How high should my Kappa light chain continue to rise before I worry.?
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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@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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1 Reaction@kayabbott but u stated ur kappa l chains were 90? Is that 9 mg/L?
@barbarian1 Kappa and Lambda light chain (LC) volumes are measured from blood samples as milligrams per liter. A Kappa LC of 90 would be 90 mg/L. My latest Kappa level is 378 and Lambda is 11, both in mg/L The ratio is 31.77, and I am still at MGUS and asymptomatic.
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1 Reaction@aczatx47131 I’m interested in your diet for managing neuropathy.
@psanchez88
Hi, psanchez,
Here is a website with lots of information about managing neuropathy, including nutrition.
https://www.foundationforpn.org/lifestyles/peripheral-neuropathy-nutrition/
Claire
@kayabbott
Sorry for the delay in my response…
My former hematologist suggested I begin a second line of treatment when my kappa level reached 200, even though I had no CRAB symptoms. This is called biochemical relapse. I did not start a second line of treatment then because I saw Dr Craig Hofmeister’s video about biochemical relapse on Healthtree. I have been in biochemical relapse for two years, still no CRAB symptoms. Dr. Craig Hofmeister is my myeloma specialist now.
I was diagnosed with myeloma when my kappa/lambda light chain ratio was over 100 consistently for several tests and with results from bone marrow biopsy and other tests.
Claire
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2 Reactions@aczatx47131 Glad that you don't have CRAB symptoms. MM is hard, waiting and wondering what will come next. My oncologist said I wouldn't have MM unless my kappa was in the thousands ( although I also think he doesn't like to deliver bad news). No CRAB symptoms either (stage 3b chronic kidney disease from norovirus two years ago). My kappa is 378 (it was 100 17 months ago but the curve has flattened a bit) and kappa/lambda is 32 (IgM is 55 [low normal]; IgA is 715). My BMB last summer had 16% deranged plasma cells and the 1q21 mutation (10% generally for SMM diagnosis). I hope you have a great new year and stay in relapse.