An article in the Beacon last year,
"Myeloma Morning: Bence Jones Protein & Smoldering Multiple Myeloma, Plasma Cell Percentage Measurement, And TJP1," The Myeloma Beacon, May 4, 2016
indicated that the amount of Bence Jones protein in the urine could be a useful sign of how soon a newly diagnosed smoldering myeloma patient is to progress to symptomatic multiple myeloma.
I'm looking for any followup information on this testing and it's prognostic value for we who are smoldering without "CRAB" signs. I have never had test. I will see my oncologist this Monday the 20th and will ask what she thinks of this article, so any input from you would be appreciated.
This article seems to indicate the test can fairly accurately predict time to progression. Not sure I want to know, but if true I will think about it.
I appreciate all info and help I have received from all your comments.
Marti
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Bence Jones protein & smoldering myeloma
Hi Marti,
If you've had a 24-hour urine test, you should have gotten the level of Bence-Jones proteins as one of the results reported from the test. It could have been reported under different names, such as the level of monoclonal protein, paraprotein, monoclonal light chains, urine M-spike, etc.
Have you had a 24-hour urine test anytime recently? If so, if you copy them into a post, there are plenty of folks here who could help you locate the Bence-Jones protein results.
If you've had a 24-hour urine test, you should have gotten the level of Bence-Jones proteins as one of the results reported from the test. It could have been reported under different names, such as the level of monoclonal protein, paraprotein, monoclonal light chains, urine M-spike, etc.
Have you had a 24-hour urine test anytime recently? If so, if you copy them into a post, there are plenty of folks here who could help you locate the Bence-Jones protein results.
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JimNY
Re: Bence Jones protein & smoldering myeloma
I have never had the test.
Marti
Marti
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Bence Jones protein & smoldering myeloma
That's interesting, Marti, I have heard of myeloma specialists not doing regular 24-hour urine testing, but I thought such testing was a standard part of the initial workup in most myeloma patients.
You might want to have the test done at some point. If your smoldering myeloma has been stable for a while and you've been getting regular serum free light chain tests, I suspect you won't learn much that's new from the 24-hour test. But you never know.
Only 18 of the 152 patients in the Spanish study you mentioned had serum free light chain testing done at diagnosis. The study uses data going back to the 1990s, when serum free light chain testing was uncommon. In those 18 patients, the serum free light chain ratio was not a statistically significant predictor of progression to active multiple myeloma, but 18 is a small sample size, so that's not too surprising.
The level of Bence Jones protein was a statistically significant predictor of progression even when the researchers controlled for whether or not the patient met either the Mayo Clinic of Spanish definitions of high-risk smoldering myeloma. That's one reason I think it wouldn't hurt to have a 24-hour urine test done at least once.
You might want to have the test done at some point. If your smoldering myeloma has been stable for a while and you've been getting regular serum free light chain tests, I suspect you won't learn much that's new from the 24-hour test. But you never know.
Only 18 of the 152 patients in the Spanish study you mentioned had serum free light chain testing done at diagnosis. The study uses data going back to the 1990s, when serum free light chain testing was uncommon. In those 18 patients, the serum free light chain ratio was not a statistically significant predictor of progression to active multiple myeloma, but 18 is a small sample size, so that's not too surprising.
The level of Bence Jones protein was a statistically significant predictor of progression even when the researchers controlled for whether or not the patient met either the Mayo Clinic of Spanish definitions of high-risk smoldering myeloma. That's one reason I think it wouldn't hurt to have a 24-hour urine test done at least once.
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JimNY
Re: Bence Jones protein & smoldering myeloma
Hi JimNY,
Thank you for your response. I spoke with my oncologist at UNC-Chapel Hill and she had the same opinion as my Cleveland Clinic doctor that the test was not necessary for me.
I asked for a reason and her response was that as I had no sign of kidney damage there was no need for the test, but if I had kidney damage and Bence Jones testing showed light chains in the urine the it would probably indicate symptomatic multiple myeloma.
For the record, my kappa-lambda ratio has consistently been 8 to 10, and last test my M-spike was 1.4 g/dL (14 g/l). I don't have today's results for either of those yet, but all other results are excellent. My doctor considers me high risk smoldering. I'm just grateful for each healthy day and wish you and all others dealing with this the best.
Thanks again, Marti
Thank you for your response. I spoke with my oncologist at UNC-Chapel Hill and she had the same opinion as my Cleveland Clinic doctor that the test was not necessary for me.
I asked for a reason and her response was that as I had no sign of kidney damage there was no need for the test, but if I had kidney damage and Bence Jones testing showed light chains in the urine the it would probably indicate symptomatic multiple myeloma.
For the record, my kappa-lambda ratio has consistently been 8 to 10, and last test my M-spike was 1.4 g/dL (14 g/l). I don't have today's results for either of those yet, but all other results are excellent. My doctor considers me high risk smoldering. I'm just grateful for each healthy day and wish you and all others dealing with this the best.
Thanks again, Marti
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Bence Jones protein & smoldering myeloma
The cancer center that manages my case always performs a 24-urine / urine protein electrophoresis (UPEP) and, at initial presentation, urine immunofixation electrophoresis (UIFE). One reason I was told that they always perform 24-urine testing on every followup for MGUS, smoldering multiple myeloma, and active multiple myeloma patients is that if Bence Jones protein is found, they more closely monitor renal function (performing such tests as immunoglobulin complements and other renal specific testing other than creatinine, GFR, etc renal labs).
At times after collecting 24 urine samples, maybe 20+ times by now since 2013, I wished they didn't perform such testing, as it is an inconvenience , especially as we must travel 6+ hours bringing the "sample" in an ice chest to be collected the 1st day that we get into town (turned in that evening when also having labs, usually on a Sunday evening).
In my case, additional renal testing was performed, as 2013-2015 my UPEP was clear of measurable Bence Jones protein with a faint peak found in early 2016 and by late fall 2016 17 mg daily Bence Jones protein was detected. This was while my M-spike didn't really rise much (remaining near 0.900 g/dL). The amount of Bence Jones protein increased after not being present years earlier, including in 2010 when my M-spike was 0.100 and first detected (I wasn't tested again until 2013).
While my M-spike has remained mostly stable the past near 2 years, my free light chain ratio increases slightly each few months. It's now at 2.21 as of last week, and it only became abnormally high about a year ago at around 1.8. So my IgG kappa M-spike remains the same, but the kappa free light chain level increases as the lambda level decreases, resulting in slowly but surely climbing free light chain ratio. All the while an increased amount of free light chains passing thru the kidneys results in the measurable Bence Jones protein excretion, which makes up around 10% of my total urine protein (it should be zero normally, of course). Also, the Bence Jones protein displaces the healthy albumin %, while globulin % in urine is also higher than usual.
I guess there must be some value to have the breakdown of Bence Jones protein, albumin, globulin % that are found in the 24-hour urine testing and increased Bence Jones protein. In my case, with Bence Jones protein appearing suddenly at an increased level with not much other change, if the level increases to 200 mg excreted daily and my creatinine keeps rising / GFR lowering, it was noted that a renal biopsy would be prudent.
Also regular even dipstick urine testing indicates a small amount of normal proteinuria. So all in all though I don't have diabetes or high blood pressure my proteinuria is a little annoying to say the least. Also, there's always blood present in my urine during spot analysis testing, which is unaccounted for.
I hope that even though I'm not too worried about my high risk MGUS / smoldering multiple myeloma becoming active as my M-spike has been near the same for a while now, I do wonder at times if the Bence Jones protein is harming my kidneys and wondering why lately the Bence Jones proteins are not being absorbed and "leaking," which could over time harm kidney tubules (light chain deposition).
Anyway, I saw the 24-hour urine testing and Bence Jones protein noted in this topic and thought to throw in this bit of info (that the center managing my case always performs 24-hour urine testing).
At times after collecting 24 urine samples, maybe 20+ times by now since 2013, I wished they didn't perform such testing, as it is an inconvenience , especially as we must travel 6+ hours bringing the "sample" in an ice chest to be collected the 1st day that we get into town (turned in that evening when also having labs, usually on a Sunday evening).
In my case, additional renal testing was performed, as 2013-2015 my UPEP was clear of measurable Bence Jones protein with a faint peak found in early 2016 and by late fall 2016 17 mg daily Bence Jones protein was detected. This was while my M-spike didn't really rise much (remaining near 0.900 g/dL). The amount of Bence Jones protein increased after not being present years earlier, including in 2010 when my M-spike was 0.100 and first detected (I wasn't tested again until 2013).
While my M-spike has remained mostly stable the past near 2 years, my free light chain ratio increases slightly each few months. It's now at 2.21 as of last week, and it only became abnormally high about a year ago at around 1.8. So my IgG kappa M-spike remains the same, but the kappa free light chain level increases as the lambda level decreases, resulting in slowly but surely climbing free light chain ratio. All the while an increased amount of free light chains passing thru the kidneys results in the measurable Bence Jones protein excretion, which makes up around 10% of my total urine protein (it should be zero normally, of course). Also, the Bence Jones protein displaces the healthy albumin %, while globulin % in urine is also higher than usual.
I guess there must be some value to have the breakdown of Bence Jones protein, albumin, globulin % that are found in the 24-hour urine testing and increased Bence Jones protein. In my case, with Bence Jones protein appearing suddenly at an increased level with not much other change, if the level increases to 200 mg excreted daily and my creatinine keeps rising / GFR lowering, it was noted that a renal biopsy would be prudent.
Also regular even dipstick urine testing indicates a small amount of normal proteinuria. So all in all though I don't have diabetes or high blood pressure my proteinuria is a little annoying to say the least. Also, there's always blood present in my urine during spot analysis testing, which is unaccounted for.
I hope that even though I'm not too worried about my high risk MGUS / smoldering multiple myeloma becoming active as my M-spike has been near the same for a while now, I do wonder at times if the Bence Jones protein is harming my kidneys and wondering why lately the Bence Jones proteins are not being absorbed and "leaking," which could over time harm kidney tubules (light chain deposition).
Anyway, I saw the 24-hour urine testing and Bence Jones protein noted in this topic and thought to throw in this bit of info (that the center managing my case always performs 24-hour urine testing).
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Bence Jones protein & smoldering myeloma
For what it's worth, my Bence Jones protein level remains constant. It first appeared in approximately the fall of 2016 via urine protein electrophoresis( UPEP) at around 20 mg per day excreted. Overall proteinuria also remains at around 200 mg (24-hour urine).
My IgG kappa serum M-spike is up and down each 6 months between 0.800 g/dL to 0.900 g/dL, which is pretty stable for over a year and not much different from when the Bence Jones protein began to appear on each semiannual UPEP.
One thing that did increase as the Bence Jones protein initially appeared and remains "rising" as Bence Jones protein remains present each UPEP is my serum free light chain ratio keeps increasing each time I have blood work. The kappa free light chain level rises a bit as the lambda goes down slightly, overall making for a rising free light chain ratio each few months.
Bilateral bone marrow biopsy results are pretty much the same. My initial biopsy in 2013 and through each since then has ranged between perhaps 7% to 10% plasma cells (clot specimen via immunochemistry).
Immunoparesis remains constant with very low IgM for over 2 years
Short recap:
After a few years of regular UPEP's , Bence Jones protein appeared in a measurable amount over a year ago and nearly at that same time my serum free light chain ratio became abnormal. Serum protein electrophoresis (SPEP) remains near the same even though Bence Jones protein appeared and my serum free light chain ratio continues to increase.
It's been almost 8 years since a small M-spike of 0.0100 g/dL was first noted and since then I continue to sit at (since 2014) high-risk MGUS / smoldering multiple myeloma (based on 10% bone marrow plasma cell percentage) . Hopefully the more recent free light chain ratio changes (abnormal and rising just a little each workup) and Bence Jones protein don't cause any issues and are not a sign of progression. I'm not worried as all renal lab test results are OK these days and outside of a 6-month staph infection I've had nothing odd take place, so I only check in here every few months, Thankfully all is well.
My IgG kappa serum M-spike is up and down each 6 months between 0.800 g/dL to 0.900 g/dL, which is pretty stable for over a year and not much different from when the Bence Jones protein began to appear on each semiannual UPEP.
One thing that did increase as the Bence Jones protein initially appeared and remains "rising" as Bence Jones protein remains present each UPEP is my serum free light chain ratio keeps increasing each time I have blood work. The kappa free light chain level rises a bit as the lambda goes down slightly, overall making for a rising free light chain ratio each few months.
Bilateral bone marrow biopsy results are pretty much the same. My initial biopsy in 2013 and through each since then has ranged between perhaps 7% to 10% plasma cells (clot specimen via immunochemistry).
Immunoparesis remains constant with very low IgM for over 2 years
Short recap:
After a few years of regular UPEP's , Bence Jones protein appeared in a measurable amount over a year ago and nearly at that same time my serum free light chain ratio became abnormal. Serum protein electrophoresis (SPEP) remains near the same even though Bence Jones protein appeared and my serum free light chain ratio continues to increase.
It's been almost 8 years since a small M-spike of 0.0100 g/dL was first noted and since then I continue to sit at (since 2014) high-risk MGUS / smoldering multiple myeloma (based on 10% bone marrow plasma cell percentage) . Hopefully the more recent free light chain ratio changes (abnormal and rising just a little each workup) and Bence Jones protein don't cause any issues and are not a sign of progression. I'm not worried as all renal lab test results are OK these days and outside of a 6-month staph infection I've had nothing odd take place, so I only check in here every few months, Thankfully all is well.
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
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