[Kkatzmmeow]

MGUS, then smoldering, and now (perhaps) active myeloma?

by Kkatzmmeow on Sat Sep 16, 2017 11:52 pm

Hello,

I am a 67 year old female. My journey began at the end of 2016 when my nephrologist decided to run an Immunoelectrophoresis, as my GFR had dropped to 38. The results showed a kappa-lambda ratio of 4.26, so she referred me to an oncologist who ran another bunch of tests in December. Once again, kappa-lambda ratio high at 4.83, but immunofixation shows no mono­clonal protein. He felt at that time that I had MGUS and follow up in 6 months.

In May my kappa-lambda ratio had gone up to 5.02. He ran a beta2-microglobulin test which showed 5.21 mg/L. He also ran bone survey, MRI's, and PET scan, all of which were negative. He also did a bone marrow biopsy which showed 10% plasma involvement and FISH showed loss of 1p in 8% of tested cells. At that point he felt I had progressed to smoldering multiple myeloma.

I then decided to go to the University of Chicago for a second opinion. New blood work in August now shows GFR of 28 and kappa-lambda ratio of 8.10 and Immunofixation still shows no mono­clonal protein. I had a new bone marrow biopsy done at the end of August and am still waiting to review this and FISH with the doctor next week, but I'm afraid I may have progressed to active due to my kidney function.

Anyway, I have appreciated reading about so many different people's journeys.I guess this is just the beginning of mine.

[Multibilly]

Re: MGUS, then smoldering, and now (perhaps) active myeloma?

by Multibilly on Tue Sep 19, 2017 11:30 am

Hi Kkatzmmeow,

Welcome to the forum.

I would say that your numbers are a bit peculiar. You have a quite a high beta2 microglobulin level and obviously have reduced kidney function given your low eGFR - but you have normal immunofixation and electrophoresis test results, yet off-kilter free light chain values and not an excessively high bone marrow plasma percentage.

Have your doctors suggested the possibility of amyloidosis or light chain deposition disease (LCDD) and discussed the subject of getting a kidney biopsy? Note that kidney biopsies aren't as bad as they might sound. I had one done a few years back and I thought it was a breeze. They just carefully inject a long needle into your kidney with the help of real-time imaging...and you can be back to relaxing at home that same day with little or no pain afterwards. A kidney biopsy would quickly rule out either amyloidosis or LCDD.

[Kkatzmmeow]

Re: MGUS, then smoldering, and now (perhaps) active myeloma?

by Kkatzmmeow on Tue Sep 19, 2017 12:04 pm

Thank you for your reply, Multibilly.

I go to see the doctor tomorrow, so I'll be sure and ask him about amyloidosis or LCDD. As far as the kidney biopsy is concerned, the doctor felt sure he'd have his answers with the bone marrow biopsy.

Does this make sense, or would only a kidney biopsy be more likely to give the correct answer?

[Multibilly]

Re: MGUS, then smoldering, and now (perhaps) active myeloma?

by Multibilly on Wed Sep 20, 2017 11:03 am

If they ran a Congo red stain test as part of your bone marrow biopsy, that test "may" tell you if you have amyloidosis. But a Congo red stain test on a bone marrow sample may also not catch it, where­as a biopsy of a suspected organ (in your case, a kidney) will. As a compromise, you can also do a "fat pad" biopsy from your tummy, which I believe is more accurate than doing a Congo red stain test on a bone marrow sample, but not as accurate as doing a biopsy of an affected organ.

I'm not an expert on light chain deposition disease (LCDD), but I don't think LCDD will show up as a distinct disease in a bone marrow biopsy, and that you absolutely have to do a kidney biopsy to diagnose LCDD. There are several folks on this forum who have either LCDD or amyloidosis, and they may be able to comment better on just what's required diagnostic-wise for each disease.