My husband was diagnosed with standard risk multiple myeloma a couple months ago. I have been reading in the forum and have much trouble making sense of all the lab work. So today I did ask the oncologist what his M-spike and light chain numbers are, since he just completed the first 21 days of Revlimid, Velcade, and dexamethasone treatment.
The oncologist said my husband's M-spike was down from 3.4 to 2.7 g/dL (34 to 27 g/l), and his light chains were still quite high (not sure if he said 170s, but I think that is what he said) but down somewhat and he hoped they would get down below 35.
Am I asking the right questions to know how he is responding?
Forums
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Hosanna - Name: Hosanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Nov. 2016
- Age at diagnosis: 62
Re: M-spike & free light chains - keys to tracking response?
Hosanna,
I sympathize with your ability to absorb all the information bombarding you at this time. It appears the treatment is doing its job. It is still real early to tell.
The reason I'm writing is to suggest using the online portal if your provider uses one. My providers use Epic billing which has a every useful application called MyChart which supplies all my recent test results. These test results are available online from home via a computer This is an excellent record keeping system. It also graphes trends.
I also record my consultations with my oncologist on my smartphone. She doesn't mind at all. Often she'll ask if I'm following some explanation, to which I'll respond, "let me listen to the tape again and if I don't understand I will ask again".
Hope these ideas help.
Crai
I sympathize with your ability to absorb all the information bombarding you at this time. It appears the treatment is doing its job. It is still real early to tell.
The reason I'm writing is to suggest using the online portal if your provider uses one. My providers use Epic billing which has a every useful application called MyChart which supplies all my recent test results. These test results are available online from home via a computer This is an excellent record keeping system. It also graphes trends.
I also record my consultations with my oncologist on my smartphone. She doesn't mind at all. Often she'll ask if I'm following some explanation, to which I'll respond, "let me listen to the tape again and if I don't understand I will ask again".
Hope these ideas help.
Crai
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: M-spike & free light chains - keys to tracking response?
Hi Hosanna,
Craig makes some good suggestions.
It's really helpful to plot the key myeloma markers over time, which includes the m-spike, the involved free light chain value (the higher of the kappa and lambda free light chain numbers) and the free light chain ratio (either kappa/lambda or lambda/kappa, whichever ratio is > 1). You can do this on a computer program such as Excel or just by hand on a piece of paper. Trends will then start to jump out at you over time and you can easily spot changes. You can get an idea of some of the key markers I track on this post:
https://myelomabeacon.org/forum/fenofibrate-tricor-and-multiple-myeloma-t2690-60.html#p46149
Your oncologist may also have these kinds of graphs in the summary that he looks at on his computer when he meets with you - so simply ask him for a copy. As Craig mentioned, this kind of information may also be available to you on a "patient portal" at the facility where your husband is seen. Also, if Quest Diagnostics is doing the labwork (the lab test results will always tell you where the lab numbers were run), you can access the graphs of your various lab numbers on their website.
https://myquest.questdiagnostics.com/web/home
Craig makes some good suggestions.
It's really helpful to plot the key myeloma markers over time, which includes the m-spike, the involved free light chain value (the higher of the kappa and lambda free light chain numbers) and the free light chain ratio (either kappa/lambda or lambda/kappa, whichever ratio is > 1). You can do this on a computer program such as Excel or just by hand on a piece of paper. Trends will then start to jump out at you over time and you can easily spot changes. You can get an idea of some of the key markers I track on this post:
https://myelomabeacon.org/forum/fenofibrate-tricor-and-multiple-myeloma-t2690-60.html#p46149
Your oncologist may also have these kinds of graphs in the summary that he looks at on his computer when he meets with you - so simply ask him for a copy. As Craig mentioned, this kind of information may also be available to you on a "patient portal" at the facility where your husband is seen. Also, if Quest Diagnostics is doing the labwork (the lab test results will always tell you where the lab numbers were run), you can access the graphs of your various lab numbers on their website.
https://myquest.questdiagnostics.com/web/home
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: M-spike & free light chains - keys to tracking response?
Thank you Craig and Multibilly, I will look into this online portal. I get a print out of labs on most visits, but I don't know what all the particular numbers mean. Hopefully, I will learn soon.
I am about to take my husband back to the ER now because the last time he got the Zometa drip (we asked them to increase the infusion time to one hour this time) and Velcade shot, he went into septic shock and was in the intensive care unit (ICU). He had Zometa yesterday and his fever climbed to 102.4 F (39.1 C) within a short time today, and I am afraid he may crash again. He could just need an antibiotic. Off we go soon!
I am about to take my husband back to the ER now because the last time he got the Zometa drip (we asked them to increase the infusion time to one hour this time) and Velcade shot, he went into septic shock and was in the intensive care unit (ICU). He had Zometa yesterday and his fever climbed to 102.4 F (39.1 C) within a short time today, and I am afraid he may crash again. He could just need an antibiotic. Off we go soon!
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Hosanna - Name: Hosanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Nov. 2016
- Age at diagnosis: 62
Re: M-spike & free light chains - keys to tracking response?
Finally received my first serum free light chain results today. Only in my second cycle, and had the bloodwork done on January 6. Took 10 days to get these results.
Kappa Free Light Chains - 20.4 mg/L [Ref. Range 3.3-19.4]
Lambda Free Light Chain - 7.0 mg/L [5.7-26.3]
Kappa – Lambda Free Light Chain Ratio - 2.91 [0.26-1.65]
Pathology comment - Both the kappa serum free light chain and kappa-lambda free light chain ratio are slightly increased. While this is consistent with monoclonal gammopathy, correlation with serum protein electrophoresis and immunofixation as well as followup testing is advised.
Just trying to learn more about this. Gather I will need to track each month and look for the patterns.
Kappa Free Light Chains - 20.4 mg/L [Ref. Range 3.3-19.4]
Lambda Free Light Chain - 7.0 mg/L [5.7-26.3]
Kappa – Lambda Free Light Chain Ratio - 2.91 [0.26-1.65]
Pathology comment - Both the kappa serum free light chain and kappa-lambda free light chain ratio are slightly increased. While this is consistent with monoclonal gammopathy, correlation with serum protein electrophoresis and immunofixation as well as followup testing is advised.
Just trying to learn more about this. Gather I will need to track each month and look for the patterns.
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
Re: M-spike & free light chains - keys to tracking response?
Colin,
You are correct to track them and look for trends. The three tests mentioned in the pathology report are the most critical multiple myeloma measures. The serum free light chain (sFLC) assay which you reported on with the involved free light chain and the free light chain ratio being most important. The SPEP (serum protein electrophoresis), which measures the M-spike if there is one, and finally the IFE (immunofixation electrophoresis), which identifies the type of monoclonal antibody involved, e.g.: IgG, IgA etc.
The most common form of multiple myeloma is IgG with either a kappa or lambda involved light chain.
Hope this helps.
Ron
You are correct to track them and look for trends. The three tests mentioned in the pathology report are the most critical multiple myeloma measures. The serum free light chain (sFLC) assay which you reported on with the involved free light chain and the free light chain ratio being most important. The SPEP (serum protein electrophoresis), which measures the M-spike if there is one, and finally the IFE (immunofixation electrophoresis), which identifies the type of monoclonal antibody involved, e.g.: IgG, IgA etc.
The most common form of multiple myeloma is IgG with either a kappa or lambda involved light chain.
Hope this helps.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: M-spike & free light chains - keys to tracking response?
Thanks Ron.
I am the most common one - IgG kappa. I will speak to the team about the M-spike which does not seem to show up on the results. Or is the protein electrophoresis expressed as total protein, the M-spike? The result for total protein was 79 g/L (ref range 60-80), which is just in range.
I am the most common one - IgG kappa. I will speak to the team about the M-spike which does not seem to show up on the results. Or is the protein electrophoresis expressed as total protein, the M-spike? The result for total protein was 79 g/L (ref range 60-80), which is just in range.
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
Re: M-spike & free light chains - keys to tracking response?
Colin,
Total protein and M-spike are two different things and tracked by different tests. The M spike is determined through the SPEP test or sometimes a urine-based test UPEP, but that type is less common.
Total protein and M-spike are two different things and tracked by different tests. The M spike is determined through the SPEP test or sometimes a urine-based test UPEP, but that type is less common.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: M-spike & free light chains - keys to tracking response?
Hi Colin,
If you look under the heading of 'Immunology' on your lab results, the 'M' protein would be the 'monoclonal #1' or 'monoclonal #2'. ( I always ask for copies of my lab results, since we don't have them available through a patient portal yet.) There is no 'normal' value for the M protein, since it represents excess antibody in the blood, but different levels indicate the severity of the myeloma. MGUS would have a lower level than smoldering, Type 1, 2 or 3 usually.
When I was diagnosed in 2009 with stage 3, my 'M' protein was 58 (5.8 in the US lab terms), but now after extensive treatment it is only between 1 and 1.5.
If the monoclonal is not available with the rest of the lab tests, since it takes longer to get the results back, then whether or not the total protein is within normal range or not gives some indication of how much excess antibody protein is in the blood.
l hope that helps. It took me quite a while to be able to decipher my lab results.
If you look under the heading of 'Immunology' on your lab results, the 'M' protein would be the 'monoclonal #1' or 'monoclonal #2'. ( I always ask for copies of my lab results, since we don't have them available through a patient portal yet.) There is no 'normal' value for the M protein, since it represents excess antibody in the blood, but different levels indicate the severity of the myeloma. MGUS would have a lower level than smoldering, Type 1, 2 or 3 usually.
When I was diagnosed in 2009 with stage 3, my 'M' protein was 58 (5.8 in the US lab terms), but now after extensive treatment it is only between 1 and 1.5.
If the monoclonal is not available with the rest of the lab tests, since it takes longer to get the results back, then whether or not the total protein is within normal range or not gives some indication of how much excess antibody protein is in the blood.
l hope that helps. It took me quite a while to be able to decipher my lab results.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: M-spike & free light chains - keys to tracking response?
Thanks for the help Ron and Nancy. Here is some additional information
Under Serum Proteins was the following:
Protein Electrophoresis
Albumin 42.0 35.0-50.0 g/L
Alpha 1 Globulin 2.8 2.0-4.0 g/L
Alpha 2 Globulin 6.6 5.0-9.0 g/L
Beta 1 Globulin 3.8 3.0-6.0 g/L
Beta 2 Globulin 2.7 2.0-5.0 g/L
Gamma Globulin A 21.2 7.0-14.0 g/L
New method effective 2016/05/16: reference intervals have been adjusted
Monoclonal bands are measured differently, resulting in decreased concentrations, particularly for small bands.
Protein Monoclonal Band 1 Pattern A 19.8 g/L
Known as IgG kappa paraprotein in gamma zone has significantly decreased since November 28. Marked background gamma suppression persists.
Nov. 28 value of Protein Monoclonal Band 1 Pattern A 39.4 g/L
Thanks for your help. I am very new to this so wasn't sure what to look for.
Under Serum Proteins was the following:
Protein Electrophoresis
Albumin 42.0 35.0-50.0 g/L
Alpha 1 Globulin 2.8 2.0-4.0 g/L
Alpha 2 Globulin 6.6 5.0-9.0 g/L
Beta 1 Globulin 3.8 3.0-6.0 g/L
Beta 2 Globulin 2.7 2.0-5.0 g/L
Gamma Globulin A 21.2 7.0-14.0 g/L
New method effective 2016/05/16: reference intervals have been adjusted
Monoclonal bands are measured differently, resulting in decreased concentrations, particularly for small bands.
Protein Monoclonal Band 1 Pattern A 19.8 g/L
Known as IgG kappa paraprotein in gamma zone has significantly decreased since November 28. Marked background gamma suppression persists.
Nov. 28 value of Protein Monoclonal Band 1 Pattern A 39.4 g/L
Thanks for your help. I am very new to this so wasn't sure what to look for.
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
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