MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio

@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?

I’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.

I 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.

Howdy, 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

Ouch! If you ever have another BMB, you can ask about light sedation.
Hugs!

I 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.

@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?

So glad I just found this page I always feel like I'm alone going through this MGUS ... my dr has told me much about it but results always say kappa light chains high and LAMBDA LIGHT CHAINS chains normal.. I dont see a ratio on mine ... I am now anemia and vitamin d and b 12 defficiency as well...Just always tired . I just had cancer removed from my face on tuesday may 21 2024.. and gallbladder last year in June .. I lost my Dad who I was so close to November 2021.. I just feel like i had no one to talk to about any of this. I hope someone can talk to me more on this MGUS ..I google but then that scares you more and dont really get any answers... well thanks to who reads this and sorry for rambling .. Have a blessed day ❤️

in reply to @leslie2121 At this point I am working on developing a better understanding of my labs, and HealthTree has some wonderful education videos that are done by real doctors talking about real things. Easy to understand information about light chains, lambda/kappa ratios etc. I figure if I go to my next appointment and have a better grasp of just what these tests are telling him, I may be able to have an intelligent discussion, as opposed to being the uniformed patient, sadly. I ended up submitting a form to Sutter, one of those "could use improvement" things and mentioned Nurse Ratchet, saying that while she is indeed very intelligent, I never know which of my messages gets forwarded to my doctor, or not. I intend to discuss this with him when I see him in a week or so. We all agree that medicine has changed so much, as I never thought I would be spending so much time trying to relearn chemistry and biology again. Doing so in college was difficult enough. LOL,

I forgot to mention , in my struggle with neuropathy prior to cancer diagnosis, I did many sessions of plasmapheresis, plasma exchange. The neurologist explained many of the bad actors are in the blood plasma. The treatment was of relief, though temporary.