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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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@catrena2024
I’m glad you found this page as well! I agree with you that it helps to hear the stories of other people with MGUS and I definitely find that Dr Google will scare you.
You’ve had a lot to deal with medically. Are you worried that it is all connected to the MGUS?
I was diagnosed with MGUS about three years ago. I have neuropathy in both feet and I have days when I am definitely low energy. Otherwise, I have been lucky so far. We have fellow travelers on this MGUS path who have had MGUS for many years and it has not progressed. Good news as well is that there are new treatment options that make progression less scary.
Are you receiving treatment in a cancer center? It sounds l Ike you are getting good support from your physician. Can you ask about the ratio?
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1 ReactionI have some kind of immune disorder as well they havent figured out what i been dealing with over a year as well ... I see a rheumatologist too...My cancer dr has told me there nothing to do for MGUS just said check it every 6 months and see if its turned into multiple myeloma thats it...I have neuropathy as well in feet in hands and all this being a hair stylist is hard . I been dealing with the MGUS over a year now and boy that bone barrow biopsy was no joke they numbed 3 times and I could still feel it .. I just wanted to get that over with lol ... and I'm gonna ask him about the ratio when I see him next Tuesday on my results . And thank you for replying.
Ouch! If you ever have another BMB, you can ask about light sedation.
Hugs!
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1 ReactionHowdy, I just happened upon this site. I was diagnosed with IGM MGUS back in 2012 and have been followed yearly for lab work. I go in for yearly labs in August and always get an uneasy feeling as this rolls around. Last year my IGM was (827 mg/dl high)and my Kappa light chains were (51.8 High). The Kappa Lambda ratio was also high at 3.65. My monocytes over the last 10+ years run a little high as do my Basophils. I had a bone marrow biopsy in 2012 when my light chains were normal. I ask every year if another bone marrow biopsy is warranted and get told no. I keep getting told treatments at this stage of the game are worse than just living with it. I feel like the numbers over the years tell me this is progressing, but the Hematologists/Oncologists don't seem to get excited. Watchful waiting is what I get told repeatedly, but that is hard to do sometimes. Any advice, Thank You. TK
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3 ReactionsI also have MGUS and am under the care of an oncologist who also isn’t worried about my low numbers.
Every 6 mos I get labs done, and a skeletal bone scan done to look for tumors, every year.
So far skeletal survey is negative, no tumors thank god!
I did have a bone marrow biopsy done 7-8 yrs ago by another oncologist where I was living then.
That was negative also.
I’m not really understanding these kappa light chains etc, but I leave it to the professionals to manage my tests.
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3 ReactionsI’m same as you.
I get checked every 6 mos and was told the same by my oncologist.
Just need to monitor labs every 6 mos.
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2 Reactions@tk121
Greetings! I’m glad you stumbled upon us. Welcome!
You might ask your hem/onc doc at what threshold would there be concern. I know exactly what you mean about pre-visit anxiety. I had labs and scans on Thursday as a matter of fact. Typically I am a bit anxious until after I see my hem/onc guy.
Early on, my numbers creeped up and I asked him about the threshold of concern. He took the time to explain his reasoning and I did a bit of reading on my own which reenforced his strategy. I am 72 but definitely NOT in the “hey you have to die of something” camp. I want to know that there is a plan that I can be on board with.
If your hem/onc doc is unwilling or unable to explain the plan to your satisfaction, you might ask for a second opinion. Can’t hurt.
I am convinced that anxiety contributes to my overall health negatively. I make it a point to avoid it whenever possible and to seek out useful information from my providers.
You can ask for a chat with your doc by phone, telehealth or in person before your next appointment if you are stressed. Does that make sense for your situation? Will you let me know how it goes if not earlier, in August?
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2 ReactionsThanks for your advice and I will definitely bring up those things at my visit. I forgot to add to my first post that I am 58 now and they found this IGM MGUS when I was 46. I was getting some tests done related to some wear and tear issues on my body. When some blood tests came back with a positive ANA Test, they started digging deeper. They did a full skeletal survey back when this was first found and the bone marrow biopsy, but only lab work since then. The skeletal survey was clear back then.
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2 Reactions@tk121
I get a skeletal survey every 6 months. One of the things that is watched in our “watch and wait” regimen is to be on guard for bone lesions.
I trust my medical team but I also advocate for myself pretty voraciously. Trust but verify.
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2 ReactionsHi. I was just diagnosed with MGUS and am having a lot of anxiety. Could you tell me what a high Kappa number and high Kappa Lamda ratio would be. I’m trying to figure out where mine fit in. Thanks a lot!!!