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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@emurrell65

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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Greetings from Arkansas. I SO relate to the anxiety of getting fragmented information when they first discover blood abnormalities. I literally made myself sick worrying. Dr Google is not your friend. The more I read, the more panicked I got which is really not my jam! I’m used to being a calm voice in the storm, not the cyclone.
I have MGUS and was diagnosed almost two years ago now. We are watching but I try not to think about it as waiting. My MGUS may never progress. And I’m the unlikely event that it does, the treatment for Multiple Myeloma is much improved, according to my hematologist/oncologist.
I get bloodwork every three months. I get a CT scan annually that checks me head to toe for lesions. I live my life.
What worked for me was first finding a physician who is experienced in treating Multiple Myeloma. I wanted a specialist…hematologist/oncologist. Don’t let the oncologist part scare you. MGUS is not cancer.
Then you have to trust the process. Educate yourself about what they see in your blood that is giving them pause and how they will monitor your health. Do this by asking questions. Write them down. My initial appointment with my hem/onc doc was over an hour long. He was a trooper.
I never look at my lab results until I am sitting in the office with him. Others do it differently, but I think “My Chart” is the devil’s invention when it comes to this highly complex blood analysis. No good ever comes from heightened anxiety, especially when the source of your anxiety may be nothing to worry about.
Good luck! Glad you found our little community. Please update us as you travel this path. You are not alone.
Patty

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@pmm

Greetings from Arkansas. I SO relate to the anxiety of getting fragmented information when they first discover blood abnormalities. I literally made myself sick worrying. Dr Google is not your friend. The more I read, the more panicked I got which is really not my jam! I’m used to being a calm voice in the storm, not the cyclone.
I have MGUS and was diagnosed almost two years ago now. We are watching but I try not to think about it as waiting. My MGUS may never progress. And I’m the unlikely event that it does, the treatment for Multiple Myeloma is much improved, according to my hematologist/oncologist.
I get bloodwork every three months. I get a CT scan annually that checks me head to toe for lesions. I live my life.
What worked for me was first finding a physician who is experienced in treating Multiple Myeloma. I wanted a specialist…hematologist/oncologist. Don’t let the oncologist part scare you. MGUS is not cancer.
Then you have to trust the process. Educate yourself about what they see in your blood that is giving them pause and how they will monitor your health. Do this by asking questions. Write them down. My initial appointment with my hem/onc doc was over an hour long. He was a trooper.
I never look at my lab results until I am sitting in the office with him. Others do it differently, but I think “My Chart” is the devil’s invention when it comes to this highly complex blood analysis. No good ever comes from heightened anxiety, especially when the source of your anxiety may be nothing to worry about.
Good luck! Glad you found our little community. Please update us as you travel this path. You are not alone.
Patty

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Patty Thank you so much for that, You are truly on point with what you are saying.
I know i should not check my chart and yes it is an invention made just for anxiety!!!
I pray to my lord that he protects me from harm and i also know that what is for me will hit me and what is not will not, so i put my trust in my lord.
It is a long wait even though it is very short.
Thanks for your advice it will be well noted!!
Thanks Patty

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@tootsie10

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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Hi @tootsie10, I love your username! I hope you'll upload your beautiful picture to your profile.

How did your appointment go with your doctor last week? What did you learn?

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I have IgA lambda MGUS. Has anyone been able to find out anything about it? I see a hematologist at Northwestern Memorial in Chicago, and luckily I don't need any treatment, but the cloning level keeps rising every time I'm tested. The only thing I've seen about IgA is that it has a less positive prognosis than IgG. But that's it; nothing more about it. Anyway, I just want the cloning to stop. Does anyone else have this type of MGUS? If so, please let me know what's going with you. Thanks.

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@teedee66

I have IgA lambda MGUS. Has anyone been able to find out anything about it? I see a hematologist at Northwestern Memorial in Chicago, and luckily I don't need any treatment, but the cloning level keeps rising every time I'm tested. The only thing I've seen about IgA is that it has a less positive prognosis than IgG. But that's it; nothing more about it. Anyway, I just want the cloning to stop. Does anyone else have this type of MGUS? If so, please let me know what's going with you. Thanks.

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responding to @teedee66. It is my understanding that MGUS is a benign condition that means there is a higher than normal level of a protein M in your blood. At least this is what my doctor has explained to me, and that sometimes it can lead to more serious problems such as being more at risk for certain types of blood cancers. I recently had some IgG lab tests completed, all of which were flagged. Sadly, my doctor could not explain all of them and has referred me to a hematologist for further workup because I also have Lambda Kappa Light Chain disorders that also showed up in recent labs. Once I see the hematologist, I hope, like you, to have a more clear understanding, My doctor has suggested to me that there is a concern that I may have multiple myeloma, which was startling. However, I am not giving it much thought until I know for certain that I do in fact, have this condition that killed my father.
I hope you find what you are looking for.

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@teedee66

I have IgA lambda MGUS. Has anyone been able to find out anything about it? I see a hematologist at Northwestern Memorial in Chicago, and luckily I don't need any treatment, but the cloning level keeps rising every time I'm tested. The only thing I've seen about IgA is that it has a less positive prognosis than IgG. But that's it; nothing more about it. Anyway, I just want the cloning to stop. Does anyone else have this type of MGUS? If so, please let me know what's going with you. Thanks.

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Hi @teedee66, I moved your post about IgA lambda MGUS 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 read previous posts and connect more easily with members like @jart @pmm @gingerw @justnate @loribmt @packgb19 and many others.

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I didn't want to know much about my MGUS results although I was getting tested every 4 to 6 months for the first 2 years. (I guess life with the pandemic was enough for me!
Anyway, now I would like to understand my results that show:
1. IgG with Lambda Light Chain with Faint Bands"
2. High free Kappa Light Chain
3. High free Kappa Light Chain ratio
(Fortunately, the M Spike that I had appeared once last year is no longer appearing).
If anyone can explain these further or offer links to other references, I would be most appreciative. Thank you!

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@michey

I didn't want to know much about my MGUS results although I was getting tested every 4 to 6 months for the first 2 years. (I guess life with the pandemic was enough for me!
Anyway, now I would like to understand my results that show:
1. IgG with Lambda Light Chain with Faint Bands"
2. High free Kappa Light Chain
3. High free Kappa Light Chain ratio
(Fortunately, the M Spike that I had appeared once last year is no longer appearing).
If anyone can explain these further or offer links to other references, I would be most appreciative. Thank you!

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Hi @michey, learning the language of a diagnosis can be daunting. I moved your questions about IgG and light chains 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 read previous posts and connect easily with other member, like @pmm @gingerw @justnate @jart@ @packgb19 who asked similar questions and got answers about their blood results numbers as it applies to Lamba/Kappa light chains and ratios.

In the meantime, here's a good article that helps to explain light chains and their significance. - What Is Light Chain Myeloma? https://www.healthline.com/health/cancer/light-chain-myeloma

And 2 more articles about MGUS that you might find helpful
- Monoclonal gammopathy of undetermined significance (MGUS) https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
How Serious Is Monoclonal Gammopathy of Undetermined Significance (MGUS)? https://www.healthline.com/health/how-serious-is-mgus

Michey, Were there significant changes to your latest blood numbers?

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@lipstickonmycollar

Thank you so much for your response. I will seek a second opinion. I also forgot to mention that my nephrologist was very concerned. He even told me that he thought there was cancer somewhere and told me to talk to my oncologist and I did. The response was the same from my oncologist. It could be something totally different. But whatever it is, it needs to go. I'm miserable! I'll talk with my PCP and ask for a new referral. I feel encouraged now to advocate for myself.
Again, thank you!!!

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Hi @lipstickonmycollar I just wanted to followup with you. It’s been a couple of months since we last chatted. Any news with a second opinion?

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