment". Every MGUS, SMM, MM case is different because it is a very complicated condition/cancer that has a lot of variables. That is good that you are still SMM and hopefully it never progresses, but your case is not hers.

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You are correct it is complicated & everyone is different.
There are many different tests to show where you are in this disease.
I appreciate you correction

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In reply to @rebeccaakabeck "Thanks" + (show)
@rebeccaakabeck

@rebeccaakabeck
Yes, I may have missed your response, but I caught that you are seeing a Physical therapist, but were you also referred to a hematologist/oncologist? Sorry if I missed your response.

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