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

Hi @lipstickonmycollar. Love the @name! But not liking that you’re feeling so ill on a daily basis.
Members in the forum can’t interpret results of medical tests, diagnose or offer treatment. But we can use our experience to help each other find answers.

Your blood numbers on the CBC are all in the normal range but your kidney GFR number is quite diminished. You’re seeing a nephrologist so I’m expecting they are aware of the decrease in function and it’s not the cause of your feeling so poorly…though it maybe collateral damage of whatever is causing your illness.

However, Kappa/Lambda light chain ratio is quite elevated. Kappa/Lambda free light chain serum test is a blood test that checks for high levels of certain proteins in your blood. Elevated free light chains might mean you have a plasma cell disorder. Along with the Immunoglobulin G also being higher than normal, this really warrants more action from your hematologist.
I don’t mean to alarm you but this can indicate a more serious transition from MGUS. You are right, MGUS doesn’t go away and can develop into other conditions such as Multiple Myeloma. If your hematologist is cavalier about these light chain results, saying ‘you’re fine’ when you are feeling so ill, it’s time to get another opinion.

What are your daily symptoms?

Hello everyone. I was diagnosed with MGUS a few years ago. After a while, MGUS no longer showed in my blood work. I had heard that it couldn't go away but it isn't showing currently. But I am still concerned about the way that I feel physically. I am sick daily. Very sick. And this is coming from a person who has had a few kidney surgeries and some other health issues. Also, I have seen real sickness when my mother died of cancer. I also watched my mother, and aunt, and a cousin die of cancer as well. So, if I say I'm sick, I don't mean the flu or a head cold.
I continue to see a hematologist. She always says that everything is fine. But something is not right. I have attached a copy of some of my last test results and I'm hoping that someone can make sense of it. I'm no looking to be sick. But I am looking to feel better and hopefully finding out the root cause of my illness. Oh yes, one more thing is that my parathyroid levels are off but according to my nephrologist something is triggering it. It's not the kind of thing that removing thyroids will fix. Help!

Welcome Sheryl, I think it’s safe to say that MGUS is usually diagnosed accidentally. As time goes on it gets put on the back burner if you have other health concerns because it is generally asymptomatic.
When I was diagnosed they were looking at a “lesion” on my C2, nodules on my thyroid and thickening of arteries. Yay! Turned out all of that was benign and nothing that requires treatment. “Lesion” related to arthritis, benign nodules and clogging of arteries minor.
So I’m lucky in that respect. I get bloodwork every three months and my oncologist/hematologist checks the results and compares them to the previous results. Watch and wait. I have learned not to worry about it.
By now you’ve probably read or heard from your physician that MGUS rarely progresses to smoldering or full-blown multiple myeloma. They will monitor you and in the event you do need treatment, there has been exciting progress (at least my HEM/ONC doc is excited) developing treatment. Try to keep this in mind and enjoy your life.
This forum is great for getting information. It is anecdotal but shared human experience makes me feel like others understand what I am experiencing.
Best wishes!
Patty

All the very best for you edna68

I wish you every good luck, but unfortunately, I am not the person who wrote to you. My e-mail address must have been misplaced.

Just got diagnosed with MGUS. Found it doing blood work for liver biopsy since I have just been diagnosed with cirrhosis which runs in my family. All of us non drinkers. I am 72.

Thanks so much for your response.

What is your free Kappa level if you don't mind sharing. Are your igA,igG, or igM elevated. When were you diagnosed with MGUS. Is there any hope your kidney situation will improve with treatment.

Best of luck with your treatment.

At Renown in Reno, NV.

Are you comfortable stating where you are getting your treatment?

I have free kappa MGUS and am concerned on organ deposition.

Thank you for the hug. I believe my treatment will be with bortezomib, cyclophosphamide, and dexamethasone, plus daratumumab. I will have a better understanding after my chemo education class this week.