[robinblessed54]

Another case of accidental MGUS

by robinblessed54 on Sun Jan 28, 2018 1:05 am

Hello, and this is my first post.

I have heard that most MGUS diagnoses are by accident. My MGUS was dis­covered through a chain of events.

First, I am a breast cancer survivor. I also have IBS, and chronic constipation. I went to see a gastroenterologist to find out what she could do for me. She wanted to check for Celiac and took blood tests. My IgA came back as <6! She retook it because she said that it must be a mistake. It came back the same.

When I saw my oncologist-hematologist, she did further tests. She said I had high protein in my blood and the only way to make sure was to do a bone marrow biopsy.

The good news was no multiple myeloma. But when I saw her January 5, she said I had mono­clonal gammopathy. We will watch and do tests every 6 months. So if I hadn't gone to the gastro­enterologist and she didn't do that IgA, IgG and IgM, I wouldn't have known about it.

I don't know if there is a connection between breast cancer and this, but when you have already gone through one cancer, you are diligent to get as much information as possible.

I also have Hashimotos thyroiditis. Other discussions here in the forum have talked about auto­immune diseases and MGUS. I don't know how that all plays together. So, I go on with my day-to-day life trying not to look over my shoulder for the big "C" to rear its head somewhere else in my body.

God bless,
Robin

[Eileenk]

Re: Another case of accidental MGUS

by Eileenk on Mon Jan 29, 2018 8:33 pm

Hi Robin,

Welcome to the forum. You will find this to be a wealth of information. I am fairly new to this (recently diagnosed smoldering), but do believe it is very important to see a myeloma specialist. Have you researched to see if there are any in your area?

Was your gastrointestinal doctor able to help your IBS symptoms, or did that get put on the back burner while you went through the testing for multiple myeloma?

I do believe there is some link with the autoimmune diseases, I suffer with Crohn's disease, am a 7-year breast cancer survivor, and have been told by my endocrinologist that he believes I have Hashimoto's, yet no treatment is needed yet. So you and I share some of the same yuckiness.

You sound like you have the right attitude. You are a survivor, you got this. Stay positive and enjoy every day.

Be well.
Eileen

[robinblessed54]

Re: Another case of accidental MGUS

by robinblessed54 on Mon Jan 29, 2018 11:40 pm

Thanks Eileen!

My gastroenterologist was able to help me with the IBS. I have a “cocktail” I take twice a day to keep it moving. I didn’t even mention that she repeated my colonoscopy after only 3 years from a clean one. I went from 0 polyps to 7 in 3 years. They were small and adenomas, but now I have one every 3 years. It concerns me.

My oncologist for my breast cancer is a hematologist as well, which is why she did more tests.

My kappa free light chain level was 16 mg/L, lambda 10, and kappa-lambda ratio 1.6. I am waiting to get a hard copy of my bone marrow biopsy pathology report.

Thanks for your input.
Robin

[robinblessed54]

Re: Another case of accidental MGUS

by robinblessed54 on Wed Jan 31, 2018 1:35 pm

Well, I finally got a hold of my labs and pathology reports.

IgG= 2,147
IgA= <6
IgM= <17

Abnormal Proteins- no number given, high gamma globulin.
The path report said the cells were 2-4%. Also, they called it benign monoclonal gammopathy, no mention of undetermined significance. Made up of mostly T-cells with some B-cells.

By the way, I have spondylolitshesis in L4 and L5. I have a lot of hip pain on the left side but not that much back pain. My tail bone hurts and my sit bones are always tender. That is the side they took the bone marrow from.

I don't think there is a connection between breast cancer and MGUS or myeloma, but it is kind of weird that my CA 15-3 score it went up when all this started. I have had a nuclear bone scan to check for metastatses to bone and that was clear.

So at least I have something to go on and learn about. I don't have my report in front of me so if I missed anything, I will add to another post.

God Bless, Robin

[robinblessed54]

Re: Another case of accidental MGUS

by robinblessed54 on Mon Feb 19, 2018 7:20 pm

Finally figured out my M protein number; It's 1.61. I know that is 0.01 above the normal, so not too high.

Here is what it says for Immunofixation result, serum interpretation immunofixation:

Band of restricted mobility of IgG Lambda. Consider retesting if clinically indicated.

Here is what it says for the Protein Electrophoresis, Serum:

Gamma Globulin: 1.61 - High and Abnormal.

Bone Marrow Biopsy says

Sheets of plasma cells are not seen.
Approximately 2-4% scattered plasma cells; no definite monotypic plasma cells demonstrated by immunohistochemistry.

Thanks,
Robin

[Cheryl G]

Re: Another case of accidental MGUS

by Cheryl G on Tue Feb 20, 2018 10:09 pm

Hi Robin,

I don't think 1.61 is your M-spike. It's your gamma globulin level, which is not the same as your M-spike.

Your M-spike will be reported on your serum protein electrophoresis (SPEP) report, which you have labeled "Protein Electrophoresis, Serum". It's the one that also has the gamma globulin number (but, again, the gamma globulin level is not your M-spike).

On your serum protein electrophoresis, the M-spike will be described either as an "Abnormal protein band", "Monoclonal protein", "M-spike", "Paraprotein", or perhaps some combination of these phrases. The M-spike (monoclonal protein level) estimate also may be in the "Interpretations" or "Discussion" or the results, which usually is at the end of the report.

Your immunofixation report says that you have IgG lambda MGUS. This is reflected in the fact that your IgG level is high. It's high because your body is producing both polyclonal (healthy / normal) IgG and monoclonal (abnormal) IgG.

Given the "normal" range for IgG in people without MGUS, and given that your IgG level is 2,147 mg/dL, your M-spike is probably about 1100 mg/dL, or 1.1 g/dL. But that's just a guess; your M-spike could be as low as 0.5 g/dL or as high as 1.5 g/dL (or even higher).

Always remember that most people with MGUS never see the condition progress to anything serious. Many people with MGUS don't even know they have the disease.

Good luck!

P.S. - The thread at the link below discusses how to come up with M-spike estimates when you only know what type of MGUS or myeloma you have (IgG, IgA, etc.), and what your immuno­globulin (Ig) levels are:

"Estimating M-spike from immunoglobulin results?" (started Jan 11, 2018)