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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

Do I have MGUS?

by dizz911 on Thu Oct 06, 2016 1:21 pm

Hello all.

Thank you for taking the time to read this.

In November 2014, monoclonal protein was discovered as part of endocrine blood testing and my consultant (in England) never even mentioned it. The initial findings were "IgG kappa typed, too small to quantitate". I Googled it after seeing it on the results printout and didn't realise until recently that ANY monoclonal protein is abnormal.

So, I requested my GP (here in Scotland) repeat the tests, the results of which are below:

Total Protein - 73 g/L (range 60-80)
Paraprotein 1 - 5 g/L (0.5 g/dL)
Paraprotein 2 - NA
Paraprotein 3 - NA
IgG - 16.4 g/L (range 6.0-16.0) High
IgA - 2.6 g/L (range 0.8- 4.0)
IgM - 1.1 g/L (range 0.4- 2.4)
Immunotyping - IgG kappa paraprotein

The lab report says there is no evidence of renal impairment or anaemia from recent blood samples, but recommends serum calcium, which I will have done next week.

My GP told me she would consult the lab to get advice on interpreting the blood work and the lab has recommended referral to a haematologist, which will be in approximately 4 months time (NHS waiting lists!).

I would greatly welcome any comments which might shed light or help me interpret these results. My reading leads me to believe it is MGUS, but I'm concerned that the IgG is just heading above range, and that having gone from monoclonal protein "too small to quantitate" to 5 g/L (0.5 g/dL) in two years is a bit of a leap.

Thank you x

dizz911
Age at diagnosis: 45

Re: Do I have MGUS?

by JimNY on Thu Oct 06, 2016 3:49 pm

Hi Dizz,

The criteria for a non-IgM MGUS diagnosis are as follows:

  1. Serum monoclonal protein (non-IgM type) < 30 g/L (3 g/dL)
  2. Clonal bone marrow plasma cell percentage less than 10%
  3. Absence of excessive calcium in the blood, signs of kidney failure, anemia, bone marrow lesions, or amyloidosis that can be attributed to a plasma cell disorder.
I'm assuming you have none of the symptoms described in item (3), such as elevated calcium levels in the blood, or low hemoglobin (which would signal anemia). But that's something you should check in your lab reports.

At 0.5 g/dl, your monoclonal protein (M-spike, paraprotein) level is low enough that it seems unlikely your bone marrow plasma cell percentage is above 10%. It would be necessary to do a bone marrow biopsy to assess the plasma cell percentage. However, I believe many (most?) myeloma specialists would put off doing such a biopsy given your low M-spike and lack of any other disease symptoms.

I think it's also a good sign that your IgA and IgM levels are completely within the normal range. Your IgG level is elevated because of the monoclonal IgG that is being produced (that is what is being measured by your M-spike).

Have you had a serum (blood) free light chain test done? If not, that is something you should consider having done.

I would be hesitant to draw any conclusions about how fast your monoclonal gammopathy is changing based on just two lab results. There's a margin of error associated with both results, meaning there could have been hardly any change in the gammopathy over time.

Do have any M-spike readings from between now and 2014? It's generally helpful to write down and track (graph) key readings like your immunoglobulin levels (IgG, IgA, and IgM), M-spike, free light chain results, hemoglobin, calcium. Just writing them down in a table will give you a better sense of what levels are normal, and whether changes are really significant.

I'm not a doctor, so you should take everything I've written with a grain of salt. But I think it's highly likely that what you have is just MGUS. I think it would be reasonable to have blood tests done at least every 6 months going forward, and perhaps every 3 months for the next year or so, to give you a better sense of whether or not things are changing.

JimNY

Re: Do I have MGUS?

by dizz911 on Thu Oct 06, 2016 4:44 pm

Hello Jim,

The results I posted are the only ones I have had because the first test had no follow up until now. I am await­ing serum light chain results as part of this latest batch.

Your advice to track results is excellent and I will set that up ASAP.

Thank you for taking the time to write such a clear and comprehensive reply, I really appreciate it.

dizz911
Age at diagnosis: 45

Re: Do I have MGUS?

by dizz911 on Tue Oct 11, 2016 7:08 am

Free light chain results are back:

Raised serum kappa light chains with abnormal ratio.

Free Kappa 43.5 mg/L (3.3-19.4)
Free Lambda 17.3 mg/L (5.7-26.3)
K/L Ratio 2.51 (0.26-1.65)


The lab comments were:

"In renal impairment, K/L ratio may increase to 0.49 - 3.0. Note IgG paraprotein. Ab­nor­mal free light chains. If there are no other features of lympho­pro­liferative disease, this MAY be MGUS. Estimated risk of progression is 21% over 20 years.

Suggest monitor FBC, creatinine, calcium, immunoglobulins, serum and urine electro­phoresis 3-4 monthly for 1 year, then annually. If unexplained abnormalities, symptoms or paraprotein increases by >5 g, consider haematology referral."


So, I'm unsure again as to what's going on, but I am very concerned. My GP has already in­sti­gated a haematology appointment. I think I will investigate the costs of seeing a haema­tol­o­gist pri­vately to see if that's maybe an option, as I will have a four-month wait on the NHS.

Insight and comments welcome!

dizz911
Age at diagnosis: 45

Re: Do I have MGUS?

by Wobbles on Tue Oct 11, 2016 10:36 am

Hi Dizz,

You did the smart thing to get your Scottish GP to repeat the tests. I am very surprised that the English doctor did not follow up the initial findings with regular blood tests.

One question you can ask your Scottish doctor is whether your IgG level (16.4 g/L) includes any contaminants from your IgG kappa paraprotein. She can ask the lab for that information. Sometimes (not always) it is difficult for the labs to separate paraproteins cleanly from the normal immunoglobulins.

When I first had my blood tested for immunoglobulins, my test results were similar to yours except that I had irregularities in the IgA region. I was diagnosed with MGUS only after I had had a bone marrow biopsy. My haematologist wanted to be sure she had a handle on the overall status of my bone marrow.

For what it is worth, I think you are on the right track to be worried about having MGUS.

Good luck.

Joe

Wobbles
Name: Joe
Who do you know with myeloma?: myself
When were you/they diagnosed?: June 2016
Age at diagnosis: 67

Re: Do I have MGUS?

by JimNY on Tue Oct 11, 2016 11:23 am

Hello Dizz,

So you've got an M-spike of 0.5 g/dL and a slightly elevated free light chain ratio due to an elevated kappa free light chain level. So it's rather clear you have MGUS; the remaining question is whether you have smoldering myeloma, active multiple myeloma, or perhaps some other plasma cell disorder.

It will be important to see what the serum calcium reading is. Also, what sort of imaging have you had done? Have you had a skeletal survey (xrays), or any MRIs or PET/CTs?

At some point you'll also have to decide whether to get a bone marrow biopsy. If the calcium reading is normal and the imaging results are negative for lesions of any sort, some doctors might opt not to do a biopsy. But some might. I'm not sure what the latest recommendation is on that front, but there's been some disagreement on that front among the physicians posting here in the forum. Here are two "go for the biopsy" opinions - Dr. Kapoor, and Dr. Kaufman. And here's one "I do not always do a biopsy" opinion from Dr. Valent.

JimNY

Re: Do I have MGUS?

by dizz911 on Wed Nov 16, 2016 8:49 am

Consultant Haematologist Appointment Update - November 16, 2016

The consultant was incredibly helpful and is a myeloma specialist, for which I feel very thankful. He mentioned that my age (45) and free light chain ratio (slightly raised) are certainly indicators to repeat the whole range of blood tests every three months for the next year in order to establish a pattern. The first repeat bloods will be at end of February and he may then review whether I should undergo a skeletal survey or bone marrow biopsy. Aside from the serum results I mentioned earlier in this thread, I additionally had FBC, calcium, and a renal panel done a few weeks ago. The results came back all within normal range. I have no other symptoms right now.

His current diagnosis is MGUS, which I'm obviously hoping will not progress for a long while yet.

Because of you guys and all the other participants on the Forum, I was able to understand what my consultant was talking about and to participate reasonably knowledgeably in the discussion. It has really helped reading about the personal experiences of those who are or have been in my position.

Thank you, one and all.

dizz911
Age at diagnosis: 45


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