I just received a diagnosis of MGUS. I'm relieved it's not myeloma, but I was hoping I didn't have anything wrong at all. Isn't MGUS related to myeloma? So what can I expect? Treatments? Watching and wait for me to go downhill?
I do not see the oncologist again until the beginning of July. That will put me at 90 days since I first starting going in for blood work.
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MrsM - Name: Mrs M
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 39
Re: Just diagnosed with MGUS
MrsM,
It sounded like from your other tests that you had no serum M-spike, but you were spilling some protein into your urine. What additional tests led the doctor to say you have MGUS? Did the doc run a serum free light chain assay (Freelite assay) and do you know those results?
But assuming it is indeed MGUS, the thing you need to remember with MGUS is that the risk of it progressing to symptomatic multiple myeloma is only 1%/year. Those are very good odds. You would certainly not get treated and you very likely may never need to. Many people go through life and never even know they had MGUS. You would likely only get re-tested every 6 months to a year after you have another round of testing.
It sounded like from your other tests that you had no serum M-spike, but you were spilling some protein into your urine. What additional tests led the doctor to say you have MGUS? Did the doc run a serum free light chain assay (Freelite assay) and do you know those results?
But assuming it is indeed MGUS, the thing you need to remember with MGUS is that the risk of it progressing to symptomatic multiple myeloma is only 1%/year. Those are very good odds. You would certainly not get treated and you very likely may never need to. Many people go through life and never even know they had MGUS. You would likely only get re-tested every 6 months to a year after you have another round of testing.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS
Yes, I think i have had that test. It said kappa free light chains detected, but it did not give a level of high much. So it must be a very small amount. No Bence Jones protein though. It also said I have hypergammaglobulinemia and also have essential thrombocythemia.
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MrsM - Name: Mrs M
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 39
Re: Just diagnosed with MGUS
MrsM,
What you describe doesn't sound like the results of a serum free light chain assay, since that test will always return a measurable set of exact figures of one's kappa and lambda free light chain levels.
Regardless of your test results, I might suggest seeking out a second opinion from a top myeloma specialist at some time in the near future. If you let us know what city you are in, folks on this forum can make some recommendations as to where to find one.
What you describe doesn't sound like the results of a serum free light chain assay, since that test will always return a measurable set of exact figures of one's kappa and lambda free light chain levels.
Regardless of your test results, I might suggest seeking out a second opinion from a top myeloma specialist at some time in the near future. If you let us know what city you are in, folks on this forum can make some recommendations as to where to find one.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS
My doctor told me I have MGUS. The cancer institute I go to uses "See your chart". There is a copy of the graph but no measurable levels listed on it. I noticed that the institute does not always list complete test results on the website. I have had xrays that are not listed either and a CT that is not listed either.
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MrsM - Name: Mrs M
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 39
Re: Just diagnosed with MGUS
MrsM,
These test pictures are electrophoresis graphs. Understand that these are different tests from the serum Freelite assay test, which measures just the serum levels of your kappa and lambda free light chains. I know all this is quite confusing to get your head around all these different tests used for diagnosing a monoclonal gammopathy.
Your doctor should have run the Freelite assay test, especially if you have no measurable M-spike. That test would list values for lambda, kappa and the kappa / lambda ratio.
I'm not a doc, but I'm not quite sure how your doctor provided you with a diagnosis of MGUS with no measurable M-spike, if he had not also run the Freelite assay test or had seen the results of a bone marrow biopsy. Can't you reach him / her directly to ask for more details on why your were diagnosed as such?
Note that I've never had a radiology report posted on my online lab web page. I always have to request a copy of that report from my specialist and / or the radiological facility that performed the imaging.
These test pictures are electrophoresis graphs. Understand that these are different tests from the serum Freelite assay test, which measures just the serum levels of your kappa and lambda free light chains. I know all this is quite confusing to get your head around all these different tests used for diagnosing a monoclonal gammopathy.
Your doctor should have run the Freelite assay test, especially if you have no measurable M-spike. That test would list values for lambda, kappa and the kappa / lambda ratio.
I'm not a doc, but I'm not quite sure how your doctor provided you with a diagnosis of MGUS with no measurable M-spike, if he had not also run the Freelite assay test or had seen the results of a bone marrow biopsy. Can't you reach him / her directly to ask for more details on why your were diagnosed as such?
Note that I've never had a radiology report posted on my online lab web page. I always have to request a copy of that report from my specialist and / or the radiological facility that performed the imaging.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
6 posts
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