1. < Blood Cancers & Disorders

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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Mentor
Patty, Volunteer Mentor | @pmm | Feb 2, 2023
In reply to @ladyesheryl "Just got diagnosed with MGUS. Found it doing blood work for liver biopsy since I have..." + (show)
@ladyesheryl

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.

Jump to this post

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

REPLY
mascot | @mascot | Feb 1, 2023
In reply to @myboyzr2 "I'm glad I found this forum. I was diagnosed with MGUS. Light chains are very high...." + (show)
@myboyzr2

I'm glad I found this forum. I was diagnosed with MGUS. Light chains are very high. Waiting on a 24 urine as they found light chains in my urinalysis.
I've seen a hema/onco. 3 month follow up. I was diagnosed with pulmonary embolisms in August.
I feel like a sitting duck waiting.

Jump to this post

All the very best for you edna68

REPLY
gina5009 | @gina5009 | Feb 1, 2023
In reply to @edna68 "Thank you for the hug. I believe my treatment will be with bortezomib, cyclophosphamide, and dexamethasone,..." + (show)
@edna68

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.

Jump to this post

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.

REPLY
ladyesheryl | @ladyesheryl | Feb 1, 2023
In reply to @loribmt "Hi, @myboyzr2, Welcome to Mayo Clinic Connect! I’m glad you found this forum too. It really..." + (show)
@loribmt

Hi, @myboyzr2, Welcome to Mayo Clinic Connect! I’m glad you found this forum too. It really helps to meet others who are traveling along the same road. There are several discussion related to MGUS~Monoclonal gammopathy of undetermined significance.

(MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood.
For most people it doesn’t pose a problem but it can progress into more serious diseases. We have quite a few members in our forum who have also been diagnosed with MGUS. I’m posting links to discussions on MGUS below, along with Mayo Clinic’s webpage on MGUS.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
~~~~

– Does anyone else have MGUS? https://connect.mayoclinic.org/discussion/mgus-diagnosis/
~~~
– MGUS: Please, let me know I not alone https://connect.mayoclinic.org/discussion/mgus-2d464e/

– MGUS diet: Any tips on food to enjoy or prevent progression? https://connect.mayoclinic.org/discussion/mgus-bgus-diet/

I’d like to introduce you to @pmm, @momsys,@mommatracy5, and @dazlin who were diagnosed with MUGA. These would be great people to Connect with for support. ☺️

I know waiting for labs is so stressful. Wishing you some good news on yours! Are you currently on any treatment for your MGUS?

Jump to this post

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.

REPLY
1 reply
2012can | @2012can | Jan 31, 2023
In reply to @edna68 "At Renown in Reno, NV." + (show)
@edna68

At Renown in Reno, NV.

Jump to this post

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.

REPLY
edna68 | @edna68 | Jan 31, 2023
In reply to @myboyzr2 "I'm glad I found this forum. I was diagnosed with MGUS. Light chains are very high...." + (show)
@myboyzr2

I'm glad I found this forum. I was diagnosed with MGUS. Light chains are very high. Waiting on a 24 urine as they found light chains in my urinalysis.
I've seen a hema/onco. 3 month follow up. I was diagnosed with pulmonary embolisms in August.
I feel like a sitting duck waiting.

Jump to this post

At Renown in Reno, NV.

REPLY
1 reply
2012can | @2012can | Jan 31, 2023
In reply to @edna68 "Thank you for the hug. I believe my treatment will be with bortezomib, cyclophosphamide, and dexamethasone,..." + (show)
@edna68

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.

Jump to this post

Are you comfortable stating where you are getting your treatment?

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

REPLY
edna68 | @edna68 | Jan 31, 2023
In reply to @mascot "I wish you All the very best! Which infusion are you getting?" + (show)
@mascot

I wish you All the very best! Which infusion are you getting?

Jump to this post

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.

REPLY
2 replies
mascot | @mascot | Jan 31, 2023
In reply to @edna68 "I am 68 years old and diagnosed with kappa light chain deposition disease. My kidney function..." + (show)
@edna68

I am 68 years old and diagnosed with kappa light chain deposition disease. My kidney function declined and I lost 20 pounds within a few months. I have had both kidney and bone marrow biopsies. My treatment protocol will be similar to treatment for multiple myeloma. My first infusion is scheduled for mid February.

Jump to this post

I wish you All the very best! Which infusion are you getting?

REPLY
1 reply
edna68 | @edna68 | Jan 30, 2023
In reply to @myboyzr2 "I'm glad I found this forum. I was diagnosed with MGUS. Light chains are very high...." + (show)
@myboyzr2

I'm glad I found this forum. I was diagnosed with MGUS. Light chains are very high. Waiting on a 24 urine as they found light chains in my urinalysis.
I've seen a hema/onco. 3 month follow up. I was diagnosed with pulmonary embolisms in August.
I feel like a sitting duck waiting.

Jump to this post

I am 68 years old and diagnosed with kappa light chain deposition disease. My kidney function declined and I lost 20 pounds within a few months. I have had both kidney and bone marrow biopsies. My treatment protocol will be similar to treatment for multiple myeloma. My first infusion is scheduled for mid February.

REPLY
2 replies
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