"Acquired hypogammaglobulinemia" has been added to my husband's list on his cancer center portal. As far as I can tell from looking it up, it refers to the low gammas and low kappas and lambdas I've been noticing on his blood work. I read that it's a common result or complication of multiple myeloma.
His values last month were:
Gamma globulin - 0.3 g/dL (0.4-1.8)
Kappa light chain, free) - 1.4 mg/L (3.3-19.4)
Lambda light chain, free - 2.6 mg/L (5.7-26.3)
We haven't gotten this month's yet. These values have been low for months, I noticed when I looked back.
Does this go away, get worse, whatever? What are the implications of it?
Thanks!
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Does acquired hypogammaglobulinemia go away?
Hi vmeyer,
In case you haven't seen them already, there are some other forum threads on the topic of hypogammaglobulinemia with information that you may find helpful. Some of them have feedback from the Beacon's medical advisors.
Good luck!
In case you haven't seen them already, there are some other forum threads on the topic of hypogammaglobulinemia with information that you may find helpful. Some of them have feedback from the Beacon's medical advisors.
Good luck!
Re: Does acquired hypogammaglobulinemia go away?
Thank you for recommending the other threads! I should have searched there to begin with!
At least I feel I'm beginning to understand the condition more thoroughly, especially as I was puzzled by the fact that my husband doesn't seem to be catching every bug that comes along. I understand now from the doctor who replied to one of the posts that this is often the case, but that the person tends to catch the more major things and not fight them off well. Now I know what to watch for.
In some particulars my husband is different from most of those who posted about the problem. He has multiple myeloma with the M-spike in the Beta-1 band, refractory to Revlimid, Velcade, and dexamethasone (RVD), and his disease did not respond to Empliciti, and with the M-spike plateauing at about 0.5 g/dL with single-agent Darzalex, which he's taken for about 21 months now. He has chosen not to have a stem cell transplant, and his doctor has not pushed for it. For the last few months, his M-spike has been creeping up steadily, but is only up to 0.9 g/dL as of last month, so his oncologist isn't concerned yet. He did not mention the hypogammaglobulinemia, just posted it on the portal page as a concurrent condition with a diagnosis date of September 1, 2018.
In reading the posts, I still haven't found out whether this is a permanent condition or one that may resolve in time, so any further feedback on that issue would be appreciated.
At least I feel I'm beginning to understand the condition more thoroughly, especially as I was puzzled by the fact that my husband doesn't seem to be catching every bug that comes along. I understand now from the doctor who replied to one of the posts that this is often the case, but that the person tends to catch the more major things and not fight them off well. Now I know what to watch for.
In some particulars my husband is different from most of those who posted about the problem. He has multiple myeloma with the M-spike in the Beta-1 band, refractory to Revlimid, Velcade, and dexamethasone (RVD), and his disease did not respond to Empliciti, and with the M-spike plateauing at about 0.5 g/dL with single-agent Darzalex, which he's taken for about 21 months now. He has chosen not to have a stem cell transplant, and his doctor has not pushed for it. For the last few months, his M-spike has been creeping up steadily, but is only up to 0.9 g/dL as of last month, so his oncologist isn't concerned yet. He did not mention the hypogammaglobulinemia, just posted it on the portal page as a concurrent condition with a diagnosis date of September 1, 2018.
In reading the posts, I still haven't found out whether this is a permanent condition or one that may resolve in time, so any further feedback on that issue would be appreciated.
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Does acquired hypogammaglobulinemia go away?
Hello,
I have had immunoparesis (hypogammaglobulinemia) since diagnosis in 2014 and treatment has not improved my numbers. I asked both of my doctors if an autologous stem cell transplant would help my immune system because I am IVIG dependent, and I was told that it would not, so I opted to not have a stem cell transplant. However, I believe an allogeneic (donor) stem transplant might be able to correct the hypogammaglobulinemia.
Best
J
I have had immunoparesis (hypogammaglobulinemia) since diagnosis in 2014 and treatment has not improved my numbers. I asked both of my doctors if an autologous stem cell transplant would help my immune system because I am IVIG dependent, and I was told that it would not, so I opted to not have a stem cell transplant. However, I believe an allogeneic (donor) stem transplant might be able to correct the hypogammaglobulinemia.
Best
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Does acquired hypogammaglobulinemia go away?
Hi vmeyer,
From some of your previous posts, I'm guessing that your husband is currently being treated for his multiple myeloma, possibly with Darzalex.
I believe acquired (or secondary) hypogammaglobulinemia is being seen more frequently in myeloma patients these days, particularly after treatment with Darzalex. I think it's more a result of treatment, rather than a result of the myeloma. What that means is that it's likely to continue as long as your husband is on his current treatment at the current dose that he's receiving.
There's a study that's been done about giving myeloma patients immunoglobulin injections if they have hypogammaglobulinemia. It shows that the injections reduce the frequency of severe infections. So this is something you may want to discuss with your husband's doctors. (See the link to the study below.)
I don't think, by the way, that "hypogammaglobulinemia" and "immunoparesis" are truly the same. Hypogammaglobulinemia is when all immunoglobulins are below normal levels, including a patient's "involved" immunoglobulin. Immunoparesis is when all immunoglobulins other than the involved immunoglobulin are below normal.
I know that even doctors sometimes use the two interchangeably, but I believe they technically are not the same thing.
Here's a link to the study I mentioned:
https://www.sciencedirect.com/science/article/pii/S1521661617306332
From some of your previous posts, I'm guessing that your husband is currently being treated for his multiple myeloma, possibly with Darzalex.
I believe acquired (or secondary) hypogammaglobulinemia is being seen more frequently in myeloma patients these days, particularly after treatment with Darzalex. I think it's more a result of treatment, rather than a result of the myeloma. What that means is that it's likely to continue as long as your husband is on his current treatment at the current dose that he's receiving.
There's a study that's been done about giving myeloma patients immunoglobulin injections if they have hypogammaglobulinemia. It shows that the injections reduce the frequency of severe infections. So this is something you may want to discuss with your husband's doctors. (See the link to the study below.)
I don't think, by the way, that "hypogammaglobulinemia" and "immunoparesis" are truly the same. Hypogammaglobulinemia is when all immunoglobulins are below normal levels, including a patient's "involved" immunoglobulin. Immunoparesis is when all immunoglobulins other than the involved immunoglobulin are below normal.
I know that even doctors sometimes use the two interchangeably, but I believe they technically are not the same thing.
Here's a link to the study I mentioned:
https://www.sciencedirect.com/science/article/pii/S1521661617306332
Re: Does acquired hypogammaglobulinemia go away?
CherylG,
That's really interesting. I looked back and indeed, this seems to have begun a few months after his Darzalex treatment began, even though he had been treated for about a year prior with other drugs.
Darzalex seems to be working to some extent at present, and Ed has not caught any serious illnesses so far, so I suspect he will want to just leave it alone for now. It's good to know that there is a treatment for the low immunoglobulins if needed, and also that this may resolve with the next drug, whatever that is. He's never interested in adding anything extra to his regimen, probably because he had increasing reactions to dexamethasone (pretty extreme fluid retention among other things). His day-to-day life is so much better right now than it was for the first two years of his illness!
Thank you again; I'm going to pass this info on to my husband.
That's really interesting. I looked back and indeed, this seems to have begun a few months after his Darzalex treatment began, even though he had been treated for about a year prior with other drugs.
Darzalex seems to be working to some extent at present, and Ed has not caught any serious illnesses so far, so I suspect he will want to just leave it alone for now. It's good to know that there is a treatment for the low immunoglobulins if needed, and also that this may resolve with the next drug, whatever that is. He's never interested in adding anything extra to his regimen, probably because he had increasing reactions to dexamethasone (pretty extreme fluid retention among other things). His day-to-day life is so much better right now than it was for the first two years of his illness!
Thank you again; I'm going to pass this info on to my husband.
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Does acquired hypogammaglobulinemia go away?
Hypogammaglobulinemia refers to abnormally low levels of gamma globulins. Gamma globulins include immunoglobulins, which are antibodies your body produces to fight infection. There are five types of immunoglobulins: IgG, IgM, IgA, IgD, and IgE. IgG is the most important one.
Multiple myeloma as well as its treatments can cause hypogammaglobulinemia (as can other conditions).
In my case, hypogammaglobulinemia was diagnosed when I was diagnosed with multiple myeloma in 2015.
Despite a successful stem cell transplant in April, 2017, mine have not recovered and I have been told that they probably will never recover. Why some people do recover to normal levels of immunoglobulins after successful myeloma treatment, and others do not, is not known.
People like me, who are prone to infections as a consequence of depressed immunoglobulin levels, will need to take IVIG infusions (in my case, every other month) for the rest of their lives. Interestingly, IVIG only brings my IgG level back to normal; it does not affect the level of the other immunoglobulins; perhaps that is all that it is intended to do.
This is one of the disappointing things about successful treatment for multiple myeloma: Much of the damage the disease and/or its treatments can inflict on the body cannot be reversed, even after one is lucky enough to have achieved a stringent complete response (full remission). This is true of other cancers as well.
And, unfortunately, it is not clearly communicated to patients by many oncologists.
It is also one of the many reasons it is so important to diagnose multiple myeloma and other cancers as early as possible, before irreversible damage has been done.
Multiple myeloma as well as its treatments can cause hypogammaglobulinemia (as can other conditions).
In my case, hypogammaglobulinemia was diagnosed when I was diagnosed with multiple myeloma in 2015.
Despite a successful stem cell transplant in April, 2017, mine have not recovered and I have been told that they probably will never recover. Why some people do recover to normal levels of immunoglobulins after successful myeloma treatment, and others do not, is not known.
People like me, who are prone to infections as a consequence of depressed immunoglobulin levels, will need to take IVIG infusions (in my case, every other month) for the rest of their lives. Interestingly, IVIG only brings my IgG level back to normal; it does not affect the level of the other immunoglobulins; perhaps that is all that it is intended to do.
This is one of the disappointing things about successful treatment for multiple myeloma: Much of the damage the disease and/or its treatments can inflict on the body cannot be reversed, even after one is lucky enough to have achieved a stringent complete response (full remission). This is true of other cancers as well.
And, unfortunately, it is not clearly communicated to patients by many oncologists.
It is also one of the many reasons it is so important to diagnose multiple myeloma and other cancers as early as possible, before irreversible damage has been done.
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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: Does acquired hypogammaglobulinemia go away?
To MrPotatohead - Yes, IVIG infusion will only improve your polyclonal (normal) IgG level, since it is adding other people's IgG. The improvement is only temporary since it has no direct effect on your body's ability to produce IgG.
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Foundry738 - Name: Biclonal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2016
- Age at diagnosis: 67
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