Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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Profile picture for mikxtr @mikxtr

@mphaddican Why request am IGM score?And what is it it?

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@mikxtr lab results for MGUS, Smoldering Multiple Myeloma or Multiple Myeloma can be complex and you really need to get your physician to explain, but I found this information helpful.
MGUS is a precursor blood disorder to Multiple Myeloma. It’s important to remember, however, that not all MGUS patients will get Multiple Myeloma. Many of us will live long lives without ever progressing. Some of our members have had MGUS for decades. The chance of progression is very low. It’s important to keep things in perspective.
Final point is made by my hem/onc doc all the time. Anxiety is not my friend. I should remember that in the unlikely event my MGUS does progress to multiple myeloma, it is treatable. Medical research has made significant gains. Huzzah! Hope this helps.

RE: Lab results

Understanding Your Lab Results
Multiple myeloma is a cancer of the blood—and the results of blood and other lab tests are important for diagnosing and monitoring multiple myeloma.

Your doctor or nurse will need to test your blood or urine on a regular schedule to see exactly how multiple myeloma affects you. These lab tests will help tell your doctor or nurse if your multiple myeloma is under control.
Below is a list of lab tests that are commonly used to keep an eye on multiple myeloma. Use the chart to help you better understand your results. Many of these terms and tests may be unfamiliar—you can read more about them in the glossary.
As you review these charts, please remember that “normal” ranges may vary slightly from lab to lab. Always rely on your doctor for a full explanation of what your results may mean.
LABORATORY ASSESSMENT
Serum Protein Electrophoresis

Protein
Normal rangea
6-8 g/dL
Albumin
3.3-5.7 g/dL
α1-Globulin
0.1-0.4 g/dL
α2-Globulin
0.3-0.9 g/dL
β-Globulin
0.7-1.5 g/dL
γ-Globulin
0.5-1.4 g/dL
Immunoglobulin, Serum

IgA
Normal rangea
61-356 mg/dL
IgG
76 7- 15 90 mg/dL
IgM
37-286 mg/dL
Chemistry Profile
Blood urea nitrogen (BUN)
Normal rangea7-20 mg/dL
Creatinine
Normal rangea0.6-1.3 mg/dL
Calcium
Normal rangea9-10.5 mg/dL
Creatinine clearance
Normal rangea
Males: 97-137 mL/min
Females: 88-128 mL/min
Glucose, fasting
Normal rangea70-100 mg/dL
Lactate dehydrogenase (LDH)
Normal rangea105-333 IU/L
Estimated glomerular filtration rate (eGFR)
Normal rangea
90-120 mL/min/1.73 m2
Serum-Free Light Chains
Free kappa
Normal rangea3.3-19.4 mg/dL
Free lambda
Normal rangea5.71-26.3 mg/dL
Kappa/lambda ratio
Normal rangea0.26-1.65
β2 -Microglobulin (B2M)
Normal rangea0.70-1.80 mg/dL
Complete Blood Count (CBC) With Differential
White blood cell count (WBC)
Normal rangea3.5-10.5 x 109/L
Red blood cell count (RBC)
Normal rangea
Males: 4.32-5.72 x 1012/L
Females: 3.90-5.03 x 1012/L
Hemoglobin (Hgb)
Normal rangea
Males: 13.5-17.5 g/dL (135-175 g/L)
Females: 12.0-15.5 g/dL (120-155 g/L)
Hematocrit (HCT)
Normal rangea
Males: 38.8%-50.0%
Females: 34.9%-44.5%
Mean corpuscular volume (MCV)
Normal rangea79.0-101.0 fL
Mean corpuscular hemoglobin (MCH)
Normal rangea25.0-35.0 pg
Mean corpuscular hemoglobin concentration (MCHC)
Normal rangea31.0-37.0 g/dL
Red blood cell distribution width (RDW)
Normal rangea11.0%-16.0%
Platelets
Normal rangea150-450 x 109/L
Lymphocytes
Normal rangea24%-44%
Monocytes
Normal rangea1.0%-10.0%
Absolute neutrophil count (ANC)
Normal rangea1.7-7.0 x 109/L
Urine protein electrophoresis
Protein
< 167 mg/24 hours
Albumin
< 5 mg/dL
α1-Globulin
0%
α2-Globulin
0%
β-Globulin
0%
γ-Globulin
0%
aLab values are ranges based on individual labs; values may vary slightly from lab to lab.
Always discuss your test results with your healthcare team and make sure to ask questions to fully understand what they mean.

Does this help? Hugs.

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Profile picture for ems2012 @ems2012

@mphaddican

I’m so sorry to hear that. Both your minds must be full of mixed emotions/anxiety.
I know with MGUS (I can spend hours educating myself) that IgM levels are low (lower than IgG) so anything considered high for that is well concerning. Medical professionals don’t always answer questions (lots of poker faces) …

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@ems2012

Thanks for your response.

Since my husband’s treatments through Dana Farber his IGM levels have been normal for the last 6 years. They did find out that 40% of those with WM have a gene that normal treatment does not work for so they adjusted the infusions with that in consideration for my husband. It worked.
My high praises for medical research and researchers! They have to function in these uncertain times and they seem laser focused! Thanks to all of them! 😀

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Profile picture for mphaddican @mphaddican

Sorry to be so vague. I am not a physician but my husband was diagnosed with MGUS many years ago. He finally made an appointment Dana Farber. His blood test showed an IGM high level and it indicted that he had Walldenstroms. It is very rare .
If the IGM is high it can indicate that. Don’t be afraid I am just throwing that out there. It is rare and some times missed
On a good note he has had infusion treatments over 6 years ago and is doing fine. His level has been normal.
Mayo is very familiar with that disease and has been helpful too.
M

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@mphaddican

I’m so sorry to hear that. Both your minds must be full of mixed emotions/anxiety.
I know with MGUS (I can spend hours educating myself) that IgM levels are low (lower than IgG) so anything considered high for that is well concerning. Medical professionals don’t always answer questions (lots of poker faces) …

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Sorry to be so vague. I am not a physician but my husband was diagnosed with MGUS many years ago. He finally made an appointment Dana Farber. His blood test showed an IGM high level and it indicted that he had Walldenstroms. It is very rare .
If the IGM is high it can indicate that. Don’t be afraid I am just throwing that out there. It is rare and some times missed
On a good note he has had infusion treatments over 6 years ago and is doing fine. His level has been normal.
Mayo is very familiar with that disease and has been helpful too.
M

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Profile picture for mphaddican @mphaddican

My husband was diagnosed with that some years ago. When you have your blood test ask physician to request your IGM score. They can do it with regular blood test but may have to send to another lab.
Just another thought.
M

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@mphaddican Why request am IGM score?And what is it it?

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My husband was diagnosed with that some years ago. When you have your blood test ask physician to request your IGM score. They can do it with regular blood test but may have to send to another lab.
Just another thought.
M

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Anyone else work in area of World Trade Center after the buildings were destroyed and breathe in the debris? If so get registered with the 9/11 victims compensation fund.

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Yes I have MGUS just over a year but when looking back at blood work it first appeared in very minute quantities in 2017. My primary does take good care of me and watches over me in between visits to hemonc.

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Profile picture for planxty7 @planxty7

Patty, thanks for all your responses here. Blood work and hematologist next month where I will ask that same question you posed about what results should be concerning. Great question.

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@planxty7
HI Patty , I have had MGUS diagnosed for a little over a year. Yet looking over my past bloodwork 'and I see areas that were showing before official diagnosis. Actually I am told my blood work appeared in 2017 and only acknowledged last year as MGUS. Some primary docs see a lot of MGUS and some do not worry about it. Hematologist are very active but you have to be your own advocate. Apparently there are many with MGUS. I am showing protein in urine . Oncologist wants a 24 hour urine before my visit in January. I did have a hip collapse ( bone was powder) in my L hip and had a hip replacement. I am also told that people exposed to the World Trade Center disaster have a higher rate of MGUS than just regular people. Actually 40% if I remember the conversation. . I happened to be working in area at the time. And I am registered with the WTC victims compensation organization..And I have MGUS for over a year. So if you were anywhere near the area or have friends in the area let them know to get at least a baseline blood test. My son was right there and scoffs at me for the recommendation. Best of luck.

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Patty, thanks for all your responses here. Blood work and hematologist next month where I will ask that same question you posed about what results should be concerning. Great question.

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