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MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
Blood Cancers & Disorders | Last Active: Aug 3 1:59pm | Replies (203)Comment receiving replies
Hi Deborah, what kind of practice are you working with now to have your bloodwork monitored? I encourage you to consult with a hematologist/oncologist at a treatment center that treats Multiple Myeloma and works with lots of MGUS patients.
A second opinion will either fortify your confidence in your current provider or will encourage you to cast a broader net for treatment options.
For me it is essential that I have a physician who is both knowledgeable and experienced. I am monitored at a Cancer treatment facility locally. If my numbers get wanky and there is progression to Smoldering or Multiple Myeloma, I will consult with the experts at Mayo or MD Anderson. I am confident in my current physician, but I will seek out a second opinion for my own peace of mind.
Try to remember that statistically, MGUS rarely progresses. The data is on our side. If we get good monitoring in the unlikely event that we do progress, we will know very early and treatment will start right away.
Try to avoid that hand-wringing Dr Google. Don’t live with any doubt about the efficacy of your current treatment and enjoy your life. Anxiety literally makes us feel bad.
Patty
Replies to "Hi Deborah, what kind of practice are you working with now to have your bloodwork monitored?..."
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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Hi Patty, Thanks so much for responding with your sage advice. It really helps me to hear from other in similar MGUS situations. In answer to your question, I'm a patient of a hematologist at the Schar Cancer Institute associated with the INOVA Fairfax (VA) hospital. I go back in April, and if my numbers continue to progress, I will definitely make an appointment with an expert at one of the better known cancer centers. May I ask how you chose Mayo or MD Anderson? Are they better than other centers such as Memorial Sloan Kettering or Johns Hopkins? I hope you continue to be stable.
Deborah