MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
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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I wish you All the very best! Which infusion are you getting?
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.
Are you comfortable stating where you are getting your treatment?
I have free kappa MGUS and am concerned on organ deposition.
At Renown in Reno, NV.
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.
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.
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.
All the very best for you edna68
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.
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!
Laboratory results (Laboratory-results.pdf)