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

Posted by jart @jart, May 15, 2022

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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@becky1024

I’ve been battling MGUS since May 2019 ever since I realized something was wrong with my bloodwork and asked my PCP to do specialized testing. That’s when my testing and troubles began. The wait and watch testing is standard for MGUS. The 24hr urine test is also an important tool in determining how things may be changing. The urine testing is done to check if you are passing the “M paraprotein”.

It looks for an M Spike, an indication that the paraprotein is progressing (not good) and you cells are headed towards a form of cancer, usually Multiple Myeloma or Lymphoma (mine indicates Lymphoma), my older brother’s was MM and died in 1999,. The number to be concerned about is 0.5 gd/L. Above that indicates your MGUS is progressing towards cancer of some kind. My last bloodwork shows my M/Spike was at 0.56 gd/L (not good). It means my bad guys are on the move and mutating. I pretty much figured that out because of all the new symptoms popping up all around my body.

Now for your Kappa, Lambda question. It’s one classification to tell what type of guys your body is making. IgD & IgE are very rare. In descending order in rarity IgG is the most common, IgA is next and then IgM, the rarest of the three and the one I have. In my last bloodwork, my IgM was listed 326 (definitely not good), which is way up past the high level scale.

Another classification is Kappa & Lambda free light chain and the ratio between them. My Kappa light chain is above normal at 48.49mg/dL. (definitely not good). My Lambda is at 19.10mg/dL, average level. My ratio is 2.56(again not good).

So as you can see, my bad guys are building up an army to do battle with my nonexistent immune system. The symptoms I described in another post are the results of my bad guys progressing into cancer, as it destroys my “B” cells, lymphocytes, platelets as it weakens me and devours my body for food and energy while robbing it from every part of my body. Good luck to you, you could be one of the lucky ones who’s MGUS never progresses into anything but scares the he!! out of you. It could start progressing but stop all of a sudden. Btw, I’m almost 79 and in very fragile condition because I was born with multiple rare health defects. Becky1024

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Becky I have a MGUS diagnosis and have been to a hemotologist to test for MM. My M(IgM is 349. I saw yours was at 326. I have IgM Kappa type. It's all new to me. I've been doing a lot of research but won't know until March 31st when I see the results from my doc what all this means.

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@loribmt

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?

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Well i love to read and cook and spend time with my grand children, thanks so much for your response i will focus on the positive things and keep my mind off of the negative
Thanks much

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@emurrell65

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!!

Jump to this post

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?

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@hels

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

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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.

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@colleenyoung

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?

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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

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@frances007

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.

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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!!

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@hels

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

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

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@emurrell65

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

Jump to this post

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

REPLY
@emurrell65

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

Jump to this post

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?

REPLY
@emurrell65

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

Jump to this post

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.

REPLY
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