[philget]

Diagnosed with MGUS (and maybe more)

by philget on Sat Apr 20, 2019 10:47 am

I've been lurking for a few days and thought I'd introduce myself. I'm a 72-year-old almost-retired healthcare worker who feels fine. A few weeks ago, I got a low albumin on a routine liver function test. That led to SPEP and immunofixation tests. My immunoglobulins are low and my free kappa is high (749), with a kappa-lambda ratio of 94.9. The kappa is monoclonal. Nothing else is monoclonal according to the report. I hope I said all that correctly. My primary says I have low-risk MGUS, but with a kappa like that, I don't think so. I have an appointment with a myeloma specialist at a myeloma treatment center in a few days. I've gotten a lot of information and support from this forum during the past week and I want to thank you all.

[Multibilly]

Re: Diagnosed with MGUS (and maybe more)

by Multibilly on Sat Apr 20, 2019 8:48 pm

Hi Philget,

Welcome to the forum, but sorry that you had to land here.

To be clear, your serum protein electrophoresis (SPEP) did not mention anything about an abnormal protein band, M-protein level, M-spike or anything else like that? If so, it sounds like you may have "light chain" MGUS. However, with a free light chain ratio of 96, you are very close to having a diagnosis of light-chain smoldering myeloma based on what you have shared thus far (a free light chain ratio > 100 with no signs of end organ damage would put you into the smoldering category).

It will be important to keep an eye on all of your myeloma-related markers over time, including your hemoglobin, creatinine, and calcium levels; your (kappa and lambda) serum free light chain levels and kappa-lambda ratio; and your IgA, IgM, and IgG.

I would not be surprised if the specialist also requests a 24-hour urine protein electrophoresis (UPEP), some radiological imaging, and potentially a bone marrow biopsy. Good luck with your visit with the specialist, and let us know how things turn out.

[Multibilly]

Re: Diagnosed with MGUS (and maybe more)

by Multibilly on Sun Apr 21, 2019 9:56 am

Allow me to modify my above comments. In the absence of having a bone marrow plasma cell count from a bone marrow biopsy, any results from a radiological imaging session, and assuming you indeed have no serum M-spike, a diagnosis of light-chain smoldering myeloma would require a urine M-protein (Bence Jones protein) count of ≥500 mg/24h from a 24-hour UPEP test. This is again assuming that you also have no end organ damage as defined by the myeloma "CRAB" criteria.

A serum free light-chain ratio > 100 would actually be considered as a "myeloma defining event" (MDE). See

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014

for a discussion on MDEs. However, be clear that having an non-CRAB MDE does not necessarily mean that a specialist would initiate any treatment based on that fact alone.

[philget]

Re: Diagnosed with MGUS (and maybe more)

by philget on Wed Apr 24, 2019 12:19 pm

Multibilly:

Thank you for your reply. Even before I posted, I noticed that you knew a lot about this stuff, so I appreciate you taking time for me. To answer your questions, I'll quote what the doctor who interpreted my tests said:

"Marked increase in free kappa with depressed IgG, IgA,and IgM.
Faint gamma restriction band with M-protein concentration of less than 0.10 g/dl. Will characterize by immunofixation.
Serum immunofixation: Monoclonal kappa light chain band present. This appears to be free kappa, although IgD and IgD are not evaluated in this study. Consider submission of urine to assess for expected Bence Jones protein."

I had a good talk with folks at the myeloma treatment center. I'll be going there next week for a PET/CT and bone marrow biopsy. I don't know whether I'll qualify for myeloma prevention or myeloma treatment, but I guess I will soon.

Thanks again.