I'm new here.
I was diagnosed with MGUS 9 years ago. I was just given my test results and referred to a hematologist. Do these numbers mean my MGUS has progressed?
Kappa free lights 8.8
Lambda free lights 1147.8
Ratio 0.01
Any help would be appreciated.
Forums
Re: Lambda FLC very high; has my MGUS progressed?
Hi Jessitaylor,
Welcome to the forum.
You have a pretty high involved/uninvolved free light chain ratio of ~130 (1147.8/8.8). That technically qualifies you as having a "myeloma defining event (also known as an "MDE"). See this article for a discussion on just what an MDE is:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
As you read through the above article, please keep Dr. Rajkumar's closing comment in mind:
"Finally, no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when continued observation will be in the patients’ best interests."
Do you also know what your M-spike, calcium, creatinine and hemoglobin levels are? Those figures might also provide some additional clues on the current status of your disease.
Your doctor will likely want to re-test you in the near future to make sure that your numbers are correct (myeloma lab tests can sometimes yield incorrect results). But if you truly have a serum free light chain ratio on the order of 130, that would likely warrant additional testing that may include a bone marrow biopsy and radiological imaging such as a PET/CT or MRI.
Lastly, if you aren't already working with a hematologist who works exclusively with myeloma, you may want to consider seeking one out. If you need recommendations on where to find a good specialist, simply let folks on this forum know what city you are in, and we can help point you to a center with myeloma specialists.
Good luck and take care.
Welcome to the forum.
You have a pretty high involved/uninvolved free light chain ratio of ~130 (1147.8/8.8). That technically qualifies you as having a "myeloma defining event (also known as an "MDE"). See this article for a discussion on just what an MDE is:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
As you read through the above article, please keep Dr. Rajkumar's closing comment in mind:
"Finally, no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when continued observation will be in the patients’ best interests."
Do you also know what your M-spike, calcium, creatinine and hemoglobin levels are? Those figures might also provide some additional clues on the current status of your disease.
Your doctor will likely want to re-test you in the near future to make sure that your numbers are correct (myeloma lab tests can sometimes yield incorrect results). But if you truly have a serum free light chain ratio on the order of 130, that would likely warrant additional testing that may include a bone marrow biopsy and radiological imaging such as a PET/CT or MRI.
Lastly, if you aren't already working with a hematologist who works exclusively with myeloma, you may want to consider seeking one out. If you need recommendations on where to find a good specialist, simply let folks on this forum know what city you are in, and we can help point you to a center with myeloma specialists.
Good luck and take care.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Lambda FLC very high; has my MGUS progressed?
Thanks for your reply.
My creatinine is 83.
Hemoglobin is 126.
I don't see a calcium number, but I was diagnosed with osteoporosis a few years back. I take Actonel (risedronate) for that.
I also see nothing that says M-spike. Is there another test name for that?
Sorry such a dork about the tests/results.
Thanks again.
My creatinine is 83.
Hemoglobin is 126.
I don't see a calcium number, but I was diagnosed with osteoporosis a few years back. I take Actonel (risedronate) for that.
I also see nothing that says M-spike. Is there another test name for that?
Sorry such a dork about the tests/results.
Thanks again.
Re: Lambda FLC very high; has my MGUS progressed?
Hi again,
Lab tests are really hard to interpret the first few times around. Don't kick yourself.
When you post your numbers, please include the units of measure (e.g. "g/dl") and the reference range. These tend to vary from lab to lab, so it's important to note them.
You should be able to find your calcium level on your comprehensive metabolic panel (the same test that gave you your creatinine level). Even though you have osteoporosis, it won't be a given that you will have a low serum calcium number if myeloma is in play.
The "M-spike" number is included on a test known as a serum protein electrophoresis test (also known as "SPEP", or some derivative thereof). The M-spike may be labeled as "abnormal protein", "paraprotein", "monoclonal protein", "m-protein", or something like that. It also may appear on a separate notation on the SPEP report and may not necessarily show up if you are looking at your results online. The "M-spike" figure in particular is really hard to find on some reports and labs should be chastised for not standardizing on one given format.
Lab tests are really hard to interpret the first few times around. Don't kick yourself.
When you post your numbers, please include the units of measure (e.g. "g/dl") and the reference range. These tend to vary from lab to lab, so it's important to note them.
You should be able to find your calcium level on your comprehensive metabolic panel (the same test that gave you your creatinine level). Even though you have osteoporosis, it won't be a given that you will have a low serum calcium number if myeloma is in play.
The "M-spike" number is included on a test known as a serum protein electrophoresis test (also known as "SPEP", or some derivative thereof). The M-spike may be labeled as "abnormal protein", "paraprotein", "monoclonal protein", "m-protein", or something like that. It also may appear on a separate notation on the SPEP report and may not necessarily show up if you are looking at your results online. The "M-spike" figure in particular is really hard to find on some reports and labs should be chastised for not standardizing on one given format.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Lambda FLC very high; has my MGUS progressed?
Hi again,
First of all, I am in Canada, so they may use different units.
Here are some more of my test results. Maybe they will help to shed some light on the tests.
Urine chemistry
Protein urine H 0.17 <0.15 g/l
Albumin (Urine) <0.05 g/l
Alpha 1 <0.05 g/l
Alpha 2 <0.05 g/l
Beta <0.09 g/l
A discrete band was found in the beta region
Gamma <0.05 g/l
Immonofixation Urine
Protein H0.17
Immunofixation urine monoclonal free lights (Bence Jones protein) detected
Growth Hormone H 8.3 <8.0 ug/L
IgG 6.26 6.00-16.00
IgA 0.57 0.54-4.17 g/l
IgM 0.46 0.30-2.30 g/l
Alpha 1 3.2 2.0-4.0 g/l
Alpha 7.8 5.0-9.0 g/l
Beta 1 3.8 3.0-6.0 g/l
Beta 2 2.4 2.0-5.0 g/l
Gamma 6.1 6.0-16.0 g/l
Total protein 62 60-80 g/l
Serum protein electrophoresis does not suggest a monoclonal pattern monoclonal light chain lambda detected
C reactive protein 3.3 <6.0 mgl
Low hepatitis B <^2.0
Free kappa 8.8 3.3-19.4 mg/l
Free lambda 1174.8 mg/l
Kappa/lambda ratio 0.01 0.26-1.65
Sodium 139 135-145 mmol/L
Potassium 5.0 3.5-5.2 mmol/L
Chloride 100 98.108 mmol/L
Creatine 83 50-100
eGFR rate 66
First of all, I am in Canada, so they may use different units.
Here are some more of my test results. Maybe they will help to shed some light on the tests.
Urine chemistry
Protein urine H 0.17 <0.15 g/l
Albumin (Urine) <0.05 g/l
Alpha 1 <0.05 g/l
Alpha 2 <0.05 g/l
Beta <0.09 g/l
A discrete band was found in the beta region
Gamma <0.05 g/l
Immonofixation Urine
Protein H0.17
Immunofixation urine monoclonal free lights (Bence Jones protein) detected
Growth Hormone H 8.3 <8.0 ug/L
IgG 6.26 6.00-16.00
IgA 0.57 0.54-4.17 g/l
IgM 0.46 0.30-2.30 g/l
Alpha 1 3.2 2.0-4.0 g/l
Alpha 7.8 5.0-9.0 g/l
Beta 1 3.8 3.0-6.0 g/l
Beta 2 2.4 2.0-5.0 g/l
Gamma 6.1 6.0-16.0 g/l
Total protein 62 60-80 g/l
Serum protein electrophoresis does not suggest a monoclonal pattern monoclonal light chain lambda detected
C reactive protein 3.3 <6.0 mgl
Low hepatitis B <^2.0
Free kappa 8.8 3.3-19.4 mg/l
Free lambda 1174.8 mg/l
Kappa/lambda ratio 0.01 0.26-1.65
Sodium 139 135-145 mmol/L
Potassium 5.0 3.5-5.2 mmol/L
Chloride 100 98.108 mmol/L
Creatine 83 50-100
eGFR rate 66
Re: Lambda FLC very high; has my MGUS progressed?
OK, so it sounds like you have a "light chain restricted" monoclonal gammopathy. In other words, you don't have an "M-spike" that is producing monoclonal heavy chains such as monoclonal IgG, but you are producing monoclonal free light chains. This happens in about 15-20% of patients with a monoclonal gammopathy and does not signify anything worse than having a "regular" monoclonal gammopathy.
The good news is that your increased free light chain levels does not appear to have impacted your kidney function (which is reflected by your normal creatinine and eGFR levels). High levels of free light chains can potentially cause kidney impairment, so this is something to keep an eye on.
Again, I would encourage you to seek out a myeloma specialist in your area.
The good news is that your increased free light chain levels does not appear to have impacted your kidney function (which is reflected by your normal creatinine and eGFR levels). High levels of free light chains can potentially cause kidney impairment, so this is something to keep an eye on.
Again, I would encourage you to seek out a myeloma specialist in your area.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Lambda FLC very high; has my MGUS progressed?
Thanks for your time.
I am seeing a hematologist in the near future to go over the test results.
jessitaylor
I am seeing a hematologist in the near future to go over the test results.
jessitaylor
Re: Lambda FLC very high; has my MGUS progressed?
Hi Jessitaylor,
You should read the article I referenced in this post in a separate forum thread.
There are several parts in the article related to light chain MGUS.
Take care,
Ruben
You should read the article I referenced in this post in a separate forum thread.
There are several parts in the article related to light chain MGUS.
Take care,
Ruben
-
Ruben_1980 - Name: Ruben_1980
- Who do you know with myeloma?: I have (lambda) Light Chain MGUS
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 36
Re: Lambda FLC very high; has my MGUS progressed?
Good afternoon everyone,
I thought I would give an update and walk through this wilh everyone else who have the same concerns.
I saw my hematologist/oncologist yesterday, and he said my free light chains is a very high number and needed some investigation. He talked about multiple myeloma and amylodosis. Spoke a little about the process of the diseases.
After reviewing my initial blood work, I was sent for a second round, this time 10 viles. His assistant told me my doctor checks you for everything once you are with him.
I also received a punch fat biopsy in my stomach area, I had a bone marrow biopsy and extraction done as well (really wasn't bad).
Then I went for a chest X-ray, ECG, ultrasound of the heart, and I am still to do the 24-hour urine sample. Has he missed anything I should consider asking for?
I don't get my results until June 20. We really didn't get into treatment but he said it was very similar for both. If nothing shows he said he would do some more genetic testing chromosomal testing.
I am exhausted from a long day, this kind of stress can wear you out, but I'm still hopeful to having the facts just in case it's a positive outcome and putting together a plan for my future, being proactive in my own health.
I thought I would post for newcomers to review if they are at this stage and what they could expect for themselves.
Jessi
I thought I would give an update and walk through this wilh everyone else who have the same concerns.
I saw my hematologist/oncologist yesterday, and he said my free light chains is a very high number and needed some investigation. He talked about multiple myeloma and amylodosis. Spoke a little about the process of the diseases.
After reviewing my initial blood work, I was sent for a second round, this time 10 viles. His assistant told me my doctor checks you for everything once you are with him.
I also received a punch fat biopsy in my stomach area, I had a bone marrow biopsy and extraction done as well (really wasn't bad).
Then I went for a chest X-ray, ECG, ultrasound of the heart, and I am still to do the 24-hour urine sample. Has he missed anything I should consider asking for?
I don't get my results until June 20. We really didn't get into treatment but he said it was very similar for both. If nothing shows he said he would do some more genetic testing chromosomal testing.
I am exhausted from a long day, this kind of stress can wear you out, but I'm still hopeful to having the facts just in case it's a positive outcome and putting together a plan for my future, being proactive in my own health.
I thought I would post for newcomers to review if they are at this stage and what they could expect for themselves.
Jessi
29 posts
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