Hi,
In 2013, my dermatologist (had a skin rash) told me I had leukaemia. However, my GP reviewed my results and told me that I am fine and that my results were misinterpreted. I was just happy that nothing was wrong with me and left it there.
In 2015, I really got worried as I could never understand what was the original concern that the dermatologist picked up. So I requested my medical records and made an appointment with a haematologist. After some blood tests, urine test, and xrays, I was told that I have low risk IgM MGUS and that I need to be monitored on a six monthly basis.
After my first six monthly check, my spike increased from 1 g/L (0.1 g/dL) to 2 g/L (0.2 g/dL).
Albumin 45 45 g/L (35-50)
Alpha 1 3 3 g/L (2-4)
Alpha 2 5 6 g/L (4-9)
Beta 1 4 5 g/L (2-6)
Beta 2 3 3 g/L (2-6)
Gamma 8 10 g/L (6-15)
Abnormal Band 1 Abn Band* IgM K *
Quantitation 1 1 H 2 H g/L (<0.1)
Protein 69 73 g/L (63-80)
Immunofixation IgM K* IgM K *
IgG 9.26 g/L (5.76-15.36)
IgA 1.70 1.47 1.81 g/L (1.24-4.16)
IgM 2.05 g/L (0.48-3.1)
Kappa FLC 11 13 mg/L (<22)
Lambda FLC 12 17 mg/L (<27)
K/L Ratio 0.92 0.76 (0.31-1.56)
There is no evidence of abnormal production of free light chains and my x-rays also showed nothing of concern
Sodium 139 140 140 140 mmol/L (135-145)
Potassium 4.6 4.2 4.4 4.0 mmol/L (3.5-5.5)
Chloride 103 101 106 107 mmol/L (95-110)
Bicarbonate 29 28 26 22 mmol/L (20-32)
Anion Gap 7 11 8 11 mmol/L (5-15)
Ca (corr) 2.25 2.34 2.45 2.39 mmol/L (2.10-2.55)
Phosphate 1.2 1.2 1.1 0.7 L mmol/L (0.8-1.5)
Urea 4.2 5.8 6.6 5.0 mmol/L (3.0-8.0)
Urate 0.36 0.32 0.37 0.39 mmol/L (0.20-0.50)
Creatinine 104 105 85 91 umol/L (60-110)
eGFR 72 71 >90 >90 (>59)
Fast. Glucose 5.6 5.2 5.5 mmol/L (3.6-6.0)
Rand. Glucose 5.1 mmol/L (3.6-7.7)
Total Protein 71 69 68 69 g/L (66-83)
Albumin 46 45 42 45 g/L (39-50)
Globulin 25 24 26 24 g/L (20-39)
T Bilirubin 32 H 27 H 23 H 32 H umol/L (4-20)
C Bilirubin 7 umol/L (0-7)
ALP 66 57 60 59 U/L (35-110)
AST 18 19 24 20 U/L (10-40)
ALT 28 27 45 H 26 U/L (5-40)
GGT 20 26 38 23 U/L (5-50)
LDH 148 151 154 157 U/L (120-250)
Cholesterol 4.9 5.1 5.4 5.3 mmol/L (3.9-5.5)
Triglyceride 0.9 1.2 1.7 mmol/L (0.6-2.0)
Iron 19 umol/L (5-30)
Haemolysis
Index 4 4 5 (0-40)
Any words of wisdom if I should be worried?
I am not sure why they wish to monitor me as the doctor told me there is no benefit in early treatment should they pick up something.
Forums
6 posts
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: IgM MGUS - why monitor every 6 months?
Welcome to the forum, Aussie.
As you've probably already figured out, your M-spike is VERY low. M-spike fluctuations of 0.1 or 0.2 g/dL (1 or 2 g/L), for example, fall within the range of what many would consider measurement error.
Your immunofixation test, however, has twice confirmed that you do, in fact, have monoclonal protein present in your blood, so the M-spike measurements are not an error. But the monoclonal protein levels are very low.
Also, your free light chain levels in your blood are within the normal range, as is the free light chain ratio. Those are positive signs, as well.
The reason the doctor wants to monitor you every 6 months is probably to make sure that your disease is not progressing to something more serious, such as multiple myeloma or, in the case of IgM MGUS, Waldenstroms macroglobulinemia or amyloidosis. If progression is occurring, it is better to know about it sooner rather than later, as the organ damage that can occur with progression can complicate treatment and negatively affect a patient's long-term prognosis.
All that having been said, the average risk of progression in MGUS patients is only 1-1.5 percent per year. Given your low M-spike and within-range free light chain levels, I'd say your own personal risk of progression is probably lower than the average.
It's not something you need to do right away, but you may want to consider having a bone marrow biopsy done at some point, to pin down what your bone marrow plasma cell percentage is, and perhaps have some genetic testing done on the bone marrow cells to determine what sort of abnormalities may be present. Both sets of information could give you and your doctor a better picture of what your risk of progression is going forward.
Good luck!
As you've probably already figured out, your M-spike is VERY low. M-spike fluctuations of 0.1 or 0.2 g/dL (1 or 2 g/L), for example, fall within the range of what many would consider measurement error.
Your immunofixation test, however, has twice confirmed that you do, in fact, have monoclonal protein present in your blood, so the M-spike measurements are not an error. But the monoclonal protein levels are very low.
Also, your free light chain levels in your blood are within the normal range, as is the free light chain ratio. Those are positive signs, as well.
The reason the doctor wants to monitor you every 6 months is probably to make sure that your disease is not progressing to something more serious, such as multiple myeloma or, in the case of IgM MGUS, Waldenstroms macroglobulinemia or amyloidosis. If progression is occurring, it is better to know about it sooner rather than later, as the organ damage that can occur with progression can complicate treatment and negatively affect a patient's long-term prognosis.
All that having been said, the average risk of progression in MGUS patients is only 1-1.5 percent per year. Given your low M-spike and within-range free light chain levels, I'd say your own personal risk of progression is probably lower than the average.
It's not something you need to do right away, but you may want to consider having a bone marrow biopsy done at some point, to pin down what your bone marrow plasma cell percentage is, and perhaps have some genetic testing done on the bone marrow cells to determine what sort of abnormalities may be present. Both sets of information could give you and your doctor a better picture of what your risk of progression is going forward.
Good luck!
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JimNY
Re: IgM MGUS - why monitor every 6 months?
Thank you.
Do you have any suggestions of what I should ask the doctor to obtain a better understanding of my condition?
Sorry for the silly questions, but my doctors recommended that I do not do too much research on the Internet, as I may misinterpret the subject matter and then get unnecessarily worried.
This forum appears to be a place where most people are well informed.
Do you have any suggestions of what I should ask the doctor to obtain a better understanding of my condition?
Sorry for the silly questions, but my doctors recommended that I do not do too much research on the Internet, as I may misinterpret the subject matter and then get unnecessarily worried.
This forum appears to be a place where most people are well informed.
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: IgM MGUS - why monitor every 6 months?
Hi Aussie,
As Jim mentioned, your numbers are quite low, which is great news. However, the IgM form of MGUS is pretty rare and can sometimes indicate another underlying condition such as amyloidosis or Waldenstrom's Macroglobulinemia. It's therefore important that you have your lab workups analyzed by a multiple myeloma specialist to rule out any early stages of these other conditions. Some of the tests that Jim mentioned would be good ones to start with.
Also, like Jim said, getting all these tests reviewed and/or performed is not something you need to do right away, but it may make sense to get these additional tests done at some point - and under the guidance of a really good multiple myeloma specialist.
As Jim mentioned, your numbers are quite low, which is great news. However, the IgM form of MGUS is pretty rare and can sometimes indicate another underlying condition such as amyloidosis or Waldenstrom's Macroglobulinemia. It's therefore important that you have your lab workups analyzed by a multiple myeloma specialist to rule out any early stages of these other conditions. Some of the tests that Jim mentioned would be good ones to start with.
Also, like Jim said, getting all these tests reviewed and/or performed is not something you need to do right away, but it may make sense to get these additional tests done at some point - and under the guidance of a really good multiple myeloma specialist.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: IgM MGUS - why monitor every 6 months?
Thanks for all the feedback provided. I have taken your advice and have:
1. Bone marrow biopsy – results came back clear
2. I am now with a MGUS / myeloma specialist – I will continue to see him every six months.
Subsequently I have been diagnosed with lymphocytic vasculitis (a skin rash). The word "lymphocytic" just totally freaked me out, but the dermatologist did a whole bunch of blood tests and told me not to worry.
As many of you are not medical professionals, I do not anticipate a response to the new lymphocytic vasculitis, but I would rather like to know how do you go about your life knowing you have MGUS.
My GP told me to think of MGUS as any other disease (e.g. diabetes, high cholesterol and etc). There is no way that any doctor can accurately predict what may or may not happened and that all humans have some kind of disease.
Is it just as simple as that?
1. Bone marrow biopsy – results came back clear
2. I am now with a MGUS / myeloma specialist – I will continue to see him every six months.
Subsequently I have been diagnosed with lymphocytic vasculitis (a skin rash). The word "lymphocytic" just totally freaked me out, but the dermatologist did a whole bunch of blood tests and told me not to worry.
As many of you are not medical professionals, I do not anticipate a response to the new lymphocytic vasculitis, but I would rather like to know how do you go about your life knowing you have MGUS.
My GP told me to think of MGUS as any other disease (e.g. diabetes, high cholesterol and etc). There is no way that any doctor can accurately predict what may or may not happened and that all humans have some kind of disease.
Is it just as simple as that?
-
Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: IgM MGUS - why monitor every 6 months?
Hello Aussie,
I came to this forum since I have an IgG problem as well as a more well defined IgM issue. The IgM is a straightforward Waldenstrom's macroglobulinemia diagnosis with no physical symptoms so I can watch and wait even though it has progressed beyond IgM MGUS by definition.
From what I have read, you are much more likely to progress to Waldenstrom's some day, and not multiple myeloma, given your IgM immunofixation, and suggest that your hematologist look into the literature related to Waldenstrom's. For Waldenstrom's, the IgM numbers do slowly increase over time, but it seems to be more treatable than multiple myeloma.
Best regards,
I came to this forum since I have an IgG problem as well as a more well defined IgM issue. The IgM is a straightforward Waldenstrom's macroglobulinemia diagnosis with no physical symptoms so I can watch and wait even though it has progressed beyond IgM MGUS by definition.
From what I have read, you are much more likely to progress to Waldenstrom's some day, and not multiple myeloma, given your IgM immunofixation, and suggest that your hematologist look into the literature related to Waldenstrom's. For Waldenstrom's, the IgM numbers do slowly increase over time, but it seems to be more treatable than multiple myeloma.
Best regards,
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Foundry738 - Name: Biclonal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2016
- Age at diagnosis: 67
6 posts
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