Hello,
I am new to this forum, and I am worried about my MGUS. I was diagnosed about three and a half years ago. I have an oncologist with a good reputation that I believe is taking good care of me. However, I need answers to a few questions and I do find him hard to talk to.
I recently had a 24-hour urine protein electrophoresis (UPEP), and he said I do not have Bence Jones protein. However, it clearly states the following:
Protein Fractions Urine
Monoclonal Protein Present 5.8% (estimated concentration}
Suggest urine immunofixation for confirmation and identification.
Albumin 30.7 Relative %
Alpha 1 Globulin 0.0 Relative %
Alpha 2 Globulin 21.3 Relative%
Beta Globulin 24.3 Relative%
Gamma Globulin 23.8 Relative%
A/G Ratio 0.44
Kappa/Lambda W/Calc, 24 hr U Reference Range
Volume 2000
Measured Kappa Chains 1.07 <2.00 mg/dl
Total Kappa Chains 21.40 mg/24 h
Measured Lambda Chains 0.44 <2.00 mg/dl
Total Lambda Chains 8.80 mg/24 hr
Due to individual variations in 24-hour urine volume, no reference
ranges exist for Total Kappa Chains and Total Lambda Chains.
As you can see, no immunofixation was done. I'm going crazy trying to figure out what this monoclonal protein is. Do I have Bence Jones protein or not? Why wasn't immunofixation done? I can't locate my last 24-hour urine so I can't compare.
I do have a pretty fair understanding of all of this. Low serum M-spike 0.46 g/dL and normal K/L ratio, although both kappa and lambda are elevated.
Is there anyone out there that can help me? I'm worried sick.
Sami
Forums
Re: Help understanding my UPEP
Hello Sami,
The fact that you urine protein electrophoresis says that a "monoclonal protein is present" is just a reflection of your MGUS. As you said, you have a serum M-spike (monoclonal protein) of 0.46 g/dL (4.6 g/dL). So it's not surprising that your urine test results are also showing the presence of the same monoclonal protein. In fact, many (but not all) MGUS and myeloma patients are initially diagnosed after a UPEP or urine immunofixation shows signs of a monoclonal protein.
No immunofixation was run based on your urine test results because you and your doctor already know, through your previous M-spike results, that you have a monoclonal protein (M-spike), so an immunofixation test would just confirm what's already known.
Bence-Jones proteins are just another name for monoclonal free light chains found in the urine. There are a couple of key words, however, in that description.
"Monoclonal" is one of them, meaning that they are signs of a plasma disorder. Healthy light chains are polyclonal as opposed to monoclonal.
The other key word is "free" as opposed, say, to total. Immunoglobulins (IgA, IgG, IgM, etc.) are a combination of heavy and light chains. Free light chains are light chains that are not attached to heavy chains. When you measure TOTAL light chains, whether kappa or lambda, you are measuring both FREE light chains and those that are BOUND together with heavy chains in immunoglobulin molecules in your blood or urine. You are also measuring both MONOCLONAL (unhealthy / MGUS- and myeloma-related) and POLYCLONAL (healthy) light chains.
So, as I said, these test results don't really tell you something you don't already know. Moreover, it's really serum protein electrophoresis (SPEP) and free light chain testing that is best for tracking your MGUS and also for tracking myeloma.
I hope this helps clarify things a bit. If you have more questions about your results, you may be able to find answers in this list of related forum discussions.
See, for example, Dr. Libby's reply in this discussion:
"Understanding UPEP results" (started March 6, 2015).
The fact that you urine protein electrophoresis says that a "monoclonal protein is present" is just a reflection of your MGUS. As you said, you have a serum M-spike (monoclonal protein) of 0.46 g/dL (4.6 g/dL). So it's not surprising that your urine test results are also showing the presence of the same monoclonal protein. In fact, many (but not all) MGUS and myeloma patients are initially diagnosed after a UPEP or urine immunofixation shows signs of a monoclonal protein.
No immunofixation was run based on your urine test results because you and your doctor already know, through your previous M-spike results, that you have a monoclonal protein (M-spike), so an immunofixation test would just confirm what's already known.
Bence-Jones proteins are just another name for monoclonal free light chains found in the urine. There are a couple of key words, however, in that description.
"Monoclonal" is one of them, meaning that they are signs of a plasma disorder. Healthy light chains are polyclonal as opposed to monoclonal.
The other key word is "free" as opposed, say, to total. Immunoglobulins (IgA, IgG, IgM, etc.) are a combination of heavy and light chains. Free light chains are light chains that are not attached to heavy chains. When you measure TOTAL light chains, whether kappa or lambda, you are measuring both FREE light chains and those that are BOUND together with heavy chains in immunoglobulin molecules in your blood or urine. You are also measuring both MONOCLONAL (unhealthy / MGUS- and myeloma-related) and POLYCLONAL (healthy) light chains.
So, as I said, these test results don't really tell you something you don't already know. Moreover, it's really serum protein electrophoresis (SPEP) and free light chain testing that is best for tracking your MGUS and also for tracking myeloma.
I hope this helps clarify things a bit. If you have more questions about your results, you may be able to find answers in this list of related forum discussions.
See, for example, Dr. Libby's reply in this discussion:
"Understanding UPEP results" (started March 6, 2015).
Re: Help understanding my UPEP
Hello Cheryl,
First, let me thank you for your quick reply and for trying to help me understand all of this. However, I still have one question: Do I have Bence Jones protein? My doctor clearly stated to one of the girls in the office that he wanted a 24-hour urine for Bence Jones protein quantitative.
I see in my paperwork that it appears that my numbers for both kappa and lambda chains is within normal limits, but I don't understand how it relates to my protein fractions, which clearly are not normal. I'm sorry to ask again, all of this is so confusing.
My doctor said testing for Bence Jones protein is important because it is characteristic of multiple myeloma (which my brother passed away from about 2 1/2 years ago). I feel really stupid asking again, I know I have a monoclonal protein in my urine, but do I have Bence Jones protein.? I've been told that immunofixation is a much more sensitive test for detecting this particular protein.
Just one more thing. Since my paperwork says monoclonal protein present (urine} 5.8%, does that mean I need immunofixation to find out if any of these proteins are Bence Jones? I'm so confused ...
I cant tell you how much I appreciate your reading this. THANK YOU so much for "listening."
First, let me thank you for your quick reply and for trying to help me understand all of this. However, I still have one question: Do I have Bence Jones protein? My doctor clearly stated to one of the girls in the office that he wanted a 24-hour urine for Bence Jones protein quantitative.
I see in my paperwork that it appears that my numbers for both kappa and lambda chains is within normal limits, but I don't understand how it relates to my protein fractions, which clearly are not normal. I'm sorry to ask again, all of this is so confusing.
My doctor said testing for Bence Jones protein is important because it is characteristic of multiple myeloma (which my brother passed away from about 2 1/2 years ago). I feel really stupid asking again, I know I have a monoclonal protein in my urine, but do I have Bence Jones protein.? I've been told that immunofixation is a much more sensitive test for detecting this particular protein.
Just one more thing. Since my paperwork says monoclonal protein present (urine} 5.8%, does that mean I need immunofixation to find out if any of these proteins are Bence Jones? I'm so confused ...
I cant tell you how much I appreciate your reading this. THANK YOU so much for "listening."
Re: Help understanding my UPEP
Hi,
I understand how this can be very confusing. My original hematologist (locally) informed me that it was also a great sign that I did not have a monoclonal protein (Bence Jones protein, BJP) found in my urine (my M spike at the time ranged from 0.100 - 0.375. g/dL) and that another "good" sign was that my uninvolved immunoglobulins were within normal range. Now that a BJP has been detected in my urine and my IgM has dropped quite a bit below the normal level, "they" say it's expected and normal in even MGUS patients (I'm smoldering myeloma, by the way).
So it's a little confusing sometimes when you are told that something is a "good sign" in your early testing and, once that same item, is found, it naturally can make one a little worried which, is why I guess they now say not to worry (probably best if they never mention up front it's a positive sign to not have a BJP, or for healthy immunoglobulins to remain within normal range).
My urine IFE / UPEP findings:
Last year while (to date) my UPEP is clear but a 24-hour urine IFE (immunofixation) indicated:
"free kappa and free lambda light chain proteins are positive for a kappa Bence-Jones"
I could never get a straight answer, but it seems that the BJP is picked up in the IFE but not UPEP, as the BJP amount is small enough for the IFE to detect but not enough for the UPEP to measure. Hopefully the UPEP will remain clear (my blood M spike has nearly doubled to 0.800 g/dL about 1 year ago and has been steady with UPEP still clear).
Hope you have gotten all of your BJP-related info by now and things are fine.
I understand how this can be very confusing. My original hematologist (locally) informed me that it was also a great sign that I did not have a monoclonal protein (Bence Jones protein, BJP) found in my urine (my M spike at the time ranged from 0.100 - 0.375. g/dL) and that another "good" sign was that my uninvolved immunoglobulins were within normal range. Now that a BJP has been detected in my urine and my IgM has dropped quite a bit below the normal level, "they" say it's expected and normal in even MGUS patients (I'm smoldering myeloma, by the way).
So it's a little confusing sometimes when you are told that something is a "good sign" in your early testing and, once that same item, is found, it naturally can make one a little worried which, is why I guess they now say not to worry (probably best if they never mention up front it's a positive sign to not have a BJP, or for healthy immunoglobulins to remain within normal range).

My urine IFE / UPEP findings:
Last year while (to date) my UPEP is clear but a 24-hour urine IFE (immunofixation) indicated:
"free kappa and free lambda light chain proteins are positive for a kappa Bence-Jones"
I could never get a straight answer, but it seems that the BJP is picked up in the IFE but not UPEP, as the BJP amount is small enough for the IFE to detect but not enough for the UPEP to measure. Hopefully the UPEP will remain clear (my blood M spike has nearly doubled to 0.800 g/dL about 1 year ago and has been steady with UPEP still clear).
Hope you have gotten all of your BJP-related info by now and things are fine.
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Help understanding my UPEP
Update for anyone interested in a case of a positive UPEP result after years of previously clear UPEP tests.
As of this month a monoclonal peak has been found in my UPEP where previously my UPEP's were always negative for evidence of a BJP.
I'm still thankfully CRAB free and still I guess on the smoldering myeloma / MGUS border but as my M spike has increased each visit, doubling in the past 1 yr to 0.900 g/dL as shown below it seems as of the "evolving type" and also immunoparesis has developed as well as now the peak found in a UPEP for the 1st time (earlier urine IFE confirmed a kappa BJP).
Hopefully the M spike will finally remain stable and possible IgM rise though it's been low for almost 1 year and each visit my M spike increases.
Falll 2010:
M spike - 0.100 g/dL
UPEP - neg
Other tests not performed, I was never tested again until following up on my own in 2013 after learning of MGUS / myeloma and realizing I should have been followed up in 2010.
June 2013
M spike 0.375 g/dL IgG kappa
UPEP - neg
BMB 5% PC per cancer center reading, 7% per local reading
K/L ratio 0.7
April 2014
M spike 0.400 g/dL
UPEP - neg
BMB 10% PC (91% aberrant)
K/L ratio 0.9
IFE urine - positive for a Bence Jones kappa proteinuria
Late 2014 - Immunoparesis present - IgM dropped into mid 20's as remains to this day
Oct 2015
M spike 0.900 g/dL
UPEP - Peak found in gamma region
BMB - not performed but possibly the 10% level of plasma cells may have increased
with the 2x M spike increase since the previous BMB?
K/L ratio 1.3
Also UPEP this month: Globulin is below normal and Globulin high
Note also that for every 24 urine result I have had excessive protein in general (200 mg average) since 2010. Doctor's do not seem concerned about the continuous above levels of protein in urine or perhaps there's nothing that can be done about it. Hopefully it doesn't cause an issue over the years even if the M protein ceases to evolve.
As of this month a monoclonal peak has been found in my UPEP where previously my UPEP's were always negative for evidence of a BJP.
I'm still thankfully CRAB free and still I guess on the smoldering myeloma / MGUS border but as my M spike has increased each visit, doubling in the past 1 yr to 0.900 g/dL as shown below it seems as of the "evolving type" and also immunoparesis has developed as well as now the peak found in a UPEP for the 1st time (earlier urine IFE confirmed a kappa BJP).
Hopefully the M spike will finally remain stable and possible IgM rise though it's been low for almost 1 year and each visit my M spike increases.
Falll 2010:
M spike - 0.100 g/dL
UPEP - neg
Other tests not performed, I was never tested again until following up on my own in 2013 after learning of MGUS / myeloma and realizing I should have been followed up in 2010.
June 2013
M spike 0.375 g/dL IgG kappa
UPEP - neg
BMB 5% PC per cancer center reading, 7% per local reading
K/L ratio 0.7
April 2014
M spike 0.400 g/dL
UPEP - neg
BMB 10% PC (91% aberrant)
K/L ratio 0.9
IFE urine - positive for a Bence Jones kappa proteinuria
Late 2014 - Immunoparesis present - IgM dropped into mid 20's as remains to this day
Oct 2015
M spike 0.900 g/dL
UPEP - Peak found in gamma region
BMB - not performed but possibly the 10% level of plasma cells may have increased
with the 2x M spike increase since the previous BMB?
K/L ratio 1.3
Also UPEP this month: Globulin is below normal and Globulin high
Note also that for every 24 urine result I have had excessive protein in general (200 mg average) since 2010. Doctor's do not seem concerned about the continuous above levels of protein in urine or perhaps there's nothing that can be done about it. Hopefully it doesn't cause an issue over the years even if the M protein ceases to evolve.
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Help understanding my UPEP
Hi Pinball,
Thanks for posting your update. I, too, find interpreting all of the various tests (& the variety found in the measurements & reporting styles) very confusing (& often overwhelming).
I'm one of those rare folks - 15-20% with the Light Chain involvement only. A faint band was discovered in my urine way back in 1998 when I had a series of tests that eventually diagnosed me with Multiple Sclerosis. In 2002, my urine tests showed a moderate band, and along with other test results (serum, urine, sf, biopsies) & clinical findings, led to me being diagnosed with MGUS. It's already complicated & confusing for a patient to understand all the different tests & values & interpretations - so it gets even more challenging when someone like me falls outside the norm. And, as time goes on, the tests & values themselves often change, making it more difficult for all of us to compare years of historical test results to one another & to more recent test results in hopes of deciphering trends/abnormalities/changes. Even various doctors I've had have confessed to being confused - so if the doctors are confused, I think it's *really* understandable for us-MGUS-ers to be confused!
Do you feel confident in your current doctor? Are you able to have the discussions with your doctor that give you the answers & explanations you need in order to fully understand your MGUS status? Not just the results from your latest batch of testing, but how your latest test results compare/contrast with all of your previous test results? I was not, and so I now have a new initial visit/consultation scheduled with a different doctor, who came highly recommend by my immunologist, and I'm hoping for a much better "partnership." Since I'm lucky enough to live just outside of Houston (with the great medical center), I've also enrolled at MD Anderson and will have an entrance interview - or something like that, I forget what they called it - to see if I qualify to be a patient there & participate in their programs & studies.
I finally managed to get my (more or less) ex-doctor to order a 24 HR UPEP & a couple other of the standard MGUS monitoring tests, so at least I'll have that much done by the time I see my new doctor in mid-November. I was reminded, once again, the ordeal of 24 HR urine collection. I know it may seem silly/whiney/dramatic to mention the complications & unpleasantness of that test, especially given everything else that most of go through (such as bone marrow biopsies & other invasive, truly painful, procedures) - but still. I'd like to go on record as saying I firmly believe that the person who invented the 24 HR urine collection test was both male & a sadist - I imagine that this inventor was probably a mix of the Marquis de Sade & Freud - :0)
Anyway, I survived the "fun" of all that Cirque-du-Soleil-ish balancing/coordination act of a woman trying to collect all of her urine for 24 hours - with extremely arthritic hands & the exacerbated wonkiness of coordination & balance that comes along (like an extra-special gift) with MS, and, get this: when my results were posted to my lab's patient portal, it turns out that somehow my doctor's office ordered a different test, the WRONG test. So I endured all of that for nothing. #Grrrr #Sigh I'm trying to find out if the lab kept the sample & if the electrophoresis can still be performed, but I've not heard back yet. #MoreWaiting
Pinball, you keyed in on something that is such a hallmark of having MGUS/SM/multiple myeloma (any kind of chronic & or acute health issue, really) - the Waiting. It does take a toll. We're meant, as patients, to keep our stress levels as low as possible - and yet the whole process, the system, everything we must engage in to be vigilant about our health requires circles & circles of The Waiting Game. I just want you to know that I feel your pain; I share your pain. And, yes, it can be exhausting, overwhelming, and so, so hard to keep a calm head & body & spirit when we must wait. And wait. And keep waiting. And then begin the cycle all over again in another 6 months or another year. And then all the years that follow. Thank goodness we're not alone in this waiting, though. I'm learning, slowly but surely, to share my waiting-worries with friends & family, and even "strangers" - like this wonderful group of Myeloma Beacon supportive folks. I love that the name includes the word Beacon. I'm a writer, so words mean a great deal to me - and a word that translates to Light, and especially to the kind of light that guides us, gives us a reference point - like that of a lighthouse that radiates out, giving us a point of destination, marking the direction & pathway back to safe harbor in a storm - that's best kind of light and the perfect name for what is offered in these forums. I'm very grateful that this "place," and you, and everyone else in the community of Myeloma Beacon offer & share that light. Because I need it. This place & all of you matter. You make a difference in my life. And I hope that by being here, too, I'll be able to give back at least a small measure of what all of you so graciously offer to me.
Pinball, I hope you're able to keep your spirits up; we're here whenever you need us. I'm here, though, admittedly, I'm nowhere near as experienced or knowledgeable as most of the other folks. But I'm present & I'm willing to listen & to always offer support & share my own experiences whenever they might be able to help - or allow you to co-miserate in the good/venting kind of way - or offer a little bit of humor (like imagining a middle-aged woman with balance & coordination so horrifically deficit that she needs a mobility assistance dog just to walk, who was not so long ago standing in her own shower, trying to hold an orange plastic container (opening smaller than the size of a small jar of Jiffy peanut butter, for goodness sake!) with one arthritic hand, while simultaneously attempting to balance herself (with the other severely arthritic hand & shoulder) against the shower wall & (for the love of Pete!) trying Trying TRYING to NOT WOBBLE so that her pee-aiming will be true. LOL) ((Seriously, though, if I have to do a 24 HR urine collection again, sadly, embarrassingly, I think I'm going to have throw all pride & dignity & any semblance of independence out the window & ask my husband to help me. I nearly fell every single time I went to collect pee this last time. Are you old enough to remember those Weeble toys? - "Weebles wobble but they don't fall down" the commercial used to sing. Except I can & do fall down. Me + 24 HR urine collection = Dangerous Fall Risk. #KindaFunny #ButAlsoKindaScary #ButImStickingWithFunnyForNow))
Take good care, Pinball. And please keep us updated. I'll be thinking good thoughts for you ~
Thanks for posting your update. I, too, find interpreting all of the various tests (& the variety found in the measurements & reporting styles) very confusing (& often overwhelming).
I'm one of those rare folks - 15-20% with the Light Chain involvement only. A faint band was discovered in my urine way back in 1998 when I had a series of tests that eventually diagnosed me with Multiple Sclerosis. In 2002, my urine tests showed a moderate band, and along with other test results (serum, urine, sf, biopsies) & clinical findings, led to me being diagnosed with MGUS. It's already complicated & confusing for a patient to understand all the different tests & values & interpretations - so it gets even more challenging when someone like me falls outside the norm. And, as time goes on, the tests & values themselves often change, making it more difficult for all of us to compare years of historical test results to one another & to more recent test results in hopes of deciphering trends/abnormalities/changes. Even various doctors I've had have confessed to being confused - so if the doctors are confused, I think it's *really* understandable for us-MGUS-ers to be confused!
Do you feel confident in your current doctor? Are you able to have the discussions with your doctor that give you the answers & explanations you need in order to fully understand your MGUS status? Not just the results from your latest batch of testing, but how your latest test results compare/contrast with all of your previous test results? I was not, and so I now have a new initial visit/consultation scheduled with a different doctor, who came highly recommend by my immunologist, and I'm hoping for a much better "partnership." Since I'm lucky enough to live just outside of Houston (with the great medical center), I've also enrolled at MD Anderson and will have an entrance interview - or something like that, I forget what they called it - to see if I qualify to be a patient there & participate in their programs & studies.
I finally managed to get my (more or less) ex-doctor to order a 24 HR UPEP & a couple other of the standard MGUS monitoring tests, so at least I'll have that much done by the time I see my new doctor in mid-November. I was reminded, once again, the ordeal of 24 HR urine collection. I know it may seem silly/whiney/dramatic to mention the complications & unpleasantness of that test, especially given everything else that most of go through (such as bone marrow biopsies & other invasive, truly painful, procedures) - but still. I'd like to go on record as saying I firmly believe that the person who invented the 24 HR urine collection test was both male & a sadist - I imagine that this inventor was probably a mix of the Marquis de Sade & Freud - :0)
Anyway, I survived the "fun" of all that Cirque-du-Soleil-ish balancing/coordination act of a woman trying to collect all of her urine for 24 hours - with extremely arthritic hands & the exacerbated wonkiness of coordination & balance that comes along (like an extra-special gift) with MS, and, get this: when my results were posted to my lab's patient portal, it turns out that somehow my doctor's office ordered a different test, the WRONG test. So I endured all of that for nothing. #Grrrr #Sigh I'm trying to find out if the lab kept the sample & if the electrophoresis can still be performed, but I've not heard back yet. #MoreWaiting
Pinball, you keyed in on something that is such a hallmark of having MGUS/SM/multiple myeloma (any kind of chronic & or acute health issue, really) - the Waiting. It does take a toll. We're meant, as patients, to keep our stress levels as low as possible - and yet the whole process, the system, everything we must engage in to be vigilant about our health requires circles & circles of The Waiting Game. I just want you to know that I feel your pain; I share your pain. And, yes, it can be exhausting, overwhelming, and so, so hard to keep a calm head & body & spirit when we must wait. And wait. And keep waiting. And then begin the cycle all over again in another 6 months or another year. And then all the years that follow. Thank goodness we're not alone in this waiting, though. I'm learning, slowly but surely, to share my waiting-worries with friends & family, and even "strangers" - like this wonderful group of Myeloma Beacon supportive folks. I love that the name includes the word Beacon. I'm a writer, so words mean a great deal to me - and a word that translates to Light, and especially to the kind of light that guides us, gives us a reference point - like that of a lighthouse that radiates out, giving us a point of destination, marking the direction & pathway back to safe harbor in a storm - that's best kind of light and the perfect name for what is offered in these forums. I'm very grateful that this "place," and you, and everyone else in the community of Myeloma Beacon offer & share that light. Because I need it. This place & all of you matter. You make a difference in my life. And I hope that by being here, too, I'll be able to give back at least a small measure of what all of you so graciously offer to me.
Pinball, I hope you're able to keep your spirits up; we're here whenever you need us. I'm here, though, admittedly, I'm nowhere near as experienced or knowledgeable as most of the other folks. But I'm present & I'm willing to listen & to always offer support & share my own experiences whenever they might be able to help - or allow you to co-miserate in the good/venting kind of way - or offer a little bit of humor (like imagining a middle-aged woman with balance & coordination so horrifically deficit that she needs a mobility assistance dog just to walk, who was not so long ago standing in her own shower, trying to hold an orange plastic container (opening smaller than the size of a small jar of Jiffy peanut butter, for goodness sake!) with one arthritic hand, while simultaneously attempting to balance herself (with the other severely arthritic hand & shoulder) against the shower wall & (for the love of Pete!) trying Trying TRYING to NOT WOBBLE so that her pee-aiming will be true. LOL) ((Seriously, though, if I have to do a 24 HR urine collection again, sadly, embarrassingly, I think I'm going to have throw all pride & dignity & any semblance of independence out the window & ask my husband to help me. I nearly fell every single time I went to collect pee this last time. Are you old enough to remember those Weeble toys? - "Weebles wobble but they don't fall down" the commercial used to sing. Except I can & do fall down. Me + 24 HR urine collection = Dangerous Fall Risk. #KindaFunny #ButAlsoKindaScary #ButImStickingWithFunnyForNow))
Take good care, Pinball. And please keep us updated. I'll be thinking good thoughts for you ~
-
Moonspeak - Name: Moonspeak
- When were you/they diagnosed?: 2002
- Age at diagnosis: 38
6 posts
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