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

Don’t wait till the 23rd. Call your physician. Yes, they are busy but I imagine your anxiety is worse than their stress.
I purposefully do not look at lab results until I am sitting in my doctors office and we go over them together. I schedule a lab appointment the day before I see my physician.
Ginger likes Dr Google but i do not. She is a harsh diagnostician and her glass is truly half empty. I avoid her rigidly. But you may have more tolerance than I do for her worst case scenario fixation. 😉
Let us know what your doctor says, but you do not have to wait until the 23rd. Do give him or her a call. If nobody from your doctors office will at least take a perfunctory look at these labs with you on the phone or in person, that’s harsh to expect you to wait. I’m sure my hematology/oncology physician rolls his eyes, but he will call me back and go over things if I am stressed out.
Best of luck.

Oh and welcome to the group!

Thank you. I called the office on the day I received the results and practically begged to have someone give me a brief overview of what the results meant. However, I was told by the receptionist that if I haven’t received a call to come in before my appointment on the 23rd then there isn’t anything to worry about. Nevertheless, I’m still concerned and would like some sort of reassurance that my MGUS hasn’t progressed to cancer.

@pmm Sorry, I don't like Dr Google! In my experience, it can be way too misleading, and unreliable websites lead us down a path of doubt.
Ginger

Oh sorry! I hadn’t had my coffee and misread!
Yes! Dr Google often scares me then once I get a interpretation from my doctor I feel much better.

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!

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

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

Deborah, my relationship with both are vicarious with my late husband and good friend…Mayo and MD Anderson respectively.
My husband was diagnosed with terminal lung cancer at age 58. We went to Mayo for a second opinion and although they were unable to offer treatment beyond what he was already receiving, David got good care and I believe the workup was beneficial in that it affirmed our treatment strategy. We were living in Western South Dakota so we went to Rochester. I would probably opt for Phoenix as I have braved enough North Country winters.
My good friend’s spouse was a patient at MD Anderson quite recently. He, like David, was fighting hard to beat a terminal cancer. They gave him some more good time which is precious if you have good quality of life.
So I would choose one or the other. Both have outstanding clinicians, well-qualified to treat Multiple Myeloma patients.
My lambda/kappa free light chain ratio is inching up but still well below the threshold of treatment. Statistically, my particular flavor of MGUS is likely to progress. Could be soon, could be 15 or more years from now. If I got a vote I would prefer later than sooner! Better yet, not at all.
I am a empiricist at heart. They (major research facilities) are making great strides in the treatment of multiple myeloma. I believe that we MGUS patients will benefit from that research.
Keep the faith.
Patty

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!