I was diagnosed with severe multiple myeloma in December of 2012. My diagnosis was IgG kappa light chain del(17p) multiple myeloma. My myeloma cells accounted for 88% of my plasma cells. I had plasmacytomas in my spine, cranium, hips, etc. In addition, I had a really nasty systemic infection and I was essentially immobile. No one really expected me to leave the hospital alive.
But I did survive, and after 4 cycles of Revlimid, Velcade, and dexamethasone (RVD), I rallied and then had a stem cell transplant in June of 2013.
For about the next 1 1/2 years I continued with a very good partial response (VGPR). But then I relapsed, had radiation, tried most of the drug protocols available to me, up to and including Darzalex (daratumumab), Pomalyst, and dexamethasone (DPD), which failed, as well as multiple full body MRIs, radiation, kyphoplasty, etc.. Then went on Empliciti (elotuzumab) around the 3rd week of June. Hallelujah! My numbers began to improve.
So here's my current question: I just got my latest blood test results and my CBC was brilliant. My concern is that my Immunoglobulin levels are ALL well below the normal range. Yes, even my IgG. OK, I just realized that's not exactly accurate, my IgG is just below the bottom of normal. But my IgA and IgM, which had always been below normal, also continue to decrease.
Have we gone too far? I've never heard of this scenario before:
Component Your Value Standard Range
IgG 701.0 mg/dl 751 - 1560 mg/dl
IgA 24.4 mg/dl 69 - 309 mg/dl
IgM 18.3 mg/dl 48 - 274 mg/dl
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?
Dan:
Since diagnosis in October 2015, my wife's numbers listed below have hovered near;
IgA: 7 mg/dl
IgG: 169 mg/dl
IgM: <4 mg/dl
Admittedly, these numbers appear frightfully low. However, she's only been "sick" twice since diagnosis, and recovered rapidly in each case. We continue to lead a normal life, with frequent travel and no limit on social interaction. Only caveat being that if out in public and someone appears "sick," we will move away. Other than being fanatical hand washers, she appears absolutely normal from the outside looking in. Her doctor is not overly concerned and says that the immune system is very complex, with the immunoglobulins being just part of the puzzle.
On maintenance therapy now and numbers appear to be SLOWLY rebounding.
Brett
Since diagnosis in October 2015, my wife's numbers listed below have hovered near;
IgA: 7 mg/dl
IgG: 169 mg/dl
IgM: <4 mg/dl
Admittedly, these numbers appear frightfully low. However, she's only been "sick" twice since diagnosis, and recovered rapidly in each case. We continue to lead a normal life, with frequent travel and no limit on social interaction. Only caveat being that if out in public and someone appears "sick," we will move away. Other than being fanatical hand washers, she appears absolutely normal from the outside looking in. Her doctor is not overly concerned and says that the immune system is very complex, with the immunoglobulins being just part of the puzzle.
On maintenance therapy now and numbers appear to be SLOWLY rebounding.
Brett
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Gcsi - Name: Brett
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: Oct 2, 2015 (MGUS 2002)
- Age at diagnosis: 62
Re: Are my immunoglobulin levels too low?
Brett
Thanks for the response. Yes, your wife's numbers do seem frightfully low!
What drug protocol is she on? How are her CBC values, especially her RBC, HGB, HCT, and WBC?
multiple myeloma is such a complex disease. I've spent the last 3 1/2 years worrying about my IgG being too high and constantly seeking a protocol that would lower it. So trying to wrap my mind around it being too low is perplexing and disconcerting...
My best to you and your wife,
Daniel
Thanks for the response. Yes, your wife's numbers do seem frightfully low!
What drug protocol is she on? How are her CBC values, especially her RBC, HGB, HCT, and WBC?
multiple myeloma is such a complex disease. I've spent the last 3 1/2 years worrying about my IgG being too high and constantly seeking a protocol that would lower it. So trying to wrap my mind around it being too low is perplexing and disconcerting...
My best to you and your wife,
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?
Dan:
All of her CBC numbers are normal. She's on Velcade and dexamethasone maintenance therapy.
All of her CBC numbers are normal. She's on Velcade and dexamethasone maintenance therapy.
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Gcsi - Name: Brett
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: Oct 2, 2015 (MGUS 2002)
- Age at diagnosis: 62
Re: Are my immunoglobulin levels too low?
Hi DanielR,
It sounds like you have really been through the mill, but that you've turned the corner on a really bad situation.
It is not that unusual for people with multiple myeloma to show greatly suppressed immunoglobulin levels. Usually, the uninvolved immunoglobulins are affected most greatly. The phenomenon is called "immunoparesis", and is an effect of the drugs given for treatment.
It can put you at greater risk for infection, for which the treatment is regular IVIG infusions.
I actually have immunoparesis myself and get IVIG once a month, which has successfully kept infections at bay.
I believe Dr. Libby and/or others have commented on immunoparesis on the Forum.
I wish you continued good luck on your treatment!
It sounds like you have really been through the mill, but that you've turned the corner on a really bad situation.
It is not that unusual for people with multiple myeloma to show greatly suppressed immunoglobulin levels. Usually, the uninvolved immunoglobulins are affected most greatly. The phenomenon is called "immunoparesis", and is an effect of the drugs given for treatment.
It can put you at greater risk for infection, for which the treatment is regular IVIG infusions.
I actually have immunoparesis myself and get IVIG once a month, which has successfully kept infections at bay.
I believe Dr. Libby and/or others have commented on immunoparesis on the Forum.
I wish you continued good luck on your treatment!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Are my immunoglobulin levels too low?
Thanks MrPotatoHead
I'm still a little confused here. My working understanding of immunoglobulin levels as they relate to multiple myeloma is that one of the 3 primary involved immunobulinss was high, while the remaining 2 were low. In my case, my IgG has always been elevated and my IgM and IgA have always been depressed.
According to the definition I looked up, my understanding seemed accurate: "Immunoparesis is defined as a reduction (below the lower normal limit) in the levels of 1 or 2 immunoglobulin (Ig), with respect to the values of the corresponding uninvolved Ig"
I couldn't find any source that indicated that all 3 of the most commonly involved immunoglobulins being below normal was still referred to as immunoparesis, though admittedly, I couldn't find what a suppression of all 3 would be referred to, perhaps, as I think you've suggested, a suppression of all 3 is still called by the same term?
I couldn't find any threads in The Beacon that addressed this question specifically.
Thanks
Daniel
I'm still a little confused here. My working understanding of immunoglobulin levels as they relate to multiple myeloma is that one of the 3 primary involved immunobulinss was high, while the remaining 2 were low. In my case, my IgG has always been elevated and my IgM and IgA have always been depressed.
According to the definition I looked up, my understanding seemed accurate: "Immunoparesis is defined as a reduction (below the lower normal limit) in the levels of 1 or 2 immunoglobulin (Ig), with respect to the values of the corresponding uninvolved Ig"
I couldn't find any source that indicated that all 3 of the most commonly involved immunoglobulins being below normal was still referred to as immunoparesis, though admittedly, I couldn't find what a suppression of all 3 would be referred to, perhaps, as I think you've suggested, a suppression of all 3 is still called by the same term?
I couldn't find any threads in The Beacon that addressed this question specifically.
Thanks
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?
It is my understanding that if all 3 immunoglobulins are depressed, that it is a function of bone marrow suppression. It is also an indication that the immune system is not functioning normal in so far as being able to ward off viral infections. The suppression can be a result of multiple myeloma, but also a side effect of treatment.
IVIG infusions are often given if an individual has suppressed Immunoglobulin function and has been susceptible to viral infections. Like Mr. Potatohead, I also receive IVIG on a monthly basis. The IVIG treatment resulted in an immediate increase in the immunoglobulin levels and an avoidance of infections. I had suffered with viral meningitis back in 2012, but have not had any serious infections (one minor sinus infection) since.
IVIG infusions are often given if an individual has suppressed Immunoglobulin function and has been susceptible to viral infections. Like Mr. Potatohead, I also receive IVIG on a monthly basis. The IVIG treatment resulted in an immediate increase in the immunoglobulin levels and an avoidance of infections. I had suffered with viral meningitis back in 2012, but have not had any serious infections (one minor sinus infection) since.
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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: Are my immunoglobulin levels too low?
I think there may be some confusion here about what the word "involved" means when it comes to immunoglobulin levels in people with multiple myeloma, and also what exactly "light chain" multiple myeloma is.
Daniel - You wrote in the first post in this thread that you have " IgG kappa light chain" multiple myeloma. To me, that's a confusing description, because someone with light chain multiple myeloma by definition has only an elevated kappa or lambda free light chain level; they don't have an M-spike, which means they don't have measurable levels of monoclonal IgA, IgG, or IgM.
So adding "IgA" or "IgG" or "IgM" to the description of someone's disease when they have light chain myeloma doesn't make sense.
Or am I missing something?
This is relevant because talking about a myeloma patient's "involved" immunoglobulin only makes sense if they do not have light chain myeloma. If you have light chain myeloma, by definition you do not have an involved immunoglobulin.
Daniel - You wrote in the first post in this thread that you have " IgG kappa light chain" multiple myeloma. To me, that's a confusing description, because someone with light chain multiple myeloma by definition has only an elevated kappa or lambda free light chain level; they don't have an M-spike, which means they don't have measurable levels of monoclonal IgA, IgG, or IgM.
So adding "IgA" or "IgG" or "IgM" to the description of someone's disease when they have light chain myeloma doesn't make sense.
Or am I missing something?
This is relevant because talking about a myeloma patient's "involved" immunoglobulin only makes sense if they do not have light chain myeloma. If you have light chain myeloma, by definition you do not have an involved immunoglobulin.
Re: Are my immunoglobulin levels too low?
DanielR-
I did a Google search on "immunoparesis", and had the same experience you did – all references to it defined the word as referring to a condition in which the "uninvolved" immunoglobulins are suppressed, but the "involved" was not.
I was using Dr. Libby's definition (posted on the Myeloma Beacon Forum by Kay under "immunoparesis" -- do a Forum search on immunoparesis to see it; I'm not sure how one directly posts a link to another Forum post), in which he just defines it as being a condition in which one's immunoglobulins are suppressed. However, the definition as you state it seems to be the correct one.
I did a Google search on "immunoparesis", and had the same experience you did – all references to it defined the word as referring to a condition in which the "uninvolved" immunoglobulins are suppressed, but the "involved" was not.
I was using Dr. Libby's definition (posted on the Myeloma Beacon Forum by Kay under "immunoparesis" -- do a Forum search on immunoparesis to see it; I'm not sure how one directly posts a link to another Forum post), in which he just defines it as being a condition in which one's immunoglobulins are suppressed. However, the definition as you state it seems to be the correct one.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Are my immunoglobulin levels too low?
Terry,
When I was first diagnosed the immunofixation test revealed a faint IgG kappa marker, but it was not measurable on the serum protein electrophoresis (SPEP) test. However, I had elevated kappa free light chains over 100, and a high ratio in the serum free light chain (sFLC) test. I also had a few small lesions on my hip and femur as well as having some mild anemia. That led to a diagnosis of active Stage II at that time. I was and continue to be tracked primarily with the sFLC test. Not sure if that is considered light chain multiple myeloma or not. Since then, I have developed an M spike, but it is low 0.2 g/dL (2 g/l).
It is my understanding that the immunofixation test is more sensitive than the SPEP in detecting paraproteins. So it is not uncommon that it would show a marker that cannot be measured.
When I was first diagnosed the immunofixation test revealed a faint IgG kappa marker, but it was not measurable on the serum protein electrophoresis (SPEP) test. However, I had elevated kappa free light chains over 100, and a high ratio in the serum free light chain (sFLC) test. I also had a few small lesions on my hip and femur as well as having some mild anemia. That led to a diagnosis of active Stage II at that time. I was and continue to be tracked primarily with the sFLC test. Not sure if that is considered light chain multiple myeloma or not. Since then, I have developed an M spike, but it is low 0.2 g/dL (2 g/l).
It is my understanding that the immunofixation test is more sensitive than the SPEP in detecting paraproteins. So it is not uncommon that it would show a marker that cannot be measured.
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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
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