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MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
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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Thanks. My M spike has been at the detection limit for a few years and hopefully stays there. MGUS is interesting to study, a complex topic. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7756706/
My PCP first detected an M Protein spike of .5 in Mar 2023. Since I have been monitored by my Oncologist, my M Protein spike increased to .7 in Dec 2023, then back down to .6 in Mar 2024. No issues were noted with a PET scan, bone marrow biopsy and a 24-hour urine.
As detailed below, my Free Kappa Light Chains is high, exceeds normal high end of 19.4 Mg/L, which in turn makes my Kappa/Lamba Ratio high compared to normal high of 1.65.
All other blood work results have been within normal range, no other issues except for an elevated FGFR3 auto antibody of 7,500, which exceeds 3,000 base, but unrelated to MGUS. A whole different issue of Small Fiber Neuropathy and an undetermined auto immune disease.
May 2023
Free Kappa Light Chains - 37.6 Mg/L
Free Lamba Light Chains - 14.2 Mg/L
Free Kappa/Lamba Ratio 2,65
December 2023
Free Kappa Light Chains - 40.9 Mg/L
Free Lamba Light Chains - 14.4 Mg/L
Free Kappa/Lamba Ratio 2.84
March 2024
Free Kappa Light Chains - 40.4 Mg/L
Free Lamba Light Chains - 15.5 Mg/L
Free Kappa/Lamba Ratio 2.61
How high does the Kappa Light Chain and ratio have to be to cause concern, I never quite understand the relation to the M-Protein spike or when individuals reference the M-Protein spike to Immunoglobulins IgG, IgA or IgM, all three of mine have been consistently within the middle of the normal range. MGUS is often an underlying cause of neuropathy, but my Oncologist does not believe it is in my case because my M-Protein spike is low. Any insight into my results would be appreciated.
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1 Reaction@amyboylan1
Lesions…I get annual CTs of my whole body. They show up as dark spots on the scan, they tell me. Fortunately I have not had one. That’s really how I was diagnosed in the first place. I had been in a car accident and was rear ended. I had neck pain and they scanned for damage. Fortunately, it turned out to be age related arthritis but they did discover that pesky Paraprotein.
@dstone501957
You ask a good question. How high is too high and when might you and your hem/onc doc decide that it’s time to treat? It took a couple of conversations with my provider before I got an answer to this question for myself. There are variables to consider such as co-existing conditions, overall health and I believe he really didn’t want me to think in absolute terms and obsess about it. Getting him to quit avoiding the question was like nailing Jello to the wall. He does have my number though. 🙂
My “numbers” are higher than yours and there are other members who have higher numbers than mine. The risk is low for progression to Smoldering Multiple Myeloma and even then, it may smolder away and still may not reach the threshold for treatment.
That, and each of us are unique.
It sounds like a discussion about this would be necessary with your hem/onc physician. Ask him or her what the threshold of concern would be for you. I felt much less anxious after I had this discussion. If you don’t have a scheduled appointment in the near future, you might ask for a phone call or a telehealth appointment (they like those because there is an established mechanism to get paid for their time).
Oh and neuropathy! I can check that box as well but they prefer to attribute it to diabetes. My A1C is 7 and well controlled by medication so I am skeptical but Etiology notwithstanding, aside from treating the symptoms, it’s something I just have to live with.
I have had 2 organ transplants the past 25 years and pheriferial neuropathy in both feet and ankles. I asked my Neurologist why the neuropathy, and they did more testing and found my kappa lightchain high, my lamda lightchain is normal and the M protein was zero.
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1 ReactionHi. Where do you get your Curcumin and may I ask what brand you use. I am newly diagnosed. Thanks!!!
Qunol, but there are other brands that carry bioavailable curcumin. Turmeric is good to add to foods as well, particularly food with fats, such as brownies, stews, and curries. Not much curcumin in turmeric but the spice has a nice earthy flavor and who knows if there might be other compounds in the root that are helpful
I have had MGUS and polyneuropathy for around 8 years, mostly minor loss of feeling and pain. My Kappa is 283 mg/L and Kappa/Lambda is about 20, M is at detection limit. The Kappa proteins can glom onto neurons and decrease their activity, thereby resulting in neuropathy (a lay person's explanation anyway). I use my hands a lot and the neuropathy hasn't progressed. Neuropathy can be caused by other things as well, diabetes being a primary one. I have celiac disease, which may also impact neuropathy. Here is some info: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7604635/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5573223/
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3 ReactionsThanks. I looked at Qunol but didn’t see bioavailable
Curcumin
Try searching using "bioavailable curcumin", "high absorption curcumin", any mix of "fast acting ultra...curcumin". mostly you don't want just regular curcumin because it alone is poorly absorbed. The stuff I use is " Extra Strength Turmeric Curcumin Complex Ultra High Absorption", which I think is marketing language overload. Bioavailable is more a medical term.