I have been followed for some time for polycythemia vera (which is a bone marrow disease). At the last visit with my hematologist, he noticed elevated protein. Did immunofixation; quantitative immunoglobulins (3800 IgG), all others were normal, K/L ratio was elevated.
I also had fully body x-rays and bone marrow biopsy (waiting for results).
He mentioned MGUS as all of my labs are normal, no anemia, etc., and no symptoms.
I am totally confused and have some questions. Can anyone help?
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Re: May have MGUS, have some questions
Hi Jason,
Welcome to the forum.
If they did a blood serum immunofixation (IFE), this test would tell you if your elevated IgG was monoclonal or not. You want to go back and look at the IFE lab results and see what notation was made about the presence of any monoclonal protein (may also be called "paraprotein", "M-protein" or "abnormal protein", etc). It will likely say that you may have IgG kappa monoclonal protein that was detected, or something like that. Please let us know what it says.
Can you also share what your kappa, lambda and free light chain ratios (K/L) values were?
A standard test to run in conjunction with these other tests would be the Serum Protein Electrophoresis Test (SPEP). The IFE test tells you if you have any monoclonal protein (cancerous protein). The SPEP actually measures that monoclonal protein level. It should be noted using one of the monoclonal protein names I outlined above. Please also share that value.
You also want to be looking at your hemoglobin, calcium, and creatinine levels in your various blood tests to make sure that you have no organ damage that is resulting from the monoclonal gammopathy. It sounds like you and your doctor are already on top of these markers, so that is good news.
Having the results of the bone marrow biopsy and full body xray will be important in helping to figure out the final diagnosis. Note that if you do have a monoclonal gammopathy such as MGUS, folks on this forum would strongly advise seeking out a hematologist who specializes in multiple myeloma. If you let us know what city your are in, we can make some recommendations on where to find these specialists.
Good luck and let us know if we can help. And keep in mind that the risk of MGUS developing into symptomatic multiple myeloma is only about 1% per year, so try not to worry too much about this initial diagnosis.
Welcome to the forum.
If they did a blood serum immunofixation (IFE), this test would tell you if your elevated IgG was monoclonal or not. You want to go back and look at the IFE lab results and see what notation was made about the presence of any monoclonal protein (may also be called "paraprotein", "M-protein" or "abnormal protein", etc). It will likely say that you may have IgG kappa monoclonal protein that was detected, or something like that. Please let us know what it says.
Can you also share what your kappa, lambda and free light chain ratios (K/L) values were?
A standard test to run in conjunction with these other tests would be the Serum Protein Electrophoresis Test (SPEP). The IFE test tells you if you have any monoclonal protein (cancerous protein). The SPEP actually measures that monoclonal protein level. It should be noted using one of the monoclonal protein names I outlined above. Please also share that value.
You also want to be looking at your hemoglobin, calcium, and creatinine levels in your various blood tests to make sure that you have no organ damage that is resulting from the monoclonal gammopathy. It sounds like you and your doctor are already on top of these markers, so that is good news.
Having the results of the bone marrow biopsy and full body xray will be important in helping to figure out the final diagnosis. Note that if you do have a monoclonal gammopathy such as MGUS, folks on this forum would strongly advise seeking out a hematologist who specializes in multiple myeloma. If you let us know what city your are in, we can make some recommendations on where to find these specialists.
Good luck and let us know if we can help. And keep in mind that the risk of MGUS developing into symptomatic multiple myeloma is only about 1% per year, so try not to worry too much about this initial diagnosis.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: May have MGUS, have some questions
Hi.
I am very nervous and scared. I have 7 young children. I live in New York. I see a hematologist every six weeks. It has always been well managed. At my last appointment, the hematologist noted my total protein was 9.3.
He did a quantitative immunoglobulin which reflected iGg of about 3800. All other immunoglobulins were normal. He also did a kappa / lambda light chain test which was elevated. Both kappa and lambda were elevated. (Which I can't figure out) The k/l ratio was also elevated at 7.8.
The doctor did SPEP / immunofixation, bone marrow biopsy (BMB), and full body x-rays - which are pending.
I had a BMB 2 years ago for the polycythemia which, while showed signs of polycythemia, did not reflect any plasma issues.
I have no symptoms and all other labs from CBC and CMP were completely normal.
He said that he has other patients with MGUS, however that the BMB defines it, which leads me to believe at very least it's MGUS.
I am also confused because both kappa and lambda are high as well as ratio.
Serum kappa free light chain 367.17 3.30-19.40
Serum lambda free light chain 47.16 5.71-26.30
Serum kappa / lambda ratio 7.786 0.260-1.650
IgG Quant 3830 700-1600
IgA Quant 253 70-400
IgM Quant 74 40-230
Albumin 4.0 3.5-4.9
Bilirubin Total 1.2 0.1-1.2
Calcium 8.8 8.5-10.5
Chloride 99 96-108
Creatinine 0.90 0.70-1.40
Glucose 88 65-139
Alk.phosphatase 90 30-110
Potassium 4.2 3.5-5.0
Protein Total 9.2 6.0-8.3
Sodium 135 135-145
AST (SGOT) 39 1-50
Urea Nitrogen 12 10-30
CO2 Total 31.0 22.0-32.0
ALT(SGPT) 38 1-53
EGFR African Am >60.00 ml/min/1.73m
EGFR Non-Afr Am >60.00 ml/min/1.73m
I take interferon for the polycythemia and thought that may be skewing something since interferon is an immunomodulator.
Please. Any comments are appreciated.
I am very nervous and scared. I have 7 young children. I live in New York. I see a hematologist every six weeks. It has always been well managed. At my last appointment, the hematologist noted my total protein was 9.3.
He did a quantitative immunoglobulin which reflected iGg of about 3800. All other immunoglobulins were normal. He also did a kappa / lambda light chain test which was elevated. Both kappa and lambda were elevated. (Which I can't figure out) The k/l ratio was also elevated at 7.8.
The doctor did SPEP / immunofixation, bone marrow biopsy (BMB), and full body x-rays - which are pending.
I had a BMB 2 years ago for the polycythemia which, while showed signs of polycythemia, did not reflect any plasma issues.
I have no symptoms and all other labs from CBC and CMP were completely normal.
He said that he has other patients with MGUS, however that the BMB defines it, which leads me to believe at very least it's MGUS.
I am also confused because both kappa and lambda are high as well as ratio.
Serum kappa free light chain 367.17 3.30-19.40
Serum lambda free light chain 47.16 5.71-26.30
Serum kappa / lambda ratio 7.786 0.260-1.650
IgG Quant 3830 700-1600
IgA Quant 253 70-400
IgM Quant 74 40-230
Albumin 4.0 3.5-4.9
Bilirubin Total 1.2 0.1-1.2
Calcium 8.8 8.5-10.5
Chloride 99 96-108
Creatinine 0.90 0.70-1.40
Glucose 88 65-139
Alk.phosphatase 90 30-110
Potassium 4.2 3.5-5.0
Protein Total 9.2 6.0-8.3
Sodium 135 135-145
AST (SGOT) 39 1-50
Urea Nitrogen 12 10-30
CO2 Total 31.0 22.0-32.0
ALT(SGPT) 38 1-53
EGFR African Am >60.00 ml/min/1.73m
EGFR Non-Afr Am >60.00 ml/min/1.73m
I take interferon for the polycythemia and thought that may be skewing something since interferon is an immunomodulator.
Please. Any comments are appreciated.
-
jrappa - Name: Jason
Re: May have MGUS, have some questions
I spoke to my doctor and he indicated that I had kappa MGUS. This is what he wrote.
What I am confused about is I asked about the size of the "spike" and he said it is kappa, then I said, so there is no spike and he responded "i didn't say there was no spike," so I am totally confused.
What I am confused about is I asked about the size of the "spike" and he said it is kappa, then I said, so there is no spike and he responded "i didn't say there was no spike," so I am totally confused.
I reviewed the bone marrow with the hematopathologist and you do have a small percentage (still to be formally calculated) of plasma cells that stain positive for the kappa light chain that was detected in the blood. Did not look sufficient number to call it multiple myeloma or even smoldering myeloma. However, as I told you, it takes time for the remaining studies to return, such as the chromosome studies. I also reviewed the x rays with the radiologist this morning and they are fine. You appear to have at this point a kappa monoclonal gammopathy of undetermined significance and not overt multiple myeloma.
I would like to add a couple of additional blood and this time urine studies to look at protein levels in your urine. Once I have everything back I have already asked my colleague to review and determine if anything more needs to be done to confirm the diagnosis and if he should see you as well.
Please stop by this week when you are able to do so to have the additional studies completed.
I hope you find this reassuring although again not fully complete in the evaluation. Appears less aggressive and more benign in nature.
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jrappa - Name: Jason
Re: May have MGUS, have some questions
You said that you had the results of an SPEP test that were pending. Do you have a copy of that test? It would indicate somewhere on there whether there was a measurable M-spike. It might be called a monoclonal protein level paraprotein level, abnormal protein, etc and would have a value associated with it.
Your elevated IgG would make it more likely that there was a detectable M-spike that was found on your SPEP, although it could be elevated due to other reasons. The presence of a serum M-spike would raise the level of one of your immunogloblulins, such as the IgG immmunoglobulin.
If your doctor really meant "kappa MGUS", then this could likely mean he was talking about light chain restricted MGUS where there is no M-spike present in the blood (that happens with a fair percentage of patients). But then the question again becomes why is your IgG level elevated if you have light chain restricted MGUS?
You can just ask your doc for copies of all your lab results when you see him next if you don't have your own copies.
It's good news that very few plasma cells were detected in your bone marrow biopsy and that your xrays came back clean. As stated before, the risk of MGUS progressing to multiple myeloma is very low at 1%/year, so try not to worry. It also sounds like you will have more answers when you get some additional tests done in the near future.
Your elevated IgG would make it more likely that there was a detectable M-spike that was found on your SPEP, although it could be elevated due to other reasons. The presence of a serum M-spike would raise the level of one of your immunogloblulins, such as the IgG immmunoglobulin.
If your doctor really meant "kappa MGUS", then this could likely mean he was talking about light chain restricted MGUS where there is no M-spike present in the blood (that happens with a fair percentage of patients). But then the question again becomes why is your IgG level elevated if you have light chain restricted MGUS?
You can just ask your doc for copies of all your lab results when you see him next if you don't have your own copies.
It's good news that very few plasma cells were detected in your bone marrow biopsy and that your xrays came back clean. As stated before, the risk of MGUS progressing to multiple myeloma is very low at 1%/year, so try not to worry. It also sounds like you will have more answers when you get some additional tests done in the near future.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: May have MGUS, have some questions
Multibilly,
Thank you. Yes. He did clarify. I have kappa light chain with no spike. The elevation in IgG is polyclonal, which is confusing. Said it could be reactionary, auto immune, inflammation, etc.
I did a 24-hour urine and am waiting.
He also did a beta 2 microglobulin, which was elevated at 4.2. Can I have such a high beta 2 and have MGUS?
I am trying to read online but am becoming distraught and confused.
So far. I know the following.
All labs normal except IgG, which obviously elevated the total protein.
BMB shows under 10% plasma that stain for the kappa in my blood indicating kappa MGUS.
Beta 2 globulin shows 4.2, which is high and confuses me when I read about it.
No issues on X-rays.
No anemia or other issues.
Can you have beta globulin of 4.2 and it be MGUS?
Thank you. Yes. He did clarify. I have kappa light chain with no spike. The elevation in IgG is polyclonal, which is confusing. Said it could be reactionary, auto immune, inflammation, etc.
I did a 24-hour urine and am waiting.
He also did a beta 2 microglobulin, which was elevated at 4.2. Can I have such a high beta 2 and have MGUS?
I am trying to read online but am becoming distraught and confused.
So far. I know the following.
All labs normal except IgG, which obviously elevated the total protein.
BMB shows under 10% plasma that stain for the kappa in my blood indicating kappa MGUS.
Beta 2 globulin shows 4.2, which is high and confuses me when I read about it.
No issues on X-rays.
No anemia or other issues.
Can you have beta globulin of 4.2 and it be MGUS?
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jrappa - Name: Jason
Re: May have MGUS, have some questions
Jrappa,
Beta2 microglobulin isn't used in the definition of light chain MGUS. It's primarily just used for staging at the time of diagnosis.
Per Dr. Kapoor https://myelomabeacon.org/forum/light-chain-mgus-risk-of-progression-t4751.html , to be diagnosed with light chain MGUS, you must meet the following:
1. The presence of an abnormal free light-chain (FLC) ratio (ie, ratio of kappa to lambda free light chains <0.26 or >1.65)
2. Increased level of the appropriate involved light chain (e.g., increased kappa FLC in patients with a ratio >1.65 and increased lambda FLC in patients with a ratio <0.26)
3. No monoclonal immunoglobulin heavy chain (IgG, IgA, IgD, or IgM)
4. Less than 10 percent clonal lymphoplasmacytic cells in the bone marrow
5. Absence of lytic bone lesions, anemia, hypercalcemia, and renal insufficiency related to the plasma cell disorder.
It sounds like you meet those specific criteria, and your doc is on top of all this and that you are in good hands.
Beta2 microglobulin isn't used in the definition of light chain MGUS. It's primarily just used for staging at the time of diagnosis.
Per Dr. Kapoor https://myelomabeacon.org/forum/light-chain-mgus-risk-of-progression-t4751.html , to be diagnosed with light chain MGUS, you must meet the following:
1. The presence of an abnormal free light-chain (FLC) ratio (ie, ratio of kappa to lambda free light chains <0.26 or >1.65)
2. Increased level of the appropriate involved light chain (e.g., increased kappa FLC in patients with a ratio >1.65 and increased lambda FLC in patients with a ratio <0.26)
3. No monoclonal immunoglobulin heavy chain (IgG, IgA, IgD, or IgM)
4. Less than 10 percent clonal lymphoplasmacytic cells in the bone marrow
5. Absence of lytic bone lesions, anemia, hypercalcemia, and renal insufficiency related to the plasma cell disorder.
It sounds like you meet those specific criteria, and your doc is on top of all this and that you are in good hands.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: May have MGUS, have some questions
Yes. I read it is used to stage multiple myeloma. My question is what is if you can be diagnosed with MGUS with elevated beta 2 of 4.2?
I am confused because I do not know if the elevated beta 2 negates the preliminary diagnosis of MGUS
I am confused because I do not know if the elevated beta 2 negates the preliminary diagnosis of MGUS
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jrappa - Name: Jason
Re: May have MGUS, have some questions
There are specific criteria for making a diagnosis of light chain MGUS (as outlined above), just as there are specific criteria for diagnosing light chain smoldering myeloma and symptomatic light chain multiple myeloma.
Beta-2 microgolubin (B2M) levels are not considered when making a diagnosis of light chain MGUS. In other words, a high B2M doesn't "negate" a diagnosis of light chain MGUS.
My guess is that your doc will likely just ask that you get re-tested every 3-6 months for the next year, and then may reduce that frequency of testing if your MGUS just "drifts along" (like it does with a lot of people).
But I'm not a doc, and you should really discuss this with your doc the next time you see him.
Beta-2 microgolubin (B2M) levels are not considered when making a diagnosis of light chain MGUS. In other words, a high B2M doesn't "negate" a diagnosis of light chain MGUS.
My guess is that your doc will likely just ask that you get re-tested every 3-6 months for the next year, and then may reduce that frequency of testing if your MGUS just "drifts along" (like it does with a lot of people).
But I'm not a doc, and you should really discuss this with your doc the next time you see him.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: May have MGUS, have some questions
Thank you. Just trying to understand as when I googled it I understood that it is bad that it is elevated and I don't know how to put that into context with the diagnosis.
Am I missing anything?
Am I missing anything?
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jrappa - Name: Jason
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