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).

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

acmuceus | @acmuceus | Mar 29 2:16pm

I am about to start the drug Jakafi. Has anyone taken it and what were the side effects?

lililush123 | @lililush123 | Mar 27 2:09am

In reply to @edna68 "I am 68 years old and diagnosed with kappa light chain deposition disease. My kidney function..." + (show)

Hi dear, my brother was diagnosed with mgus two months ago and they found out that the protein is depositing in his heart and now they want to do treatment, could you tell me what treatment you did and how are you doing now? Thank you and god bless🙏🙏

Patty, Volunteer Mentor | @pmm | Feb 12 7:32pm

Rochester? I've been on that campus years ago with my late husband. I've not been on the other campuses.

rebeccaakabeck | @rebeccaakabeck | Feb 12 5:28pm

In reply to @pmm "@rebeccaakabeck How did your Mayo visit go?" + (show)

I'll be there all of next week
Thanks

Patty, Volunteer Mentor | @pmm | Feb 12 4:58pm

In reply to @anjill22 "Both my kappa and my lambda are at 200 and the ratio between them both is..." + (show)

@anjill22
greetings! I agree with @kayabbott in that none of us are prepared to interpret your lab results. Your best bet is to find a hematologist/oncologist in whom you can place your trust. Even if you and I have the same lab results, our overall health will be different because of coexisting conditions, age and physical stamina.
It seems that there is a lot of variation in treatment strategies among physicians as well. When I was looking for a oncologist who could guide me in my MGUS journey, I looked for someone who treats multiple myeloma and is very conversant with the spectrum between MGUS and full-blown multiple myeloma.
I urge you to write your questions down and take them with you to your doctor's appointment. Take someone with you because there's a lot of information to absorb. Ask all the questions and don't allow any of the medical professionals to make you feel rushed. It's important that you have a good understanding of this blood disorder which is not cancer but a precursor condition to multiple myeloma and sometimes other blood cancers. The rate of progression is very low typically so you want to get enough information so you know what to expect. The gains made in the treatment of multiple myeloma have been pretty phenomenal over the past decade. Even if your MGUS progresses, multiple myeloma is treatable.
Make sure you have a physician who listens to you and is willing to answer all your questions. Don't feel apprehensive about asking for a second opinion if you haven't found the right match yet.
I'm really glad you found the forum and I know that our members will help support you in your journey. We have members that have had MGUS for decades.I hope you will let me know how you are doing with all this and if you got the answers that you seek.

Patty, Volunteer Mentor | @pmm | Feb 12 4:42pm

In reply to @rebeccaakabeck "Hi. I do not see a pt. But I have 3 hematologist / oncologists. I'm headed..." + (show)

@rebeccaakabeck
How did your Mayo visit go?

Patty, Volunteer Mentor | @pmm | Jan 28 3:30pm

Yay! I hope your appointment goes well. Let me know how you fair with it.

dave7 | @dave7 | Jan 28 2:44pm

In reply to @pmm "@rebeccaakabeck Yes, I may have missed your response, but I caught that you are seeing a..." + (show)

I have an appointment tomorrow for Consultation regarding my ProNueoporty condition

rebeccaakabeck | @rebeccaakabeck | Jan 27 4:23pm

In reply to @pmm "@rebeccaakabeck Yes, I may have missed your response, but I caught that you are seeing a..." + (show)

Hi. I do not see a pt. But I have 3 hematologist / oncologists.

I'm headed to mayo so hopefully they can answer all of my questions.
Thanks for getting back to me!

Patty, Volunteer Mentor | @pmm | Jan 27 2:38pm

In reply to @rebeccaakabeck "Thanks" + (show)

@rebeccaakabeck
Yes, I may have missed your response, but I caught that you are seeing a Physical therapist, but were you also referred to a hematologist/oncologist? Sorry if I missed your response.

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