How high should my Kappa light chain continue to rise before I worry.?

Posted by tmcclint92 @tmcclint92, Apr 11, 2024

My Kappa light chains continue to rise each time I have my labs run. They are now 90. The ratio rises also. But everything else including my Ig numbers are good. How high is too high? I was diagnosed with MGUS in April 2021, 2 months later in June 2021, they said I had Smoldering Myeloma. Two months later in August they diagnosed me with Multiple Myeloma. They put me on RVD therapy for 2 months and things looked good. Then they told me I was back to MGUS. Is that possible? All along my Kappa light chains continue to rise a little everytime. I just don't feel they're getting the big picture and I don't feel like they're taking anything seriously. My 1st bone marrow biopsy in August 2021 showed 30% cancer cells. The second one in November 2022 showed 3%. I just had another one yesterday and while I was lying there, the NP made a remark to the technician helping her, "That's weird, it's dry." Not exactly what you want to hear. And I could feel her moving the needle up and down several times. After she was done she said everything was fine. Who knows? I won't get the results back for 2 weeks. One oncologist told me I was a cancer doctors worst nightmare because they didn't know what to do with me because some numbers are good yet others are not so they don't know how to treat me. Meanwhile I'm on no kind of maintenance drug. I haven't been on anything since October of 2021 after 2 months of chemo. Does anyone have any advice?

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Can anyone comment whether the serum FLC kappa to lambda ratio range is the same as the bone marrow FLC kappa to lambda ratio range? That is, roughly 0.26 - 1.65 if normal?

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@barbarian1 That is the purpose of a baseline biopsy, to show the initial health of your bone marrow cells. Normal kappa LC is around 3.3-19.4 mg/L and Lambda 5.7-26.3 mg/L. Normal range of kappa/lambda is 0.65 to 1.65, although if someone has reduced kidney function then the ratio may be higher. Biopsies can also be used to rule out diseases, which allows doctors to look for other causes. I had a biopsies last summer that ruled out amyloidosis, MGRS, and IgA nephropathy which gave me a lot of comfort because those come with a lot of risks. https://bloodcancer.org.uk/understanding-blood-cancer/mgus/what-is-mgus/

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@kayabbott thanks for the UK link. That’s one of the most understandable explanations I’ve read. ❤️

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Are you seeing a myeloma specialist? If not, get one even if you have drive a long way. My light chain ratio is 93 (I have light chain smoldering mm). My myeloma specialist told me not all light chains are the same: by way of example, mine are not damaging my kidneys so I don’t need treatment. You need to consult with a myeloma specialist about YOUR light chains.

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