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MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
Blood Cancers & Disorders | Last Active: Jun 9 1:13pm | Replies (181)Comment receiving replies
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.
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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.