Just received my latest MGUS test results (done every 6 months).
M protein remains the same (0.01), but the free light chains ratio have gone up for the past three tests and are now at 5.3. Was 4.4 last test, and 3.2 before that. All the gamma globulins are in range.
I also have sarcoid with renal involvement and anemia of chronic disease, but all is stable there on the Marshall Protocol.
Still have to do urine test for Bence Jones protein, but that was clear 6 months back.
The myeloma specialist does not want to see me until ratio is up to 10, but I am concerned about progressing.
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Re: Free light chain ratio going up
Kas,
You might want to include the units of measure for your M-spike. A value of "0.01" doesn't tell us what the M-spike really is since different labs use different units of measure.
I'm not a doc, but your FLC ratio fluctuations are kind of "down in the noise" and I can see why your onc may not want to see you again until your ratio is up to 10 (which is still a pretty low FLC ratio), especially given that you have a low M-spike (regardless of the units of measure for your M-spike). These are just not significant jumps in your FLC ratio and could be written off to normal variations in your kappa and lambda FLC values.
I take it that your renal and anemia conditions are not attributed to the MGUS and are indeed attributed to the sarcoidosis?? If there are significant renal issues or anemia due to a monoclonal gammopathy, then you wouldn't really be classified as MGUS and would instead meet the one or more of the CRAB criteria for symptomatic multiple myeloma.
You might want to include the units of measure for your M-spike. A value of "0.01" doesn't tell us what the M-spike really is since different labs use different units of measure.
I'm not a doc, but your FLC ratio fluctuations are kind of "down in the noise" and I can see why your onc may not want to see you again until your ratio is up to 10 (which is still a pretty low FLC ratio), especially given that you have a low M-spike (regardless of the units of measure for your M-spike). These are just not significant jumps in your FLC ratio and could be written off to normal variations in your kappa and lambda FLC values.
I take it that your renal and anemia conditions are not attributed to the MGUS and are indeed attributed to the sarcoidosis?? If there are significant renal issues or anemia due to a monoclonal gammopathy, then you wouldn't really be classified as MGUS and would instead meet the one or more of the CRAB criteria for symptomatic multiple myeloma.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Free light chain ratio going up
My wife's FLC ratio goes 5.94, 4.43 and 5.4 over a 6 month period. Our myeloma specialist is not concerned. The kappa is stable at around 40 (IgA kappa) and her lambda too at around 10. Lambda dropped to 8 but she has a minor spring rash which he said could possibly lower some of the values, but really nothing to worry about. Her M-spike is low too, maxed at 0.1 (but detected on IFE twice so it is real).
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Cedb74
Re: Free light chain ratio going up
Thank you for your reassuring replies here. Much appreciated.
Of course I cannot be 100% sure of my renal dysfunction and anemia being totally due to sarcoid, as I have not had a renal biopsy. All I do know is that I had both for a good few years before my MGUS diagnosis, and I had had electrophoresis testing.The myeloma specialist I saw 2 years back at the time of my BMI felt pretty sure I had chronic kidney disease from sarcoid and the anemia of chronic disease, perhaps also related to my low EPO level and the drug I am taking in high doses on the Marshall Protocol (Olmetec, olmesartan, Benicar). The Olmetec is reno- protective, and apparently may even be keeping me MGUS, but I guess I do need to find out what is really going on in my kidneys, which bounce around , but give me no symptoms. At present my eGFR is 38 (up from 33 when I had gastric upset). I watch my protein intake and make sure I am well hydrated always.
I guess my next steps will be to repeat my 24-hour urine test for Bence Jones protein and creatinine clearance, and go from there, and even consider a renal biopsy, if necessary.
I will pick up hard copies of my results by Friday and post them here with the values for you to see.
Despite my issues, I feel well and am able to work, exercise etc still, so feel blessed there.
Of course I cannot be 100% sure of my renal dysfunction and anemia being totally due to sarcoid, as I have not had a renal biopsy. All I do know is that I had both for a good few years before my MGUS diagnosis, and I had had electrophoresis testing.The myeloma specialist I saw 2 years back at the time of my BMI felt pretty sure I had chronic kidney disease from sarcoid and the anemia of chronic disease, perhaps also related to my low EPO level and the drug I am taking in high doses on the Marshall Protocol (Olmetec, olmesartan, Benicar). The Olmetec is reno- protective, and apparently may even be keeping me MGUS, but I guess I do need to find out what is really going on in my kidneys, which bounce around , but give me no symptoms. At present my eGFR is 38 (up from 33 when I had gastric upset). I watch my protein intake and make sure I am well hydrated always.
I guess my next steps will be to repeat my 24-hour urine test for Bence Jones protein and creatinine clearance, and go from there, and even consider a renal biopsy, if necessary.
I will pick up hard copies of my results by Friday and post them here with the values for you to see.
Despite my issues, I feel well and am able to work, exercise etc still, so feel blessed there.
Re: Free light chain ratio going up
Here are my latest results:
Total Protein 71 (60-80 g/L)
Albumin 41 (34-45 g/L)
Alpha 1 Globulin 3 (2-4 g/L)
Alpha 2 Globulin 7 (5-10 g/L)
Beta 1 Globulin 4 (4-6 g/L)
Beta 2 Globulin 3 (2-5 g/L)
Gamma Globulin 14 (7-15 g/L)
M1 Protein 1 *
Kappa Free Light Chain 53.40 (3.30-19.60 mg/L) *
Lambda Free Light Chain 10.10 (5.60-26.30 mg/L)
Kappa:Lamba FLC ratio 5.29 (0.26-1.65)
Total Protein 71 (60-80 g/L)
Albumin 41 (34-45 g/L)
Alpha 1 Globulin 3 (2-4 g/L)
Alpha 2 Globulin 7 (5-10 g/L)
Beta 1 Globulin 4 (4-6 g/L)
Beta 2 Globulin 3 (2-5 g/L)
Gamma Globulin 14 (7-15 g/L)
M1 Protein 1 *
Kappa Free Light Chain 53.40 (3.30-19.60 mg/L) *
Lambda Free Light Chain 10.10 (5.60-26.30 mg/L)
Kappa:Lamba FLC ratio 5.29 (0.26-1.65)
Re: Free light chain ratio going up
Kas,
I am new at this and I see your ratio is high, but you have MGUS. Did you have a marrow biopsy? My ratio is 2.86 with no M-spike, all other levels in normal range. Had a bone marrow biopsy yesterday. Have to wait two weeks for result, but they are thinking myeloma. Could it be MGUS? I was diagnosed with MGUS in 2012.
Debi
I am new at this and I see your ratio is high, but you have MGUS. Did you have a marrow biopsy? My ratio is 2.86 with no M-spike, all other levels in normal range. Had a bone marrow biopsy yesterday. Have to wait two weeks for result, but they are thinking myeloma. Could it be MGUS? I was diagnosed with MGUS in 2012.
Debi
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
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