[maryann117]

MGUS, smoldering, active myeloma, or something else?

by maryann117 on Tue Oct 24, 2017 6:07 pm

I’m not sure where to begin. I’m 57 and feel fine, no symptoms, no CRAB, none of the new myeloma-defining events (MDEs), good blood work. I thought I had a pretty good under­stand­ing of my situation. I’ve had the usual testing done, but not all at the same time (over the course of about a month) and different doctors. I had my head around what to expect based on my Urine (Random, then 24 hour UPEP), IFE, SFLC testing. Then I got the SPEP and more urine and now I’m not so sure I understand it. It doesn’t exactly line up with any of the diagnostic criteria for MGUS.

The backstory is that I had some testing done for an unrelated GI issue. It showed GFR slightly low at 59 (labeled as Stage 1-2 CKD) and some scarring on both kidneys. Both conditions have been relatively stable with the GFR at that number and a little lower for years, but no one paid attention to it or the scarring. I asked if I should have it checked out and went to a nephrologist. He ordered a random urine, Serum FLC, Serum IFE, and the M-spike showed up. Bone marrow biopsy is the only thing not done.

The wealth of information here is amazing and thanks to all of you who tirelessly support and contribute to it. It has been invaluable to me. I’d love any insight you might have to offer.

My results:
(I’m sorry there is so much - I didn’t want to leave anything out, [] values are my calculations)

Albumin/Creatinine Ratio

Component Std Range Your Value
Urine Creatinine 20 - 320 175 MG/DL
Microalbum <0.2 MG/DL
Microalbum/Creat Ratio unable to calculate

Random Urine

Component Std Range Your Value
Urine Protein mg/dl 5 - 24 17 MG/DL
random urine creatinine 20 - 320 177 MG/DL
Urine Protein mg/g
Creatinine 21 - 161 96 MG/G creatinine
Albumin %, Urine 14.38 % [2.44 mg/dl]
Alpha-1-Globulin % 6.71 % [1.14 mg/dl]
Alpha-2-Globulin % 16.71 % [2.84 mg/dl]
Beta Globulin % 25.45 % [4.33 mg/dl]
Gamma Globulin % 36.74 % [6.25 mg/dl]

Interpretation: Monoclonal protein present. Suggest urine immunofixation for identification. Monoclonal spike 14.20% [2.4 mg/dl]

Serum IFE

Immunofixation electrophoresis demonstrates a small band in IgG kappa which may be indicative of a monoclonal immunoglobulin. Clinical correlation recommended for interpretation.

Serum FLC

Free kappa 3.3 - 19.4 36.2 mg/l h
Free lambda 5.7 - 26.3 27.2 mg/l h
Free K/L ratio 0.26 - 1.65 1.33

Based on all the above, I concluded I was MGUS IgG Kappa, saw a oncologist/hematologist and he ordered a bone survey, 24 hour UPEP and SPEP:

Bone Survey:

Negative

Frontal and lateral radiographs of the skull demonstrate no appreciable osseous lesions. No fractures are detected.

Frontal and lateral views of the cervical spine demonstrate moderate to advanced degenerative disc disease in the lower cervical spine. Prevertebral soft tissues are within normal limits. Vertebral body heights are normal. No osseous lesions are detected by radiographs.

Immunoglobulins Quantitative

Component Std Range Your Value
IGA 81 - 463 306 MG/DL
IGG, SERUM 694 - 1618 902 MG/DL
IGM 48 - 271 111 MG/DL

UPEP

Total volume 492 ml
Total protein mg/dl 22 mg/dl
Protein,total,24 hour urine 108 mg/24 hours
Creatinine,urine 213 mg/dl
Protein/creatinine ratio 103 mg/g
- Ref <85mg/g creatinine
Albumin % 10.57
Alpha-1-globulin % 2.96
Alpha-2-globulin % 16.34
Beta globulin % 23.70
Gamma globulin % 46.42

Monoclonalprotein present. Suggest urine imunofixation for identification. Monoclonal spike 15.89% [17.16 mg/24 hours, considerably less than <500 mg/24 hours] or [3.5 mg/dl]

Urine Immunofixation

Urine immunofixation reveals two small bands of kappa light chains. Consider repeat of urine immunofixation in 6-12 months if clinically indicated.

Urine Light Chains

Total volume 492 ml/24 hours
Neasured kappa chains 6.19 reference <2mg/dl
Kappa light chains 30.45
Measured lambda chains 0.65
Lambda light chains 3.20

SPEP

Component Std Range Your Value
Total Protein 6.2 - 8.3 6.0 G/DL
Albumin 3.8 - 4.8 3.2 G/DL
ALPHA 1 0.2 - 0.3 0.3 G/DL
ALPHA 2 0.5 - 0.9 0.8 G/DL
Beta-1-Globulin 0.4 - 0.6 0.4 G/DL
Beta-2-Globulin 0.2 - 0.5 0.4 G/DL
Gamma Globulin 0.8 - 1.7 0.8 G/DL

That’s it. No M-spike on the SPEP. So I was convinced I have IgG kappa MGUS, and now with the new urines and SPEP I’m confused as to whether I have IgG kappa MGUS, or light chain MGUS, or myeloma, or something else.

Thanks for your patience if you made it this far.

[Multibilly]

Re: MGUS, smoldering, active myeloma, or something else?

by Multibilly on Tue Oct 24, 2017 8:55 pm

Hi Mary­ann,

Since your immunofixation detected an IgG-kappa spike, but your SPEP couldn't measure it, my initial thought is that you do have an M-spike, albeit very small. Also, keep in mind that serum immuno­fix­a­tions are more accurate at detecting M-spikes than SPEPs are.

But also note that the presence of both high kappa and high lambda free light chain levels, along with a normal ratio, may suggest that the elevated free light chain levels are in part due to your renal im­pairment. For more details on this possibility, see the table that Ron Harvot posted in this forum thread:

https://myelomabeacon.org/forum/increase-in-free-light-chains-t5384.html

In any case, both your urine and serum tests are picking up M-spikes, so clearly you've got some monoclonal process going on here. Since you are also experiencing some renal impairment, I might suggest discussing getting a bone marrow biopsy (along with a red Congo stain test) to see if the biopsy results correlate with your serum and urine lab results, and to rule out a case of minimally secretory myeloma or amyloidosis. I would then follow up with the nephrologist to see if he/she thinks any further renal testing might be warranted.

If it is indeed light chain MGUS instead of "regular" MGUS, there really isn't any difference in what you would do at this stage. So the distinction is really a bit academic.

Others on the forum may have some different ideas about what's going on here. As always, I'm not a doctor, and I'm just throwing out some ideas to discuss with your doctors.

[maryann117]

Re: MGUS, smoldering, active myeloma, or something else?

by maryann117 on Wed Oct 25, 2017 4:41 pm

Thank you, Multibilly, for your response (and the reference to the table).

It's inline with what I was thinking except for the minimally secretory myeloma or amyloidosis. I've only had one meeting with both nephrologist and hematologist-oncologist, and at the time all my blood / urine results weren't in. Both of them seemed to downplay the numbers and basically told me they didn't think there was anything to be concerned about. As such, I'm not sure they will think a bone marrow biopsy is in order. I have appointments with both the first week of November and was hoping to have some feedback from here before then. So thank you again.

[Multibilly]

Re: MGUS, smoldering, active myeloma, or something else?

by Multibilly on Wed Oct 25, 2017 7:58 pm

Hi Maryann,

A couple of things to keep in mind as you follow up with your docs.

If there is any suspicion of amyloidosis, the best ways to confirm it (in order) are:

1. A Congo red stain test of a kidney biopsy sample.
2. A Congo red stain test via a fat pad biopsy of your tummy.
3. A Congo red stain test via a bone marrow biopsy (the least accurate test since it could return a false negative depending on whether the suspect amyloid protein had made it into your bone marrow or not).

Also, if you feel strongly about getting a bone marrow biopsy and your current oncologist doesn't agree, it's always good to seek out a second opinion from another myeloma specialist. Folks on this forum can help you find a local center with myeloma specialists if you let us know where you are located.

Good luck and let us know how things turn out.

[maryann117]

Re: MGUS, smoldering, active myeloma, or something else?

by maryann117 on Thu Oct 26, 2017 7:56 am

Thanks again, Multibilly. I really appreciate this forum and your contributions to it!

I'll update after my next appointment on November 7th.

[maryann117]

Re: MGUS, smoldering, active myeloma, or something else?

by maryann117 on Thu Nov 09, 2017 2:48 pm

Just an update after my visit with my oncologist/hematologist. He thinks that my labs are overall pretty good, but in order to be certain, he suggested a bone marrow biopsy and a PET scan. I didn't even have to try to convince him. He indicated that he would include the Congo red stain on the bone marrow biopsy to check for amyloidosis at the same time. He thought the PET scan could also help rule out hunting for localized amyloid sites. Pending the results of that, probably a fat pad biopsy.

So while he doesn't seem to think there is any specific reason to think it's anything other than MGUS, based on what I've read and learned here, it does appear that he's taking the right steps to eliminate potential nonsecretory myeloma and amyloidosis.

I'll continue to give updates, since they have been very helpful to me as I research, but would appreciate feedback on the current approach.

Thanks,
MaryAnn

[maryann117]

Re: MGUS, smoldering, active myeloma, or something else?

by maryann117 on Tue Dec 12, 2017 5:59 pm

Made it through the bone marrow biopsy and just reviewed the results today with my hematologist-oncologist. 0% plasma cells in aspirate, 4.3% in the core samples with no chromosomal abnormalities. Congo red stain negative. The PET scan wasn't done (rejected by the insurance company). Based on the bone marrow biopsy result, no issues in blood or bone survey, and absolutely no symptoms, my hematologist-oncologist doesn't feel the PET needs to be pursued at this time. I'll have labs again in 6 months to see if everything is stable and adjust as necessary. This sounded reasonable based on my research. So for now, I'm at the MGUS stage and hope to stay there.

Thanks to all for the input, it's been a big help.