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

I was diagnosed with MGUS 8 years ago (I'm 69) and my kappa and kappa/lambda have slowly been ramping up; kappa is now 132 mg/L and kappa/lambda is 13. My hematologist says these plus other markers aren't high enough yet for a bone marrow biopsy. I do take 2000 mg/day of bioavailable curcumin (the active ingredient in turmeric, which is otherwise poorly absorbed); we'll see if that affects labs. No MGUS symptoms yet. I like to think of the plasma cells as being deranged, rather than precancerous. Here is one link for kappa MGUS: https://pubmed.ncbi.nlm.nih.gov/32772824/#:~:text=The%20reference%20standard%20to%20classify,and%20(3)%20monoclonal%20immunoglobulin.

@tmcclint92 Is your doctor a hematologist oncologist? If not, can you be referred to one? I see that the results you posted come from Indiana State University. Many of us will tell you to try to see a specialist who has experience with MGUS and multiple myeloma, rather than a general practitioner.

If the concensus is "you are an oncologist's nightmare" have you considered being seen at Mayo Clinic? I'd wager they won't say that! Here is the link to request an appointment at Mayo Clinic: http://mayocl.in/1mtmR63
What do you think, want to give that a try?
Ginger

Hematologists treated all kinds of blood cancers. They are generalists. A myeloma specialist treats SMM, MGUS and myeloma mostly.

There are websites to help you find a myeloma specialist. I watched videos on Healthtree.org and found a specialist to help me with biochemical relapse. I just called him up and made an appointment.

I have IgA kappa myeloma. Only 20% of myeloma patients are IgA kappa, about 6,000 people in US. The M-spike is not reliable for us. We need serum immunoglobulin to determine if the myeloma is progressing. My Austin hematologist did not know this. My Atlanta specialist did.

A myeloma specialist could help answer your questions.
https://healthtree.org/myeloma/community/directory
Here is a SmartPatients.com conversation with resources for Newly Diagnosed myeloma folks. You will have to register with SmartPatients.com to read the conversation.
https://www.smartpatients.com/conversations/resources-for-newly-diagnosed#top
My Austin hematologist said I needed a second line of treatment when my kappa numbers reached 200. However I have no CRAB symptoms so I am not starting second line yet. My Atlanta specialist knew about biochemical relapse. All of this is explained in videos at Healthtree.org University.

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.

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

Thanks for the information. My neuropathy is from celiac disease; it has been at the same level as when I went gluten free 15 years ago. Turmeric is very poorly absorbed by the GI tract; bioavailable turmeric/curcumin includes piperine and/or lipids to increase absorption. I take about 5 gm/day of curcumin (FDA doesn't regulate supplements so hard to tell how much). I haven't noticed any side effects from the dosage, although my blood pressure has dropped slightly and the slope of my kappa curve has flattened (maybe related or not). https://pubs.acs.org/doi/10.1021/acsomega.2c07326
https://www.hopkinsmedicine.org/health/wellness-and-prevention/turmeric-benefits https://www.sciencedirect.com/science/article/pii/S2161831322008353

Thanks for the information. I always eat turmeric with black pepper and olive oil.

I knew that turmeric makes a difference in my kappa levels when I had a horrific rash and stopped eating turmeric for 3 weeks because I did not know the cause for the rash. My kappa levels increased by 50. When I started eating turmeric again, my kappa levels dropped by 50.

My sister has celiac so I have avoided gluten for 20 years. I did not know that neuropathy was a consequence of celiac.

Turmeric has been proven to reduce inflammation, and I have noticed that my joints are not as achy.

I am convinced that food is related to my lab results. Recently my hemoglobin dropped to 11.3. I read about how to raise hemoglobin in respected scientific websites. I learned that hemoglobin is produced more easily when calcium and protein are eaten at the same time. So I started drinking 1 cup of calcium-fortified oat milk when I ate protein. My hemoglobin returned to the normal range—12.3–very shortly.