[LMF9]

Focal lesions on MRI: is it now myeloma, not MGUS?

by LMF9 on Wed Apr 11, 2018 2:25 pm

Hello all,

Several months ago I was told I have "low risk" MGUS and yesterday I was told that I probably have multiple myeloma

M-spike 1.1 IgG kappa
FLC in normal range (1.58)
Trace IgG intact protein in urine (24-hr. collection)

In terms of "CRAB" I don't have the C, R or A. But, wait for it, yesterday the doctor called to tell me (and I was floored) that there are 7 "focal lesions" that "do not appear benign" per the full-body MRI I just had. One of them is over one centimeter and the rest are smaller but several over 5 millimeters. They are on spine and one on humerus.

I feel totally fine. I have no pain and I am an active walker, runner, rarely get sick, etc. I am the one that my friends always say is super healthy and will outlive them all. Now I am scared that I should start looking for a suitable gravesite.

I am now scheduled for a bone marrow biopsy in a few days and another MRI with contrast on the "focal lesion" areas. My mind is reeling now that these mysterious lesions have been discovered.

The doctor also said some confusing things to me. She said that there is "no bone destruction" and that an x-ray would not have picked up the lesions, but MRIs are more sensitive. She further said that if the bone marrow biopsy shows that the plasma concentration is low, meaning "too low to be active myeloma," then they would have to figure out another explanation for these lesions. She said this after I pressed her about my very low M-spike and other labs that don't look problematic at all (i.e. LDH, beta-2 microglobulin, albumin, etc., etc.; all totally normal).

So I'm wondering what to expect given my low M-spike, normal FLC, other labs fine, but with focal lesions and (apparently) full blown multiple myeloma. It seems like there is a disconnect here. I thought that folks with active multiple myeloma had higher M-spikes and very abnormal labs. I know there is a nonsecretory rare type of multiple myeloma, but I have a clear monoclonal protein band and thus it cannot be nonsecretory, right?

I also don't understand how the focal lesions can be myeloma defining events if they are just concentrations of clonal plasma cells without actual bone destruction.

Thank you. I am really scared.

[Multibilly]

Re: Focal lesions on MRI: is it now myeloma, not MGUS?

by Multibilly on Wed Apr 11, 2018 6:13 pm

Hi LMF9,

I'm sorry to hear about this development.

Note that myeloma is not broken into only secretory or truly nonsecretory camps. There can also be situations where one is only partially or minimally secretory and one's serum values won't necessarily reflect the true disease burden that is occurring within the bone marrow. So, it's good that you are getting a bone marrow biopsy to see what's going on there.

Regarding "myeloma defining events" (MDEs), keep in mind that the three non-CRAB MDEs were created based on the statistical likelihood that 80% of patients with one or more them "may" develop symptomatic myeloma within two years (as opposed to actually having current organ damage as defined by the CRAB MDEs).

When it comes to MDE discussions, I always like to point folks to this article,

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

and have them pay particular attention to Dr. Rajkumar's closing statement in the article:

"Finally, no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when con­tinued observation will be in the patients’ best interests."

Given your circumstances, you may want to also consider asking your doctor to run a PET/CT scan. If the focal lesions are indeed made up of cancerous cells, a PET/CT would show them lighting up like little Christmas lights on your scan. See this article as well:

Kapoor, P, "[url]To PET or not to PET[/url]," Myeloma Beacon forum post, Jul 24, 2014

Good luck with your bone marrow biopsy and let us know how things turn out.