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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Profile picture for barbarian1 @barbarian1

@kayabbott but aren't my Lt chain numbers low?

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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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Profile picture for kayabbott @kayabbott

@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 but u stated ur kappa l chains were 90? Is that 9 mg/L?

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Profile picture for barbarian1 @barbarian1

@kayabbott but u stated ur kappa l chains were 90? Is that 9 mg/L?

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@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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Profile picture for aczatx47131 @aczatx47131

Hello, kayabbott,

I hope my reply is helpful to you. Healthtree has wonderful videos with nationally recognized hematologists explaining details of myeloma. I have found these to be very helpful. In fact, that is how I found my myeloma specialist.

As I remember, I was diagnosed with myeloma in May 2019 when my kappa/lambda ratio was consistently over 100 for a number of weeks. My BMB showed around 15% of plasma cells.

In September 2019 I had a stem cell transplant which achieved a very good partial response. I was not in remission after the SCT. I have the 1q gain mutation.

I began Velcade every 14 days as maintenance therapy in November 2019. Slowly my kappa levels rose from the 30s in Nov 2019 to 200 in August 2023. When my kappa level reached 200 consistently, I was considered to be in biochemical relapse. Biochemical relapse means, as I understand it, that my kappa levels are above 200 but my hemoglobin, creatinine, and calcium are within normal limits and that I have no bone lesions. In other words, I have no CRAB symptoms, just high kappa levels.

On myeloma.org, there is an article that states that M-spike measurements are not reliable for IgA kappa myeloma because the little kappa molecule does not separate cleanly during SPEP. I have always had two M-spikes. So my myeloma specialist in Atlanta advises that I watch my kappa levels and the measurement of my IgA immunoglobulin to determine if my cancer is progressing.

Now my IgA fluctuates between 1200-1400. My two M-spikes vary from 0.7 to 0.9 and 0.2 to 0.3.

My kappa levels are around 215-230. So I am still in biochemical relapse because I have no CRAB symptoms. I am still in my first line of treatment, Velcade.

I think my kappas are stable because I sprinkle 1 teaspoon of the spice, turmeric, on my food four times a day. If I snack on popcorn, I sprinkle turmeric on my popcorn.

Every six months I get either a PET scan or an MRI, alternating them, to see if I have myeloma bone lesions.

Since the lines of treatments are not unlimited, I want to continue on Velcade as long as possible. I have neuropathy which I manage with diet, exercise, and shoes with adequate support.

Let me know if I may be helpful to you.

Claire

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@aczatx47131 I’m interested in your diet for managing neuropathy.

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Profile picture for psanchez88 @psanchez88

@aczatx47131 I’m interested in your diet for managing neuropathy.

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@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

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Profile picture for kayabbott @kayabbott

You were diagnosed with MM with a kappa level of 200? I have IgA kappa MGUS (9 years), and my hematologist told me it wouldn't be SMM until my kappa levels likely got into the 1000's (currently 378 and kappa/lambda is 32). My IgA is ~700, and my bone marrow biopsy last summer had 15% plasma cells; doctor said my other bloodwork and absence of any CRAB symptoms indicated still MGUS. As with you, minimal M spike. A BMB os 10% plasma cells is the general start for SMM, but the deranged plasma cells are not evenly distributed in the marrow, so my percentage may be less.

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@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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Profile picture for aczatx47131 @aczatx47131

@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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@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.

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