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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. I have been living with MGUS for at least 2 years, but only had complete lab work to better "stage" it a few months ago. While my M-spike protein is stable at 0.4, my Lambda Free Light Chain is high (15.9 mg/dL), and my Kappa Lambda FLC Ratio is very low (0.0830). I am worried about the ratio in particular so I emailed my hematologist to get her opinion on whether this meant I was more likely to progress to MM. Her response that it doesn't put me at higher risk per se didn't alleviate my anxiety. I am wondering if I should be consulting a specialist at a cancer center like Mayo Clinic. I really appreciate your opinions from the group. Thank you very much!
Replies to "Hi. I have been living with MGUS for at least 2 years, but only had complete..."
I just joined. I was diagnosed with MGUS in December 2018. I know I haven’t seen the hematologist since 2019. I have had severe back issues & I have had 5 lumbar fusions since 2018. I am scheduled for a revision & fusions next month. I have IgG lambda monoclonal gammopathy. I’m glad I found this site!
@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
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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