I recently had a full body bone scan and also did another 24-hour urine collection for the UPEP testing. My bone scan came back clear still. But due to the amount of protein continuing to spill over in my urine and that I am still showing an upward trend with other results, my doctor feels he should move me into the smoldering stage.
This was my four UPEP test in 2 years and my second one in 4 months.
My results for the amount of protein in my urine has been:
Oct 2014 295 mg/24hr
Oct 2015 368 mg/24hr
Jun 2016 441 mg/24hr
Oct 2016 660 mg/24hr
The results show a 50% increase in the protein that is spilling over into the urine.
My free lambda light chain was up from 419 in June 2016 to 499 in October 2016.
My other testing which was being done every 4 months show a steady vertical line increase in my IgG levels:
Oct 2014 2393 mg/dl (diagnosed MGUS)
Feb 2015 2624 mg/dl
Jun 2015 2759 mg/dl
Feb 2016 2883 mg/dl
Oct 2016 2906 mg/dl (moved to smoldering)
M-spike is now 2.0 g/dl (20 g/l).
I do not show anemic although I do seem to get tired more quickly than I used to, I'm chalking it up to being 58. I have no other symptoms other than a LOT of protein in the urine.
My doctor is very worried about my kidneys with the amount of protein that continues to spill over into my urine and has asked me to consider starting treatment when I come for my next testing in 4 more weeks. He has moved me from testing every 4 months to every 2 months now. He believes I am a greater risk now as things seem to be increasing each time. He believes it is time to start trying to knock this thing back some and honestly I think I agree, although it is still a bit scary.
Does this all make sense? Am I thinking right in that starting a treatment (?) may be my best option at this time? Are there other questions I should be asking?
Just need some help here ... it felt like a gut punch yesterday, although I suspected this was what I was going to hear. I just received the letter yesterday asking me to take all of this into consideration before my next visit. Would appreciate some thoughts.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Too much protein spilling over into urine
Hi Janes76,
Good to hear from you.
While your urine protein level is certainly above normal, it's not at the nephrotic-range level of 3g/24-hr, but you have hit the 500mg/24-hr mark that might suggest renal involvement.
Answering a few questions may give others on this forum some better ideas of how to respond to your post.
What has your urine M-spike (involved urine free light chain) been doing during over the past couple of years? Has it increased like your total urine protein count has? What have your urinary albumin and creatinine levels done during this time?
What have your serum BUN, creatinine and eGFR levels been doing over the past couple of years?
What has your serum free light chain ratio been doing over the past couple of years?
Have you ever been tested for amlyoidosis or discussed this as a possibility with your doctor?
I might also suggest getting a second opinion before pulling the trigger on starting treatment, but that is obviously your call.
Good to hear from you.
While your urine protein level is certainly above normal, it's not at the nephrotic-range level of 3g/24-hr, but you have hit the 500mg/24-hr mark that might suggest renal involvement.
Answering a few questions may give others on this forum some better ideas of how to respond to your post.
What has your urine M-spike (involved urine free light chain) been doing during over the past couple of years? Has it increased like your total urine protein count has? What have your urinary albumin and creatinine levels done during this time?
What have your serum BUN, creatinine and eGFR levels been doing over the past couple of years?
What has your serum free light chain ratio been doing over the past couple of years?
Have you ever been tested for amlyoidosis or discussed this as a possibility with your doctor?
I might also suggest getting a second opinion before pulling the trigger on starting treatment, but that is obviously your call.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Too much protein spilling over into urine
Thanks for getting back to me. And thanks for all the added info-type questions that might need to be answered. As I had stated, man this is so out of my league in so many ways. I have all of my test results from the beginning and I will go back and do some charting in those other factors to see if I have that added info to give here.
Amyloidosis has come up in discussion, but I do not present any of the symptoms toward the criteria.
Also, I had a PET scan last year to make sure I was clean of cancer. I have recently read that the full body bone scan may not pick things up as well as an MRI though.
I will post again after I have charted results.
I am currently on my second doctor. The first doctor also was concerned at the rate of progression in my test results overall. First doctor transferred, thus second doctor has had to study all results to see where I am at this point.
Ultimately I do understand that this is going to be my choice and mine alone as far as starting a treatment. I'm trying to educate myself again as much as I can to feel that I can make the choices.
Multibilly, thanks for all your thoughts and the time you take to answer to those of us learning in here.
Amyloidosis has come up in discussion, but I do not present any of the symptoms toward the criteria.
Also, I had a PET scan last year to make sure I was clean of cancer. I have recently read that the full body bone scan may not pick things up as well as an MRI though.
I will post again after I have charted results.
I am currently on my second doctor. The first doctor also was concerned at the rate of progression in my test results overall. First doctor transferred, thus second doctor has had to study all results to see where I am at this point.
Ultimately I do understand that this is going to be my choice and mine alone as far as starting a treatment. I'm trying to educate myself again as much as I can to feel that I can make the choices.
Multibilly, thanks for all your thoughts and the time you take to answer to those of us learning in here.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Too much protein spilling over into urine
Going to try to answer some of those questions now. I did learn in charting that it seems my test results has not been consistently the exact same test each time. For example, sometimes I'm just given the serum IgG result and not the light chain, and vice versa. That has happened twice.
You ask about a 'Urine' M-spike. All I know is that my M-spike has now increased from 1.5 to 2. This was given to me before I did this latest urine test. So a urine M-spike? I'm not aware of that unless I'm not understanding what is being asked plus I have not seen my doctor to discuss this last urine test. I only received the letter recently, explaining what has been found with increased protein and the doctors concerns.
Serum Albumin levels have ranged from 4.1 - 3.6 over the 2 years
Serum Creatinine levels ranged from 0.92 - 0.79
BUN has ranged from 13 - 18
I'm only given a 'GFR' result each time and it has always said >60.
My serum light chain ratio has remained at 0.02 and 0.03 over the 2 years.
The serum free lambda light chain has steadily increased:
296.1
301.5
320.1
384.8
419.4
499
I have been given a kappa-lambda ratio from urine one time. And, I have only received the kappa and lambda results from urine one time, the other 3 times was just the TP results.
Not sure if this helps with explaining a little bit more of me or not, but it's the best I can give for info. According to the steady increase of my blood serum results, it seems that each urine test has also increased in TP and is the same steady upward trend if plotted. Except for this last time the jump was a bit bigger in the urine protein.
You ask about a 'Urine' M-spike. All I know is that my M-spike has now increased from 1.5 to 2. This was given to me before I did this latest urine test. So a urine M-spike? I'm not aware of that unless I'm not understanding what is being asked plus I have not seen my doctor to discuss this last urine test. I only received the letter recently, explaining what has been found with increased protein and the doctors concerns.
Serum Albumin levels have ranged from 4.1 - 3.6 over the 2 years
Serum Creatinine levels ranged from 0.92 - 0.79
BUN has ranged from 13 - 18
I'm only given a 'GFR' result each time and it has always said >60.
My serum light chain ratio has remained at 0.02 and 0.03 over the 2 years.
The serum free lambda light chain has steadily increased:
296.1
301.5
320.1
384.8
419.4
499
I have been given a kappa-lambda ratio from urine one time. And, I have only received the kappa and lambda results from urine one time, the other 3 times was just the TP results.
Not sure if this helps with explaining a little bit more of me or not, but it's the best I can give for info. According to the steady increase of my blood serum results, it seems that each urine test has also increased in TP and is the same steady upward trend if plotted. Except for this last time the jump was a bit bigger in the urine protein.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Too much protein spilling over into urine
Well, I'm not a doc, but your BUN, creatinine and eGFR levels all seem to be in the normal range, which is good news (these are all serum markers that help determine if your kidneys are functioning correctly). A kappa/lambda ratio of 0.02 or 0.03 means that your lambda/kappa ratio (involved/uninvolved free light chain ratio) has fluctuated between 33 and 50 (just take the inverse of 0.02 and 0.03 to get to these values, which are the way folks usually refer to their free light chain ratios, regardless of how the lab reports state them).
Using the new IMWG guidelines, an involved/uninvolved serum free light chain ratio of 100 is what is considered a "Myeloma Defining Event" (MDE). So, it may be that your doctor thinks that you are headed in that direction based on your increasing lambda value. I would still recommend getting a second opinion from another specialist before pulling the trigger on starting treatment, but again that's your call. See this article for more information on Myeloma Defining Events: https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Note that if your doctor is running a 24 hour urine test, he/she is almost certainly running a urine electrophoresis test that would return a urine M-spike level, not just total protein values. Unfortunately, the medical establishment uses the term "M-spike" to refer to both the amount of monoclonal serum heavy chain protein (which is what you reported as 2.0 g/dL) and the amount of monoclonal urine light chain protein (aka Bence Jones proteins), so the term "M-spike" can get to be confusing. You might want to go back and ask your doctor about your urine M-spike the next time you see him/her.
Using the new IMWG guidelines, an involved/uninvolved serum free light chain ratio of 100 is what is considered a "Myeloma Defining Event" (MDE). So, it may be that your doctor thinks that you are headed in that direction based on your increasing lambda value. I would still recommend getting a second opinion from another specialist before pulling the trigger on starting treatment, but again that's your call. See this article for more information on Myeloma Defining Events: https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Note that if your doctor is running a 24 hour urine test, he/she is almost certainly running a urine electrophoresis test that would return a urine M-spike level, not just total protein values. Unfortunately, the medical establishment uses the term "M-spike" to refer to both the amount of monoclonal serum heavy chain protein (which is what you reported as 2.0 g/dL) and the amount of monoclonal urine light chain protein (aka Bence Jones proteins), so the term "M-spike" can get to be confusing. You might want to go back and ask your doctor about your urine M-spike the next time you see him/her.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Too much protein spilling over into urine
Janes76,
Urine test is very confusing. My doctor ordered it twice and then I realized and pointed out to him that Bence-Jones (aka urine M-protein) was not ordered. Per lab technician, urine immunofixation is the proper order to measure M-protein in urine. That was ordered my last test and supposedly did not show M-protein in urine (discrete bands not detected). While my total protein and creatinine in urine is somewhat high, I do believe that blood creatinine is more important. Another thing is I think that urine volume matters. Mine is usually at least 4 liters, and total protein of 1-120 mg/L considered within range.
That implies to me, by the way, that measure of mg/L could be the key? For instance, your value of 440 mg/24 hours could mean 105 mg/L with 4 liter volume, and that would be within normal still? Also your blood kidney levels are good, which should mean no renal involvement?
Interestingly, another doc I just saw in the same system does not even do 24-hour urine tests at all. She has 30 plus years of experience, and specializes in bone marrow / blood malignancies.
This surprised me, as one of criteria for Revlimid / placebo clinical trial is M-protein 1 g/dl, or 200mg of monoclonal proteins in urine, meaning urine is an important marker.
Also your IgG level just reflects your serum M protein, for instance 2906 mg/dl includes 2000 mg/dl of M-protein, so the real value is 2906-2000 = 906, which is normal.
Your FLC ratio is 30-50, which is one of the high risk criteria. Mine has fluctuated between 23-34, with one jump to 65 that was not confirmed next test. My other high risk criteria is immunoparesis, or low uninvolved immunoglobulins, IgA=31 and IgM =18.
Good luck!
Urine test is very confusing. My doctor ordered it twice and then I realized and pointed out to him that Bence-Jones (aka urine M-protein) was not ordered. Per lab technician, urine immunofixation is the proper order to measure M-protein in urine. That was ordered my last test and supposedly did not show M-protein in urine (discrete bands not detected). While my total protein and creatinine in urine is somewhat high, I do believe that blood creatinine is more important. Another thing is I think that urine volume matters. Mine is usually at least 4 liters, and total protein of 1-120 mg/L considered within range.
That implies to me, by the way, that measure of mg/L could be the key? For instance, your value of 440 mg/24 hours could mean 105 mg/L with 4 liter volume, and that would be within normal still? Also your blood kidney levels are good, which should mean no renal involvement?
Interestingly, another doc I just saw in the same system does not even do 24-hour urine tests at all. She has 30 plus years of experience, and specializes in bone marrow / blood malignancies.
This surprised me, as one of criteria for Revlimid / placebo clinical trial is M-protein 1 g/dl, or 200mg of monoclonal proteins in urine, meaning urine is an important marker.
Also your IgG level just reflects your serum M protein, for instance 2906 mg/dl includes 2000 mg/dl of M-protein, so the real value is 2906-2000 = 906, which is normal.
Your FLC ratio is 30-50, which is one of the high risk criteria. Mine has fluctuated between 23-34, with one jump to 65 that was not confirmed next test. My other high risk criteria is immunoparesis, or low uninvolved immunoglobulins, IgA=31 and IgM =18.
Good luck!
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Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: Too much protein spilling over into urine
Thanks for the responses. It gives me some things to try to read up on and understand some more.
I think I should have studied in the medical field in college instead of the education field way back when for it seems these days if I get sick I almost need a medical degree to understand what's going on with me.
I will get my questions ready for my doctor and see what the test results look like in a few weeks. Currently, though, I am not going to make any decision toward treatment until after the holidays. I feel that I need to get through them first.
I will post an update of my results though after my next appointments.
I think I should have studied in the medical field in college instead of the education field way back when for it seems these days if I get sick I almost need a medical degree to understand what's going on with me.
I will get my questions ready for my doctor and see what the test results look like in a few weeks. Currently, though, I am not going to make any decision toward treatment until after the holidays. I feel that I need to get through them first.
I will post an update of my results though after my next appointments.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Too much protein spilling over into urine
I've been seeing my results drop in for this round of blood testing. I continue on an upward trend.
Test Oct Dec
Serum IgG 2906 3048
S Lambda 499 509
K/L Ratio 0.02 (has always been low)
Creatinine 0.84 1.02
Will have my follow-up in a few days.
Test Oct Dec
Serum IgG 2906 3048
S Lambda 499 509
K/L Ratio 0.02 (has always been low)
Creatinine 0.84 1.02
Will have my follow-up in a few days.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Too much protein spilling over into urine
My follow-up was as I expected. The doctor is still very concerned about my kidneys. He explained what happens when the protein gets to be too much for my kidneys to handle. I really don't think I want to deal with that either. He said his concern is because if my kidneys start to be affected a great deal, then that could hamper the kinds of treatments that would be offered due to the kinds of drugs used and that my kidneys wouldn't be able to do their filtering as they normally would.
I asked about a urine M-spike. He said I actually have 2 urine M-spikes. One was 0.257 g. And then he said I had a tiny M-spike of a second abnormal protein now, but did not name that protein. He also mentioned that I am continuingly trending upward in all areas.
We all felt it was time for the second opinion in the event that treatment would need to be started in the not too distant future. So I am scheduled for my next checkup in 6 weeks, and also waiting for referral information.
As a side note: wow, I had no idea this is what my retirement would be like when I retired early 3 years ago. The very next year I started this journey.
I asked about a urine M-spike. He said I actually have 2 urine M-spikes. One was 0.257 g. And then he said I had a tiny M-spike of a second abnormal protein now, but did not name that protein. He also mentioned that I am continuingly trending upward in all areas.
We all felt it was time for the second opinion in the event that treatment would need to be started in the not too distant future. So I am scheduled for my next checkup in 6 weeks, and also waiting for referral information.
As a side note: wow, I had no idea this is what my retirement would be like when I retired early 3 years ago. The very next year I started this journey.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
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