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

Confused about lab results - told I have MGUS

by bri55 on Mon Jan 19, 2015 2:12 pm

Hello, first let me say that this is a wonderfully helpful site!

Here is my question: I have been told I am MGUS based on the following lab results:

Serum gamma globulin eletrophoresis 2.4g/dl
Immunofixation electrophoresis, serum IgG Lambda
Immunoglobulins IgG 3060 mg/dl


All other labs normal. Skeletal survey (x-ray) normal though I continue to have hip pain.

The doctor just emailed me that the bone marrow showed no myeloma or MGUS. She did not provide any other information from the report.

I thought MGUS was based on the labs first taken, not on the biopsy (which I don't have a complete report on). She has not been very cooperative.

Any thoughts would be appreciated.

bri55

Re: Confused about lab results - told I have MGUS

by Multibilly on Mon Jan 19, 2015 2:30 pm

bri55,

A diagnosis of MGUS is based on the results of BOTH your various serum/urine tests, as well as the results of the bone marrow biopsy. But your doctor may have given you a preliminary diagnosis of MGUS as he/she awaited the results of the bone marrow biopsy to confirm that initial diagnosis.

The key finding in a bone marrow biopsy from a diagnosis perspective is the plasma cell percentage. If that plasma cell percentage is less than 10%, and one has an M-spike (aka monoclonal protein, paraprotein level, etc.) that is less than 3 g/dL, etc, and one has no CRAB-I issues, one generally gets a diagnosis of MGUS.

To make this more clear, see Table 1 in the following handbook:

http://myeloma.org/pdfs/Patient%20Handbook.pdf

Note that there are also some other new criteria that are used for the diagnosis of symptomatic multiple myeloma that can be found here:

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," Oct 26, 2014.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Confused about lab results - told I have MGUS

by bri55 on Mon Jan 19, 2015 7:31 pm

Thanks for the information.

I am still unsure if I would still be considered MGUS or do I need the bone marrow percentage if any?

I was under the impression that many times MGUS IS diagnosed based on the labs and a biopsy is not always performed at the time, but later if numbers change with an increase in lab values. Therefore done early based on the provider preferred work-up.

bri55

Re: Confused about lab results - told I have MGUS

by Multibilly on Tue Jan 20, 2015 12:06 am

Well, from your earlier post, it very much sounds like you had a bone marrow biopsy, right? You said "The doctor just emailed me that the bone marrow showed no myeloma or MGUS".

If they did a bone marrow biopsy, then they most certainly measured the plasma cell percentage numbers. So, the data exists and you simply need to get it. Note that lab reports are YOUR property and your doctor really should be taking the time to explain the findings. If your doctor won't take the time to explain lab reports to you, I might suggest finding a different doctor.

Now, having said all this, you are correct that some patients with MGUS don't get an initial bone marrow biopsy and are diagnosed purely on their serum tests alone. But, since you had the bone marrow biopsy test done, you really should be given the key data from that test (and have it explained to you), if only to have your baseline numbers for future reference.

Your numbers aren't high, but they also aren't exceptionally low. In fact, your numbers are about the same as my numbers, and I was diagnosed as having smoldering multiple myeloma instead of MGUS based purely on my plasma cell percentage being at 11%.

Is your doctor a multiple myeloma specialist who focuses solely on multiple myeloma? Or is he / she somebody who treats a wide variety of cancers? Even with MGUS, it is important to see a multiple myeloma specialist at least once when you first get diagnosed.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Confused about lab results - told I have MGUS

by bri55 on Tue Jan 20, 2015 2:12 am

I have requested my records and plan to move on, but I have Kaiser so I really need to change insurance if I want to see a multiple myeloma specialist. I can at least get a consult with one, private pay. I don't live far from UCLA and Dr. Berenson in Los Angeles.

Thanks again for your reply.

bri55

Re: Confused about lab results - told I have MGUS

by bri55 on Tue Jan 20, 2015 2:24 am

One last comment on what I was told: The oncologist told me before the biopsy that, if I didn't have significant results, she was "done" with me -- that she only treated blood disorders. I asked what would I do and she said "I don't know, see your PCP, maybe rheumatology." (I do have Sjorgen's, but no rheumatoid arthritis.)

Therefore, to me it sounds like she doesn't think much of a diagnosis of MGUS and that is why she wrote not myeloma or MGUS.

Sorry for going on, but this is leaving me very frustrated.

bri55

Re: Confused about lab results - told I have MGUS

by Dr. Jonathan Kaufman on Tue Jan 20, 2015 8:54 am

bri55,

Multibilly is correct about the definition of MGUS requiring more than just lab work. I recommend doing a bone marrow biopsy in most patients with a new monoclonal protein (gammopathy). It appears that you have a new monoclonal protein, IgG lambda. The situations where a doctor may not do a biopsy are

  1. When the monoclonal protein is very low, or
  2. The doctor doesn't really believe the protein is there (this is a relatively rare circumstance).
Again, I almost always recommend a biopsy. The bone marrow biopsy provides information about the percentage of plasma cells and it can also give information about other more rare plasma cell disorders.

Are you able to provide more of your labs? You listed the serum gamma globulin but not the para­protein. Are you able to find the paraprotein ("M-spike", "monoclonal protein") on your lab report?

I'm sorry you are frustrated. Hopefully we can help you out.

Jlk

Dr. Jonathan Kaufman
Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor

Re: Confused about lab results - told I have MGUS

by bri55 on Tue Jan 20, 2015 12:43 pm

Thank you for your reply. I don't see any additional info that refers to a para protein. Is it possible it was not measured or that it was not detected, therefore not reported? Should the biopsy report it? Thanks for your thoughts.

bri55

Re: Confused about lab results - told I have MGUS

by Multibilly on Tue Jan 20, 2015 12:57 pm

Bri55,

The SPEP would likely indicate that no paraprotein could be measured - especially if the immunofixation (IFE) test said there was some present. I'm also thinking that it is very likely you have some sort of an M-spike (paraprotein level), given your IgG level. Are you looking at an online summary of your lab results? These often omit the M-spike.

As always, I'm not a doc, so please check with yours.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Confused about lab results - told I have MGUS

by bri55 on Tue Jan 20, 2015 6:14 pm

Here are biopsy results:

Bone Marrow Aspirate Smears: Adequate marrow particles are present. There is progressive maturation in myeloid and erythroid lineages. There is no evidence of significant dysplastic changes.

Flow Cytometric Analysis: The flow cytometric analysis was performed with the following panel (cell viability, 93%; lymphoid gate, 14%): CD20, CD19, kappa, lambda, CD3, CD5, CD10, CD23, CD4 and CD8. The flow cytometric analysis shows no evidence of monoclonality in B-cell population. IHC was ordered after reviewing the flow result to rule out subtle marrow interstitial infiltrates (see below).

Bone Marrow Core and Clot Sections: Cellularity is 40% with trilineage hematopoiesis. There is progressive maturation in myeloid and erythroid lineages. Stains for CD20, CD138 and light chains show scattered B and plasma cells (3-5%) with no definite evidence of light chain restriction.

Here is the Interpretation:

Interpretation
Bone Marrow Smears and Sections:

1. Normocellular marrow with trilenage hematopoiesis
2. No morphologic evidence of lymphoma / myeloma
3. Storage iron present per iron stain
4. Flow cytometry: No evidence of monoclonality in B-cell population

Does this mean I have nothing wrong?

bri55

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