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

@sharon55
Hi Sharon, I’m glad you found us too. I’m sorry about your back issues. It’s so miserable to have back pain. So who manages your MGUS follow up?
Patty

I vote for MD Anderson ! I have been a patient there since about 2005 for various other maladies. Last November 2022 was diagnosed with MGUS, so now I added a Dr. in the Myeloma dept to my list. Just had follow up appt. first week of February 2023 with Myeloma dept. and my annual appt. with Endocrinologist for bone density. I am now diagnosed with Hypercalcemia. Lots of blood work and 24 HR urine collection.

@redgiles Having a medical team to address your health issues is crucial. Sometimes we are lucky enough to have them all under one roof, sometimes we need to cobble the group together and be the hub of that wheel.

I'll be interested to read what all the testing and exams reveal to you.
Ginger

Hi, I have not posted to this group before, as I have mainly been focusing on my liver and pancreatic duct disease for which I will see a hepatologist on March 7.
I had a doctor's appointment last week during which we discussed some recent extensive lab work, and I was informed that my Lambda Kappa light chain ratio was elevated, but "slightly." I will have the test performed again in April. I was a bit struck when my doctor told me he was looking for multiple myeloma because my father died from the same disease.
I will be referred to a hematologist. I understand the disease more than I want to. I have avoided posting anything about my recent doctor visit because I am somewhat dumbfounded by this new information. It was so unexpected. Dealing with the liver/pancreatic issues has been hard enough. I have lost 25 percent of my body weight and struggle with my appetite. I have avoided reading anything on the internet about this disease because I do not want to become preoccupied with it. However, the mere fact that my doctor told me what he was looking for was enough to throw my limbic system into a freefall. I would appreciate any feedback with respect to what I should be doing or looking for in terms of symptoms, outlook and things of that nature. Also, I have avoided posting anything about this because doing so makes it all more real to me. I cannot discuss this with either of my sisters because they are struggling with their own issues, and they do not want to know anything about my health issues. I do have a good support system, a fairly positive attitude and am very active in my community, my artwork, my exercise and things of that nature. On the other hand, it is very difficult for me to eat, thus the weight loss.
Thank you very much.

I relate. I don’t have the liver treatment complication but when I read about MGUS before and after diagnosis I was freaked out. My white count soared which, in my mind, validated all my fears and I couldn’t eat, sleep and I swam in the river of self absorbed negativity. Yuck.
I had to step back and let my critical thinking kick in.
MGUS is a watch and wait diagnosis for the most part. The statistics are on our side as most of the time it does not advance to smoldering or multiple myeloma. Yay! So when your doctor says he’s looking, he’s going to watch your lab results to ensure that the MGUS is not advancing. In this regard, I just relax and let mine do his thing. He’ll tell me if things change.
I am not an expert but I don’t think I have any symptoms associated with MGUS. I have well controlled Type 2 diabetes. I have neuropathy in both feet. Some MGUS patients complain of neuropathy and/or skin rashes. Hard to know if my neuropathy is related to the MGUS or the type 2.
I think the objective is to eat, exercise and defend against all health issues as best we can. Psychologically, you know you. Do what you can to mitigate stress and anxiety. As you experienced how that mind-body connection works, protect yourself from stress as much as you can. You have a lot on your plate.
For me…I don’t use My Chart to read results before I am sitting with my physician who will answer my questions.
Dr Google is a pessimist. Not going there. It’s like preparing to go for a swim by reading about drowning. Nope.
I had to shop for a hematologist/oncologist. We don’t have cancer but in the unlikely event our MGUS progresses, I want my doc to be well-experienced and know me and my history. (You want a gastroenterologist who has done thousands of colonoscopies successfully rather than a rookie, right?). I am getting my care at a local cancer treatment center. They are the experts.
Live your life. I know you have other worries than MGUS but don’t think of the MGUS stuff as a foregone conclusion. It’s not.
So glad you checked in. Let us know how you are doing.

@gingerw

I had PTH-Related Peptide and Dihdroxyvitamin D 1,25 Level blood tests and
24 HR Urine for Calcium/Creatinine/Sodium for Hypercalcemia at local lab 2/15 after I returned home . She gave me a call Friday, 2/24 and wanted me to do one more blood test. So next day, back to lab for: Calcium Ionized, Venous.
Results should be back early this week.

She has a feeling that the Hypercalcemia is in someway connected to the MGUS. After results come back for this final test, she is going to consult with my Myeloma Dr. Then I should hear from her after that.

"Talk to you soon" !!

Jackie in Texas

Thank you very much for your kind response.
I also have neuropathy, but it is related to my weight loss. When I sit more than 30 minutes my feet/legs go numb. The neurologist suggested a donut pillow, which I will look into.
I have skin rashes that are more than likely due to the dilated pancreatic and liver ducts, but will find out more next month when I see the hepatologist, which took over 6 months to get the appointment. Sutter kept telling me I would never be able to see this doctor because she only treats those who need a transplant. After he told me this I called her office, and lo and behold they had been trying to reach me!
I filed a grievance against my gastroenterologist because of some things he told me, and the manner in which he showed great disrespect for me when I was asking questions.
If my father had not died of the myeloma, I probably would not be giving any thought/energy to this news; having said that, I am doing my best to remain positive, occupied and things of that nature.
Yes, I will live my life and will not give in to whatever is going on. It really is not my nature to sit around thinking about what is wrong with me, but I do tend to "overthink" everything.
You have provided me with hope. Thank you

I had a no cancer diagnosis, follow up with hematologist every three months, however 1st available appointment November 2023, on wait list! Diagnosis polycythemia Vera! Also have SLE!

I have a high kappa free light chain. My lambda and ratio are normal.

From my day of Google searching, I'm thinking I may have MGUS. It appears there is no MSpike.

I also have anemia. (That's why this blood work was done. I had surgery 5 months ago and still struggling with symptoms of anemia.)

Any info would be greatly appreciated. How were you diagnosed? Symptoms?

Welcome to this message board. I suspect you did like everybody else and consulted with Dr Google. Dr. google is such a pessimist.
My first and only recommendation because I’m not a physician or medical practitioner is to find yourself a really good oncologist/hematologist who can interpret your bloodwork for you. Like you, my Kappa free light chain is kind of off the hook with my Lambda within normal range. Your Hem/Onc doc will also look at the ratio as well. My ratio is also high. I was diagnosed with MGUS over a year ago. Like almost everybody else, my PCP was looking for something else when she found the M protein in my blood. It’s a little scary when they first start talking about multiple myeloma. But what I have learned since then, is that MGUS rarely progresses to smoldering or multiple myeloma and, in the unlikely event that it does, the treatment strategies are much improved, and it is certainly not a death sentence.
I get my blood drawn quarterly and then I see the doctor a couple of days later who can interpret the results for me. I do not fall into the trap of digging into my chart online, and trying to interpret them for myself. I mean, I have educated myself enough to look at the basics, but they also watch my kidneys my platelets, my white and red blood counts… I just want to look at the whole picture in relation to my overall health. It’s complicated. I’m a retired social worker, not a physician .
This watch and wait thing can be anxiety provoking, but I am reassured by the data, and I have learned to be patient and trust the process.
So do you live in a bigger city where you can connect to a hematologist/oncologist? I am fortunate that I can and there was availability for appointments with my current provider. I’m quite confident in his expertise and his handling of my MGUS. I do not recommend relying on your PCP to manage this for you. It is highly specialized stuff.
I’m glad you found this message board although I’m sorry for this worry for you. Please let us know how things go for you.

Wishing you the best… Patty.