Terry hmmmm!
OK, I've been on cancer drugs for almost 4 years now so, yes, I'm very prone to forgetting things, or just not understanding what I've heard or read. That being said, I'm fairly confident that my IgG kappa light chain designation is correct only because, when I was first diagnosed and my learning curve seemed insurmountable, I said to my doctor "So I have IgG 17p(del) multiple myeloma, right?" And he very emphatically said no, you have IgG kappa light chain 17p(del) multiple myeloma." He really emphasized the light chain component.
None of the many doctors or staff I've talked to over the years has ever contradicted that initial diagnosis, and I've had an M-spike and very elevated IgG with depressed IgM and IgA from day 1. If your understanding is correct, well, I'll have to reformulate everything I thought I knew!
Daniel
Forums
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Are my immunoglobulin levels too low?
Ron - I thought about situations such as yours when I wrote my earlier posting. I think even in those situations, most doctors would do what I believe you've usually done when describing your disease type, which is to call it "kappa light chain multiple myeloma." I also agree that the immunofixation test is more sensitive than the SPEP in picking up monoclonal proteins. I've seen one estimate that immunofixation test is about 10 times more accurate than the SPEP test in detecting the presence of a monoclonal immunoglobulin.
Daniel - I checked a couple of your previous postings, and you mention in at least one of them that your M-spike was really high at diagnosis. This also fits with what you've said about your IgG level being very high before and during your treatment. It was probably high because of high levels of monoclonal IgG.
If all of that is true, then I don't see any way that your disease could be described as light chain multiple myeloma. You will find definitions all over the internet saying that light chain multiple myeloma is multiple myeloma where the patient's disease produces only monoclonal light chains – i.e., monoclonal kappa or lambda light chains. See, for example, this government report, which states:
"Whereas monoclonal plasma cells generally secrete intact immunoglobulin, in about 20 percent of patients with multiple myeloma these cells only produce light-chain monoclonal proteins (i.e., light-chain multiple myeloma [LCMM], formerly known as Bence Jones myeloma) and in 3 percent of patients they secrete neither light- nor heavy-chain monoclonal proteins that are detectable by immunofixation (i.e., nonsecretory multiple myeloma [NSMM])."
It appears that your disease should have been described as just IgG kappa multiple myeloma.
Daniel - I checked a couple of your previous postings, and you mention in at least one of them that your M-spike was really high at diagnosis. This also fits with what you've said about your IgG level being very high before and during your treatment. It was probably high because of high levels of monoclonal IgG.
If all of that is true, then I don't see any way that your disease could be described as light chain multiple myeloma. You will find definitions all over the internet saying that light chain multiple myeloma is multiple myeloma where the patient's disease produces only monoclonal light chains – i.e., monoclonal kappa or lambda light chains. See, for example, this government report, which states:
"Whereas monoclonal plasma cells generally secrete intact immunoglobulin, in about 20 percent of patients with multiple myeloma these cells only produce light-chain monoclonal proteins (i.e., light-chain multiple myeloma [LCMM], formerly known as Bence Jones myeloma) and in 3 percent of patients they secrete neither light- nor heavy-chain monoclonal proteins that are detectable by immunofixation (i.e., nonsecretory multiple myeloma [NSMM])."
It appears that your disease should have been described as just IgG kappa multiple myeloma.
Re: Are my immunoglobulin levels too low?
Terry,
It's taken me a long time to respond because you've brought up an issue that has long been confusing to me. Here's where I'm at currently. You wrote:
My understanding is that there are two types of light chains referred to as kappa and lambda.
So if I combine what you wrote with my understanding, I end up thinking that my nomenclature was not wrong, but perhaps redundant.
In other words, since both kappa and lambda are both light chains, it would be unnecessary to call IgG kappa light chain multiple myeloma, just as it would be unnecessary to call IgG lambda light chain multiple myeloma. Since both are light chain, IgG kappa multiple myeloma or IgG lambda would be sufficient.
Is my understanding on this correct? Or am I still missing something?
Aloha,
DR
It's taken me a long time to respond because you've brought up an issue that has long been confusing to me. Here's where I'm at currently. You wrote:
"It appears that your disease should have been described as just IgG kappa multiple myeloma"
My understanding is that there are two types of light chains referred to as kappa and lambda.
So if I combine what you wrote with my understanding, I end up thinking that my nomenclature was not wrong, but perhaps redundant.
In other words, since both kappa and lambda are both light chains, it would be unnecessary to call IgG kappa light chain multiple myeloma, just as it would be unnecessary to call IgG lambda light chain multiple myeloma. Since both are light chain, IgG kappa multiple myeloma or IgG lambda would be sufficient.
Is my understanding on this correct? Or am I still missing something?
Aloha,
DR
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Are my immunoglobulin levels too low?
Hi Daniel,
Light chain multiple myeloma is a very specific form of multiple myeloma -- one that only about 15-20 percent of multiple myeloma patients have. The words "light chain" are not just something you include in the type description for every person with multiple myeloma.
Perhaps this description of what light chain multiple myeloma will be more clear than what I wrote earlier.
Let's start with the basics.
All people with multiple myeloma have mutated plasma cells. The mutant plasma cells are clones of an original mutated plasma cell, which is why the mutated plasma cells are usually described as "clonal plasma cells".
Plasma cells produce the immunoglobulins (IgA, IgG, IgM, etc.) that help the body defend itself against infection. Plasma cells also produce free light chain molecules -- the kappa and lambda molecules you mentioned in your post.
In most myeloma patients -- about 80 to 85 percent of newly diagnosed patients -- the myeloma plasma cells produce one type of immunoglobulin (e.g., IgG) and one type of free light chain (e.g., lambda). With these patients, you can track their disease using both the M-spike -- which measures how much clonal immunoglobulin is present in the blood -- and free light chain levels and ratio.
So a patient with IgG lambda multiple myeloma, for example, has an M-spike that is caused by excess, clonal production of IgG, and excess production of the lambda free light chain.
About 15-20 percent of newly diagnosed myeloma patients, on the other hand, have "light chain multiple myeloma". They have myeloma cells that do not produce excess amounts of an immunoglobulin. Their myeloma cells produce only excess kappa or lambda free light chains.
So light chain multiple myeloma patients do not have an M-spike, Their disease can only be tracked by measuring their free light chain levels.
There is a final category of patients with "nonsecretory" multiple myeloma. These patients have myeloma cells that do not produce either clonal immunoglobulins or clonal free light chains. About 2-3% of newly diagnosed patients have nonsecretory disease.
To summarize:
"Standard" myeloma patients - disease trackable with M-spike and free light chain results
Light chain myeloma patients - no M-spike; disease trackable only with free light chain results
Nonsecretory myeloma - no M-spike, no excess free light chain production
I hope this helps clarify things a bit. Good luck!
P.S. - There's also a type of myeloma called oligosecretory myeloma. People with this forum of the disease have plasma cells that produce very, very low levels of an immunoglobulin and/or light chain. The levels are detectable, but are not very high -- even when the patient has a lot of myeloma cells in their bone marrow.
Light chain multiple myeloma is a very specific form of multiple myeloma -- one that only about 15-20 percent of multiple myeloma patients have. The words "light chain" are not just something you include in the type description for every person with multiple myeloma.
Perhaps this description of what light chain multiple myeloma will be more clear than what I wrote earlier.
Let's start with the basics.
All people with multiple myeloma have mutated plasma cells. The mutant plasma cells are clones of an original mutated plasma cell, which is why the mutated plasma cells are usually described as "clonal plasma cells".
Plasma cells produce the immunoglobulins (IgA, IgG, IgM, etc.) that help the body defend itself against infection. Plasma cells also produce free light chain molecules -- the kappa and lambda molecules you mentioned in your post.
In most myeloma patients -- about 80 to 85 percent of newly diagnosed patients -- the myeloma plasma cells produce one type of immunoglobulin (e.g., IgG) and one type of free light chain (e.g., lambda). With these patients, you can track their disease using both the M-spike -- which measures how much clonal immunoglobulin is present in the blood -- and free light chain levels and ratio.
So a patient with IgG lambda multiple myeloma, for example, has an M-spike that is caused by excess, clonal production of IgG, and excess production of the lambda free light chain.
About 15-20 percent of newly diagnosed myeloma patients, on the other hand, have "light chain multiple myeloma". They have myeloma cells that do not produce excess amounts of an immunoglobulin. Their myeloma cells produce only excess kappa or lambda free light chains.
So light chain multiple myeloma patients do not have an M-spike, Their disease can only be tracked by measuring their free light chain levels.
There is a final category of patients with "nonsecretory" multiple myeloma. These patients have myeloma cells that do not produce either clonal immunoglobulins or clonal free light chains. About 2-3% of newly diagnosed patients have nonsecretory disease.
To summarize:
"Standard" myeloma patients - disease trackable with M-spike and free light chain results
Light chain myeloma patients - no M-spike; disease trackable only with free light chain results
Nonsecretory myeloma - no M-spike, no excess free light chain production
I hope this helps clarify things a bit. Good luck!
P.S. - There's also a type of myeloma called oligosecretory myeloma. People with this forum of the disease have plasma cells that produce very, very low levels of an immunoglobulin and/or light chain. The levels are detectable, but are not very high -- even when the patient has a lot of myeloma cells in their bone marrow.
Re: Are my immunoglobulin levels too low?
Terry
Thanks so much for the detailed explanation!
It seems like I should have known this.
Daniel
Thanks so much for the detailed explanation!
It seems like I should have known this.
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Are my immunoglobulin levels too low?
This discussion seems to have gotten a little off track. I was going to pose a similar question about immunoglobulin levels. When I was diagnosed with multiple myeloma, my levels were
IgA 17
IgG 5842
IgM 8.
I am now 5 cycles into treatment with Revlimid, Velcade, and dexamethasone (RVD). I am in remission, M protein 0.03 g/dL (0.3 g/l) (yay!). Now my levels are
IgA 33
IgG 720
IgM 17.
My IgA actually dropped a little since last check. My IgM has been at 17 for the last 2 cycles.
My oncologist who is not a myeloma specialist says she doesn't know why.
Has anyone else had this experience and, if so, do you have a reason. I kind of expected as my IgG went down the other 2 would come up at a similar rate.
IgA 17
IgG 5842
IgM 8.
I am now 5 cycles into treatment with Revlimid, Velcade, and dexamethasone (RVD). I am in remission, M protein 0.03 g/dL (0.3 g/l) (yay!). Now my levels are
IgA 33
IgG 720
IgM 17.
My IgA actually dropped a little since last check. My IgM has been at 17 for the last 2 cycles.
My oncologist who is not a myeloma specialist says she doesn't know why.
Has anyone else had this experience and, if so, do you have a reason. I kind of expected as my IgG went down the other 2 would come up at a similar rate.
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Memakes4 - Name: Nancy
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 69
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