[dufreyne]

Is it really just MGUS or smoldering myeloma?

by dufreyne on Sat Jun 16, 2018 7:31 am

I'm a 52-year-old male with a two-month history of intermittent paresthesias. I was diagnosed with a B12 deficiency due to high Nexium (esomeprazole) use. In the midst of this, I was referred to the neurologist who ordered an SPEP. This resulted as positive for an M-spike. I was referred to a local oncologist who repeated the test and added some new ones.

I just met with the oncologist Thursday and the plan is to repeat testing in 3 months. It sounds reasonable to me, but just wondered if others have an opinion on what exactly it is that I have, and whether the plan to test again in three months is a good one.

Here are some numbers:

M-Spike (Initial): 0.39 g/dl
M-spike (Repeat, one week later): 0.20 g/dl

Protein Total 6.8 g/dL 6.0-8.0 g/dL
SPE Albumin 4.5 g/dL 3.4-5.2 g/dL
SPE Alpha 1 0.24 g/dL 0.20-0.40 g/dL
SPE Alpha 2 0.61 g/dL 0.40-0.90 g/dL
SPE Beta Globulin 0.64 g/dL 0.50-1.00 g/dL
SPE Gamma Globulin 0.86 g/dL 0.70-1.50 g/dL
SPE A/G Ratio 1.89
M-SPIKE 1 0.39 g/dL g/dL

Impression Monoclonal peak in the gamma region. No apparent monoclonal protein on serum electrophoresis.

Immunofixation electrophoresis, serum IgM kappa.

Protein, Total urine, random 14.9 mg/dL No reference range available for this random urine collection. Reference range is available for a 24 hr collection. mg/dL

Urine Electrophoresis Interp Raw urine protein concentration too low to measure fractions by electrophoresis.

Kappa Free Light Chains 1.93 mg/dL 0.33-1.94 mg/dL
Lambda Free Light Chains 0.40 mg/dL 0.57-2.63 mg/dL
Kappa/Lambda Ratio 4.83 0.26-1.65

LFTs, Renal Function, UA, CBC normal except:
MPV was slightly elevated at: 11.5

Current plan is to repeat these tests and add a 24-hour urine in 3 months. Peripheral neuropathy is better after B12 shots.

Thanks in advance.

Lee

[Multibilly]

Re: Is it really just MGUS or smoldering myeloma?

by Multibilly on Sat Jun 16, 2018 8:46 am

Hi dufreyne,

Welcome to the forum.

Nothing you have posted here suggests this is anything more than MGUS as this stage. Peripheral neuropathy is not that uncommon in IgM MGUS patients and others on the forum may suggest how they've treated their neuropathy. Also, getting re-tested in 3 months sounds like standard operating procedure for a newly diagnosed MGUS patient.

However, keep in mind that monoclonal IgM disorders are a different breed than other types of non-IgM monoclonal disorders. You may want to read through this article to better understand this point:

J Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein", The Hematologist, Sep 15, 2014 (full text of article)

I would also encourage you to seek out a myeloma specialist who has routine experience with IgM dis­orders. If you let us know what city you are in, folks on this forum can make some recom­menda­tions on where to find some specialists whose practices are primarily made up of myeloma patients.

[dufreyne]

Re: Is it really just MGUS or smoldering myeloma?

by dufreyne on Sat Jun 16, 2018 4:22 pm

Thanks very much, Multibilly. That is very helpful. I'll read it today.

I live in Oregon but am willing to travel anywhere. I work in the medical field (and know all of the local oncologists personally), so I'm looking to find a completely objective viewpoint on my circumstance. What's challenging is that the exact disease remains a bit muddy, so trying to find the right specialist without fully knowing the nature of the disease is the challenge. For now, I'm just focusing on docs who specialize in multiple myeloma. Does that sound right?

[Multibilly]

Re: Is it really just MGUS or smoldering myeloma?

by Multibilly on Sun Jun 17, 2018 11:42 am

An obvious choice in the Pacific Northwest is to go to the Seattle Cancer Care Alliance. They have a number of myeloma specialists there, including Dr. Edward Libby, who is a medical adviser on this forum. Should you ever need treatment, they can suggest and monitor a treatment regimen that can be administered down in Oregon by a local oncologist.

By the way, I just arrived in Rhododendron, Oregon on vacation. Oregon is such a drop-dead gorgeous state.

[GoDucks]

Re: Is it really just MGUS or smoldering myeloma?

by GoDucks on Sun Jun 17, 2018 2:18 pm

Good to know about Dr. Libby and Seattle. I had an autologous stem cell transplant at Oregon Health Sciences University (OHSU) in Portland in November 2017 and was very happy with the care I received. I live in Eugene Oregon and my local hematologist/oncologist is at Willamette Valley Cancer Institute, and there has been no problem coordinating the care there with the myeloma specialists at OHSU.

[dufreyne]

Re: Is it really just MGUS or smoldering myeloma?

by dufreyne on Tue Jun 19, 2018 1:47 pm

Thanks very much, GoDucks and Multibilly. I appreciate the advice.

A bit more context: I live in southern Oregon, so Portland and San Francisco are equidistant.

I'm in a bit of holding pattern right now, which takes some getting used to. I was never much good at waiting, event though that may be best. I will seek out a second opinion just to make sure. Recently I compiled a narrative document of my clinical history which may help paint the picture. I'm hoping this will help.

Thanks again.

Lee