I am anxiously waiting my first appointment with the oncologist tomorrow. My primary wasn't sure what to make of my results and this was the assessment he made when referring me out: Lambda light chain disease.
Little back story, I went in to see my primary for feelings of fatigue, constant low back pain, nausea that I have trouble shaking, infections that just seem to linger, just overall blah. He ran some blood work and found my protein levels were elevated. Did another test and sure enough it was still elevated, but there were more results that came with it. This is what my doctor was concerned about:
Immunofixation result: shows IgG monoclonal protein with lambda light chain specificity
Protein monoclonal spike: 2.9 g/dL (mentioned high but no reference range)
Globulin 4.8 g/dL high (2.2-3.9)
IgA total 73 mg/dL low (87-352)
IgG total 4042 mg/dL high (700-1600)
B-globulin 3.8 high (0.7-1.3)
These were normal:
IgM total 44 mg/dL (26-217)
A1 Globulin 0.1 (0.0-0.4)
A2 Globulin 0.6 (0.4-1)
He was trying to explain to me what all these meant but I was so stressed that all I heard was "I'm sending you for further testing".
Do these results suggest MGUS or smoldering myeloma? They dosn't scream myeloma and my PCP assured me that, but they are obviously concerning enough to where he is sending me to a oncologist-hematologist.
Thank you in advance!
Malia
Forums
Re: Is it MGUS or smoldering multiple myeloma?
Had my appointment and the oncologist is having me do an MRI, 24-hour urine, and bone marrow biopsy. He doesn’t have a definitive diagnosis, but he did say he’s testing to see if it’s MGUS or multiple myeloma. I’m nervous and scared either way. All I can think is of my children, especially my 8 year old. 
-
maliah - Name: MaliaH
Re: Is it MGUS or smoldering multiple myeloma?
Hi Malia,
There is no "normal" range for an M-spike. Someone who does not have MGUS or multiple myeloma does not have an M-spike; the "normal" or "reference" level for an M-spike is 0.
One of the criteria for determining whether you have MGUS or smoldering myeloma is the level of your M-spike. If it is 3.0 g/dL (30 g/l) or higher, then the diagnosis cannot be MGUS; it is either smoldering myeloma or multiple myeloma.
Your doctor is doing the right thing to be ordering an MRI (to check for potential bone lesions) and also a bone marrow biopsy (to check the plasma cell percentage in your bone marrow). These are some of the factors that, in addition to your M-spike, play a role in the proper diagnosis -- and potential treatment -- of what you have.
Have you also had a serum (blood) free light chain test done? That would be helpful. This is the test that reports kappa and lambda levels and the kappa-lambda ratio.
Also, what are your hemoglobin, calcium, and creatinine levels? Those also will play a role in your diagnosis.
I think it would really help you understand what tests are necessary to determine your diagnosis if you read through these summaries of the diagnostic criteria for multiple myeloma, smoldering myeloma, and MGUS:
Diagnostic criteria for (symptomatic / active) multiple myeloma
Diagnostic criteria for smoldering multiple myeloma
Diagnostic criteria for MGUS
Each of the above three posts is "pinned" to the top of this part of the forum.
Also, it's useful to think of MGUS and myeloma as being on a spectrum. On one end is MGUS, which often does not progress to the point of requiring treatment, and which can go unnoticed in many people with the condition. On the other end of the spectrum is multiple myeloma, which is a cancer that requires treatment, and which can cause serious damage to the body. In between is smoldering myeloma, which generally is not treated, but which often (but not always) progresses to multiple myeloma.
Good luck!
There is no "normal" range for an M-spike. Someone who does not have MGUS or multiple myeloma does not have an M-spike; the "normal" or "reference" level for an M-spike is 0.
One of the criteria for determining whether you have MGUS or smoldering myeloma is the level of your M-spike. If it is 3.0 g/dL (30 g/l) or higher, then the diagnosis cannot be MGUS; it is either smoldering myeloma or multiple myeloma.
Your doctor is doing the right thing to be ordering an MRI (to check for potential bone lesions) and also a bone marrow biopsy (to check the plasma cell percentage in your bone marrow). These are some of the factors that, in addition to your M-spike, play a role in the proper diagnosis -- and potential treatment -- of what you have.
Have you also had a serum (blood) free light chain test done? That would be helpful. This is the test that reports kappa and lambda levels and the kappa-lambda ratio.
Also, what are your hemoglobin, calcium, and creatinine levels? Those also will play a role in your diagnosis.
I think it would really help you understand what tests are necessary to determine your diagnosis if you read through these summaries of the diagnostic criteria for multiple myeloma, smoldering myeloma, and MGUS:
Diagnostic criteria for (symptomatic / active) multiple myeloma
Diagnostic criteria for smoldering multiple myeloma
Diagnostic criteria for MGUS
Each of the above three posts is "pinned" to the top of this part of the forum.
Also, it's useful to think of MGUS and myeloma as being on a spectrum. On one end is MGUS, which often does not progress to the point of requiring treatment, and which can go unnoticed in many people with the condition. On the other end of the spectrum is multiple myeloma, which is a cancer that requires treatment, and which can cause serious damage to the body. In between is smoldering myeloma, which generally is not treated, but which often (but not always) progresses to multiple myeloma.
Good luck!
-
JimNY
Re: Is it MGUS or smoldering multiple myeloma?
Thank you for breaking it down for me. I think I’m just under stress already that adding all this on top of it made the comprehension of it all more challenging. I’ll delve into those links more as well.
I haven’t had the serum free light chain test done, but my doctor did have me do more blood work to see where I’m at. As far as the hemoglobin, calcium, and creatinine levels, they were all within range. Hemoglobin at 12.9, calcium at 9.9, and creatinine 0.8. These were taken three months ago, so doctor had me do more blood work at my appointment. Knowing those fell in the norm was reassuring, but I’ll feel better once I have more definitive answers and a diagnosis.
I haven’t had the serum free light chain test done, but my doctor did have me do more blood work to see where I’m at. As far as the hemoglobin, calcium, and creatinine levels, they were all within range. Hemoglobin at 12.9, calcium at 9.9, and creatinine 0.8. These were taken three months ago, so doctor had me do more blood work at my appointment. Knowing those fell in the norm was reassuring, but I’ll feel better once I have more definitive answers and a diagnosis.
-
maliah - Name: MaliaH
Re: Is it MGUS or smoldering multiple myeloma?
Maliah,
It is a shocking thing to find out, especially with a young child.
The good news is that your standard blood work is normal. Your M-protein is relatively high for an MGUS diagnosis. JimNY is correct, the free light chain test is an important one. The bone marrow biopsy will shed some light too.
Stay strong! Even in the worst case scenario, most people respond well to treatment, achieve remission, and live with multiple myeloma for a very long time.
Good luck!
It is a shocking thing to find out, especially with a young child.
The good news is that your standard blood work is normal. Your M-protein is relatively high for an MGUS diagnosis. JimNY is correct, the free light chain test is an important one. The bone marrow biopsy will shed some light too.
Stay strong! Even in the worst case scenario, most people respond well to treatment, achieve remission, and live with multiple myeloma for a very long time.
Good luck!
-
Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: Is it MGUS or smoldering multiple myeloma?
Dimamar and JimNY,
Thank you both again for your responses. I finally have my appointments for my MRI and bone marrow biopsy and turned in my 24-hour urine specimen this morning. Now the waiting for those tests and results. It's graduation season and we will be traveling for our older children's college and high school graduations. I hope to have answers before then so that I can plan accordingly. Then there's the question of do I tell the rest of the family. My husband knows and a few friends. I guess first things first, get the results and follow up with my oncologist. Then go from there.
Thank you both again for your responses. I finally have my appointments for my MRI and bone marrow biopsy and turned in my 24-hour urine specimen this morning. Now the waiting for those tests and results. It's graduation season and we will be traveling for our older children's college and high school graduations. I hope to have answers before then so that I can plan accordingly. Then there's the question of do I tell the rest of the family. My husband knows and a few friends. I guess first things first, get the results and follow up with my oncologist. Then go from there.
-
maliah - Name: MaliaH
Re: Is it MGUS or smoldering multiple myeloma?
Had my MRI and bone marrow biopsy done. I’ll find out the results on Monday. I noticed in my labs that my serum M-spike went up from 2.9 to 3.1. Not sure if I should be worried about that little jump there.
-
maliah - Name: MaliaH
Re: Is it MGUS or smoldering multiple myeloma?
Maliah,
Good luck with results!
The change in the M-protein from 2.9 to 3.1 is not significant, unless the trend continues.
Was a serum free light chain test done and, if so, what were the results?
Good luck with results!
The change in the M-protein from 2.9 to 3.1 is not significant, unless the trend continues.
Was a serum free light chain test done and, if so, what were the results?
-
Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: Is it MGUS or smoldering multiple myeloma?
Hi Dimamar!
There are numbers for Kappa/Lambda Lt:
Kappa Lt - 103 (reference range 176-443)
Lambda - No number, only “see note” which stated “results are above the clinical reportable range for this analyte, which is 800 mg/dL”
Kappa/Lambda <0.13 (reference range 1.29-2.55)
I also had beta 2 microglobulin that was normal 1.5 mg/L (reference range < or = 2.51 mg/L
My 24-hour urine only had UR Microalb results <0.3 (reference range 0-300 mg/dL).
Tomorrow I find out the results of my bone marrow biopsy and MRI. My husband can’t make it, so I’ll be going in myself. I feel nauseated thinking about it.
There are numbers for Kappa/Lambda Lt:
Kappa Lt - 103 (reference range 176-443)
Lambda - No number, only “see note” which stated “results are above the clinical reportable range for this analyte, which is 800 mg/dL”
Kappa/Lambda <0.13 (reference range 1.29-2.55)
I also had beta 2 microglobulin that was normal 1.5 mg/L (reference range < or = 2.51 mg/L
My 24-hour urine only had UR Microalb results <0.3 (reference range 0-300 mg/dL).
Tomorrow I find out the results of my bone marrow biopsy and MRI. My husband can’t make it, so I’ll be going in myself. I feel nauseated thinking about it.
-
maliah - Name: MaliaH
Re: Is it MGUS or smoldering multiple myeloma?
Hi Malia,
The reference ranges for your results look strange to me.
Here are the reference ranges from my tests:
Kappa Free, Serum 3.30 - 19.40 mg/L
Lambda Free, Serum 5.7 - 26.3 mg/L
800 mg/dl would mean 8,000 mg/L, which is high.
Perhaps, these numbers are misunderstood, or measured in different units.
Anyway, trust me, I know it's easier said than done, but try no not worry too much in anticipation of your test results. It is what it is, you'll find out tomorrow. The worst case scenario is that you'll be recommended treatment. It's by no means pleasant news, but not the end of the world either.
Stay strong and good luck.
The reference ranges for your results look strange to me.
Here are the reference ranges from my tests:
Kappa Free, Serum 3.30 - 19.40 mg/L
Lambda Free, Serum 5.7 - 26.3 mg/L
800 mg/dl would mean 8,000 mg/L, which is high.
Perhaps, these numbers are misunderstood, or measured in different units.
Anyway, trust me, I know it's easier said than done, but try no not worry too much in anticipation of your test results. It is what it is, you'll find out tomorrow. The worst case scenario is that you'll be recommended treatment. It's by no means pleasant news, but not the end of the world either.
Stay strong and good luck.
-
Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
11 posts
• Page 1 of 2 • 1, 2
Return to Do I Have Multiple Myeloma?