Hello all,
I am a newly diagnosed MGUS person, although I have not yet had a bone marrow biopsy or any skeletal scans. One hematologist said he wouldn't do them on me. My M-spike was 0.9 (IgG kappa), and my free light chain ratio is 2.2 (with lambda at low end and kappa within range).
I had to ask for a urine UPEP test. A random urine showed a "trace" yet detectable amount of an intact IgG paraprotein (monoclonal protein).
Based on the paraprotein in the urine, I am now very concerned that I do need a bone marrow biopsy, so I am going to another clinic with myeloma specialists for a second opinion. (Other CBC stuff seems ok except low WBC but has been trending up and is now within range at very low end.)
I am wondering how common it is to have stable MGUS and also have either light-chain (Bence Jones) or intact paraprotein in the urine. Is it even possible to be considered MGUS and have either Bence Jones or intact paraprotein in the urine?
I am kind of freaking out now and worrying about all sorts of stuff like kidney damage even though my renal function tests show normal function.
Thanks to all and best wishes for continued or improved health to all.
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Re: MGUS with paraprotein in urine: is it a bad sign?
Hi,
So your M-protein is relatively low, and a kappa-lambda ratio of 2.2 is negligible in my opinion (mine was around 30 at my MGUS diagnosis).
I am surprised you did not get at least a crude whole-body x-ray. That procedure, unlike MRI, PET/CT, etc., is cheap.
My initial hematologist was pushing me to do a bone marrow biopsy, which I delayed for a while, but when he did and it showed 20% plasma cells, he ordered MRIs and full-body x-rays right away.
As far as Bence-Jones, I do think it's important. One oncologist I used for 2 visits did not do this test, however.
I think you need 24-hour urine to have any precision on these tests. Was yours 24-hour or spot collection?
In a 24-hour one, I once had something mentioning paraprotein bands, but it was later not confirmed.
Hope it helps. But the only way to see if you have myeloma is to do a bone marrow biopsy, given no other symptoms.
Don't worry too much. Good luck!
So your M-protein is relatively low, and a kappa-lambda ratio of 2.2 is negligible in my opinion (mine was around 30 at my MGUS diagnosis).
I am surprised you did not get at least a crude whole-body x-ray. That procedure, unlike MRI, PET/CT, etc., is cheap.
My initial hematologist was pushing me to do a bone marrow biopsy, which I delayed for a while, but when he did and it showed 20% plasma cells, he ordered MRIs and full-body x-rays right away.
As far as Bence-Jones, I do think it's important. One oncologist I used for 2 visits did not do this test, however.
I think you need 24-hour urine to have any precision on these tests. Was yours 24-hour or spot collection?
In a 24-hour one, I once had something mentioning paraprotein bands, but it was later not confirmed.
Hope it helps. But the only way to see if you have myeloma is to do a bone marrow biopsy, given no other symptoms.
Don't worry too much. Good luck!
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Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: MGUS with paraprotein in urine: is it a bad sign?
Thank you for your reply.
I am going for a second opinion on Friday with a MGUS / myeloma specialist. I am pretty sure they will order a bone marrow biopsy, but who knows.
The urine was spot collection. I am waiting to see if the doctor on Friday wants me to do a 24-hour one.
I am very stressed out. I feel fine. This was found when routine blood work showed low WBC and RBC levels, even though historically, when I reviewed records dating back to 2004, these results were totally consistent. I wish the doc hadn't started digging into this to be honest.
I am going for a second opinion on Friday with a MGUS / myeloma specialist. I am pretty sure they will order a bone marrow biopsy, but who knows.
The urine was spot collection. I am waiting to see if the doctor on Friday wants me to do a 24-hour one.
I am very stressed out. I feel fine. This was found when routine blood work showed low WBC and RBC levels, even though historically, when I reviewed records dating back to 2004, these results were totally consistent. I wish the doc hadn't started digging into this to be honest.
Re: MGUS with paraprotein in urine: is it a bad sign?
Well, the MGUS diagnosis I took lightly, and did not even care about a high kappa-lambda ratio and low IgA and IgM. My thought process was 1% a year risk of MGUS developing into multiple myeloma.
It was only after a bone marrow biopsy and a 20% plasma cell percentage, thus immediate diagnosis, that I was shocked. Plus, my first hematologist was pushing to start treatment very hard, based on one lesion found on the skull by x-ray (that was not confirmed later, and I escaped from treatment with a second opinion and CT scan).
Yes, 24-hour urine is useful to have done.
Good luck!
It was only after a bone marrow biopsy and a 20% plasma cell percentage, thus immediate diagnosis, that I was shocked. Plus, my first hematologist was pushing to start treatment very hard, based on one lesion found on the skull by x-ray (that was not confirmed later, and I escaped from treatment with a second opinion and CT scan).
Yes, 24-hour urine is useful to have done.
Good luck!
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Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
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