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

Hi @emurrell65, I know how worrisome it is to potentially have a new health diagnosis. As you can see you’re not alone if the tests do show you have MGUS. I just wanted to make sure you saw this very recent comment from @susanh824 to @hels about her diagnosis with MGUS 10 years ago. It’s very encouraging to anyone diagnosed with MGUS. https://connect.mayoclinic.org/comment/830721/

I’m sure you’re counting the days until April 11. As a veteran/survivor of an aggressive blood cancer, my suggestion is to stay positive and find happy distractions. Read, watch movies, take walks, play with your favorite hobbies, go to lunch with friends, etc… indulge in moments of normalcy instead of focusing on “what ifs”. This will keep your spirits elevated and help you through the anxiety of waiting.
What are some of your favorite pastimes?

I was diagnosed with MGUS over ten years ago. I meet with a hematologist and oncologist once a year to follow up. I was told that most MGUS patients never develop multiple myeloma, and if they do, they usually are in their 70’s or 80’s. Please don’t be too alarmed by a MGUS diagnosis.

They want more blood test done and also urine and bone xray. The hemotologist wanted to know why my doctor even ordered the kappa light chain test and i explained that i have been having pain in my back and legs but also I work from home and sit all day and i haven arthritis so i contributed it to that so i will find out April 11 what they diagnoised

I am having my second test done also and an xray for bone imaging and also urine my doctor says i probably dont have it but may have MGUS still i am very worried!!

that sounds like a plan, I am always googling and my doctor says dont google but i just want answers like yesterday!!!

Hi got diagnosed with mgus last nov still getting my head around everything loads of things i didnt think to ask in consultation my next blood test is in june to check my levels havent changed so i will take a list with me of things i need to ask ...maybe do the same x

Welcome, @emurrell65. I can imagine you're nervous, not to mention confused when your doctor is not yet clear whether the light chains indicate a possible diagnosis of myeloma or monoclonal gammopathy of undetermined significance (MGUS). I've moved your post to this existing discussion:

- MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio https://connect.mayoclinic.org/discussion/mgus-and-quite-high-free-kappa-light-chain-and-kappa-lambda-ratio/

I did this so you can easily connect with others who are familiar with MGUS and myeloma. In addition to @frances007, fellow members like @raye @omemee @gina5009 @deborahjb @jart @pmm @myboyzr2 @anng53 @edna68 and many others can share their experiences with testing to get a diagnosis and what to expect.

@emurrell65, you mentioned you will be having more tests. What testing has been scheduled for you as a next step?

I too had a recent lab test which revealed an elevated light chain issue, and the test will be repeated next month. I understand your concern and would make sure you follow up with a hematologist, as I will be doing after I complete the second round of testing. One of my doctors has reassured me that the light chain results were rather low and probably not anything to worry about; however, since my father died of multiple myeloma I too am concerned as you are.

I am very nervous got diagnosed with light chain disease my doctor said that she does not think it is myleoma, however i am very nervous and anxious. I have to take more test to make sure My doctor thinks it could be Monoclonal Gammopathy unknow, is anyone familiar with this please

Welcome to this message board. I suspect you did like everybody else and consulted with Dr Google. Dr. google is such a pessimist.
My first and only recommendation because I’m not a physician or medical practitioner is to find yourself a really good oncologist/hematologist who can interpret your bloodwork for you. Like you, my Kappa free light chain is kind of off the hook with my Lambda within normal range. Your Hem/Onc doc will also look at the ratio as well. My ratio is also high. I was diagnosed with MGUS over a year ago. Like almost everybody else, my PCP was looking for something else when she found the M protein in my blood. It’s a little scary when they first start talking about multiple myeloma. But what I have learned since then, is that MGUS rarely progresses to smoldering or multiple myeloma and, in the unlikely event that it does, the treatment strategies are much improved, and it is certainly not a death sentence.
I get my blood drawn quarterly and then I see the doctor a couple of days later who can interpret the results for me. I do not fall into the trap of digging into my chart online, and trying to interpret them for myself. I mean, I have educated myself enough to look at the basics, but they also watch my kidneys my platelets, my white and red blood counts… I just want to look at the whole picture in relation to my overall health. It’s complicated. I’m a retired social worker, not a physician .
This watch and wait thing can be anxiety provoking, but I am reassured by the data, and I have learned to be patient and trust the process.
So do you live in a bigger city where you can connect to a hematologist/oncologist? I am fortunate that I can and there was availability for appointments with my current provider. I’m quite confident in his expertise and his handling of my MGUS. I do not recommend relying on your PCP to manage this for you. It is highly specialized stuff.
I’m glad you found this message board although I’m sorry for this worry for you. Please let us know how things go for you.

Wishing you the best… Patty.