Can someone explain the idea of a compromised immunity as it applies to those of us with multiple myeloma?
I'll try to outline my confusion.
Obviously I know that a compromised immune system, or increased risk to infection, is part of this disease. What I don't understand (and it is probably my lack of understanding of the immune system) is what this entails and how it might change with treatment, etc.
As I've gone through my initial infusion treatments, I've responded well and the M-spike has decreased substantially. My white blood cell count was never terrible, and over time the WBC count and neutrophil level have come into a safe and normal range.
That said, in the last couple of months I have fought two "colds." The first moved into my chest, turned into a wicked cough, then a fever, and my doctor gave me antibiotics to combat it. I'm just now getting over a cold that, while not severe, has lingered a bit longer than I think it would have prior to all this.
I know my wife and I have looked at my CBC results and thought my "immunity" was normal, but I'm guessing this isn't correct and I need to be more careful in the future.
So, an explanation of what I'm missing here would be helpful.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Compromised immunity - what exactly is it?
First and foremost, I am not doctor, so what I am saying is as a patient has to be viewed from that perspective. My knowledge is based primarily on my experience and gleaned from what others have posted on this board.
I would focus on 3 tests
The total immunology labs are an indication of how well the bone marrow is working and producing immunoglobulins. There are proteins in the body that have antibody activity. These are not to be confused with serum electrophoresis (SPEP) or immunofixation (IFE of IFX) tests that may determine an excess of certain a certain type of protein. Consistently low numbers in your immunoglobulin test is an indication of a suppressed immune system. Sometimes the immune system is suppressed by the multiple myeloma and sometimes it can be suppressed by the chemotherapy.
In my case, it was probably a combination of both, and I developed C. diff and viral meningitis back in July 2012. Before the infection, my Neu # over the prior 6 months had fallen and were bouncing around to just above to just below normal, 1.3-3.3 (normal 2.2-4.8) My overall white count was consistently below normal in the 3-4 range (normal 4.8-10.8). The big issue was my immunoglobulin. They were all below normal.
After the infections, my oncologist put me on IVIG and took me off Revlimid. Not sure that the Revlimid was a contributor or not, but certainly the IVIG boosted my immune system. My neutrophil count returned to being consistently above normal and 2 of 3 of my immunoglobulins returned to within the normal range. I also have avoided any infections (used to get 2 to 3 sinus infections requiring antibiotics annually). I continue to receive IVIG infusions once a month.
Hope this helps.
I would focus on 3 tests
- WBC - As a general marker
- Neu # / ANC - As a measure of or total neutrophil count (type of white blood cell that fights infection)
- Your immunology labs that measure your total IgA, IgG and IgM proteins
The total immunology labs are an indication of how well the bone marrow is working and producing immunoglobulins. There are proteins in the body that have antibody activity. These are not to be confused with serum electrophoresis (SPEP) or immunofixation (IFE of IFX) tests that may determine an excess of certain a certain type of protein. Consistently low numbers in your immunoglobulin test is an indication of a suppressed immune system. Sometimes the immune system is suppressed by the multiple myeloma and sometimes it can be suppressed by the chemotherapy.
In my case, it was probably a combination of both, and I developed C. diff and viral meningitis back in July 2012. Before the infection, my Neu # over the prior 6 months had fallen and were bouncing around to just above to just below normal, 1.3-3.3 (normal 2.2-4.8) My overall white count was consistently below normal in the 3-4 range (normal 4.8-10.8). The big issue was my immunoglobulin. They were all below normal.
After the infections, my oncologist put me on IVIG and took me off Revlimid. Not sure that the Revlimid was a contributor or not, but certainly the IVIG boosted my immune system. My neutrophil count returned to being consistently above normal and 2 of 3 of my immunoglobulins returned to within the normal range. I also have avoided any infections (used to get 2 to 3 sinus infections requiring antibiotics annually). I continue to receive IVIG infusions once a month.
Hope this helps.
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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: Compromised immunity - what exactly is it?
Thank you Ron.
Here are my last complete test results (I've had two CBC tests since with similar results, no recent SPEP tests). I'm not including the electrolytes or liver studies.
WBC 5.63
RBC 3.98
Hb 13.4
HCT 40
MCV 101
MCH 33.7
MCHC 33.3
PLT 123
RDW-CV 14.9
Neutrophils 3.82 (no absolute Neu comment)
Immature Granulocytes 0.06
Kappa free light 1.89
Lambda Free 1.42
FLC RATIO 1.33
Protein Elp Total 6.5
Prot Albumin 4.2
Prot Alpha-1 0.02
Alpha-2 0.06
Beta 0.08
Gamma 0.08
Electrophoresis Interp. Monoclonal component present, see identification and Quant.
Monoclonal 1 ID, SR. IgG kappa monoclonal component (d) A
Monoclonal 1 Quant, SRM 0.06
Immunofixation. IgG kappa monoclonal component. (D) A
Here are my last complete test results (I've had two CBC tests since with similar results, no recent SPEP tests). I'm not including the electrolytes or liver studies.
WBC 5.63
RBC 3.98
Hb 13.4
HCT 40
MCV 101
MCH 33.7
MCHC 33.3
PLT 123
RDW-CV 14.9
Neutrophils 3.82 (no absolute Neu comment)
Immature Granulocytes 0.06
Kappa free light 1.89
Lambda Free 1.42
FLC RATIO 1.33
Protein Elp Total 6.5
Prot Albumin 4.2
Prot Alpha-1 0.02
Alpha-2 0.06
Beta 0.08
Gamma 0.08
Electrophoresis Interp. Monoclonal component present, see identification and Quant.
Monoclonal 1 ID, SR. IgG kappa monoclonal component (d) A
Monoclonal 1 Quant, SRM 0.06
Immunofixation. IgG kappa monoclonal component. (D) A
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Compromised immunity - what exactly is it?
Mark,
Generally speaking, the neutrophil count is used to assess your susceptibility to bacterial infections, while your immunoglobulin count (antibodies) is used to assess your susceptibility to viral infections.
The term "neutropenic" indicates that a person has a very low neutrophil count, and they are so susceptible to bacterial infections that normal daily activities could put them at risk of infection in a life threatening way. On the scale used by Ron (and most), neutropenia is defined as an Absolute Neutrophil Count (ANC) of 1.5 or less. Mild neutropenia is 1.0 - 1.5, moderate 0.5 - 1.0, and severe less than 0.5. In the article cited, the scale is multiplied by 1000. The units are cells per volume, either liters or uL.
You can usually calculate the ANC from figures provided on the CBC, however, I note that you are missing a couple of necessary values,
"The ANC is calculated by multiplying the total white blood cell (WBC) count by the percentage of neutrophils (segmented neutrophils or granulocytes) plus the band forms of neutrophils in the complete blood count (CBC) differential." (source)
It can be confusing because neutrophils have a couple of different names: neutrophils, or segmented neutrophils (segs), or granulocytes. Good thing nowadays most CBC machines calculate and report the ANC for you.
All that being said, though, these numbers are a very rough way of measuring the immune system. The immune system is profoundly complicated, dynamic, and finely tuned. There are plenty of examples in which the numbers are normal or close to normal, yet the actual protection provided is much less, and vice versa. So we tend to focus on these numbers because they are the tool we've got, but don't be fooled into thinking they give a comprehensive view of immune system function.
And that doesn't even begin to address antibody function and protection from viruses.
The point of all this is that even though your numbers might be normal, there's no doubt that both the myeloma and the chemotherapy affect your immune system in non-measurable ways that can put you at increased risk of all kinds of infections, prolonged infections, and complications from those infections.
Generally speaking, the neutrophil count is used to assess your susceptibility to bacterial infections, while your immunoglobulin count (antibodies) is used to assess your susceptibility to viral infections.
The term "neutropenic" indicates that a person has a very low neutrophil count, and they are so susceptible to bacterial infections that normal daily activities could put them at risk of infection in a life threatening way. On the scale used by Ron (and most), neutropenia is defined as an Absolute Neutrophil Count (ANC) of 1.5 or less. Mild neutropenia is 1.0 - 1.5, moderate 0.5 - 1.0, and severe less than 0.5. In the article cited, the scale is multiplied by 1000. The units are cells per volume, either liters or uL.
You can usually calculate the ANC from figures provided on the CBC, however, I note that you are missing a couple of necessary values,
"The ANC is calculated by multiplying the total white blood cell (WBC) count by the percentage of neutrophils (segmented neutrophils or granulocytes) plus the band forms of neutrophils in the complete blood count (CBC) differential." (source)
It can be confusing because neutrophils have a couple of different names: neutrophils, or segmented neutrophils (segs), or granulocytes. Good thing nowadays most CBC machines calculate and report the ANC for you.
All that being said, though, these numbers are a very rough way of measuring the immune system. The immune system is profoundly complicated, dynamic, and finely tuned. There are plenty of examples in which the numbers are normal or close to normal, yet the actual protection provided is much less, and vice versa. So we tend to focus on these numbers because they are the tool we've got, but don't be fooled into thinking they give a comprehensive view of immune system function.
And that doesn't even begin to address antibody function and protection from viruses.
The point of all this is that even though your numbers might be normal, there's no doubt that both the myeloma and the chemotherapy affect your immune system in non-measurable ways that can put you at increased risk of all kinds of infections, prolonged infections, and complications from those infections.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Compromised immunity - what exactly is it?
Tracy,
Thank you, doctor, for chiming in to this discussion. I think a lot of posters on this board are confused about the Immunology labs. I became aware of the importance of those after my viral meningitis. That was the main reason, as opposed to the C. diff, that I was put on IVIG.
I am guessing, but I think the neu # of 3.8 that Mark cited is probably the ANC #. If that is the case, he is well within the normal range.
Mark, you did not post the immunology numbers. Those are not run with a CBC and have to be ordered separately. However, most oncologists will run those at the same time as they do the serum free light chain (sFLC) tests and the serum electrophoresis and immunofixation tests.
A cold is a form of a virus, but not a severe viral infection like meningitis. I had developed expressive aphasia (could hear and understand, but could not verbalize). In the ER they thought I had a stroke and had me transferred to a stroke specialty hospital. Then I had an MRI and they discovered I had brain swelling caused by the meningitis. Next thing I know I am surrounded by nurses in full protective gear and put in isolation. I was hospitalized for 4 days. No fun!
Thank you, doctor, for chiming in to this discussion. I think a lot of posters on this board are confused about the Immunology labs. I became aware of the importance of those after my viral meningitis. That was the main reason, as opposed to the C. diff, that I was put on IVIG.
I am guessing, but I think the neu # of 3.8 that Mark cited is probably the ANC #. If that is the case, he is well within the normal range.
Mark, you did not post the immunology numbers. Those are not run with a CBC and have to be ordered separately. However, most oncologists will run those at the same time as they do the serum free light chain (sFLC) tests and the serum electrophoresis and immunofixation tests.
A cold is a form of a virus, but not a severe viral infection like meningitis. I had developed expressive aphasia (could hear and understand, but could not verbalize). In the ER they thought I had a stroke and had me transferred to a stroke specialty hospital. Then I had an MRI and they discovered I had brain swelling caused by the meningitis. Next thing I know I am surrounded by nurses in full protective gear and put in isolation. I was hospitalized for 4 days. No fun!
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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: Compromised immunity - what exactly is it?
I find it interesting what Tracy said about the immune system:
My immunoglobulins are all below normal:
IgG = 340
IgA = 14
IgM = 40
However, in spite of these numbers and 2 years on Revlimid, Velcade, and dexamethasone (RVD), I'm never sick.
There are plenty of examples in which the numbers are normal or close to normal, yet the actual protection provided is much less, and vice versa. So we tend to focus on these numbers because they are the tool we've got, but don't be fooled into thinking they give a comprehensive view of immune system function.
My immunoglobulins are all below normal:
IgG = 340
IgA = 14
IgM = 40
However, in spite of these numbers and 2 years on Revlimid, Velcade, and dexamethasone (RVD), I'm never sick.
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Janet1520
Re: Compromised immunity - what exactly is it?
Janet,
That is very interesting. Your numbers are lower than what mine were before my meningitis. All tests are built off of a standard or average. But everyone is different and not all of us fall within or react within a predicted standard.
That is very interesting. Your numbers are lower than what mine were before my meningitis. All tests are built off of a standard or average. But everyone is different and not all of us fall within or react within a predicted standard.
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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: Compromised immunity - what exactly is it?
Hi!
Thank you all for shedding light on the immune system and how we can somewhat look for measurement. I went through an auto stem cell transplant and am now on Day 87.
I still wear my N95 mask when I go outside, and have begun to leave it off when I am around my grandkids if they aren't showing any symptoms of being sick. It's hard to find any information about how long I need to take these precautions. My ANC is now 2.4 (if I calculated correctly). I am concerned about the fungal aspect of things. I'm involved with horses and the barn is horrible (they use a blower to clean out the aisle and I KNOW that I can't be around there). But, I'm wondering just how careful other people have been with respect to mask use?
Thank you all for shedding light on the immune system and how we can somewhat look for measurement. I went through an auto stem cell transplant and am now on Day 87.
I still wear my N95 mask when I go outside, and have begun to leave it off when I am around my grandkids if they aren't showing any symptoms of being sick. It's hard to find any information about how long I need to take these precautions. My ANC is now 2.4 (if I calculated correctly). I am concerned about the fungal aspect of things. I'm involved with horses and the barn is horrible (they use a blower to clean out the aisle and I KNOW that I can't be around there). But, I'm wondering just how careful other people have been with respect to mask use?
Re: Compromised immunity - what exactly is it?
Hi all.
We're relatively new to myeloma. My husband is now on day #11 after his autologous stem cell transplant (ASCT). While i learned immunology and infectious disease in medical school (quite a while ago), I learned more about infection prevention and myeloma precautions from this site and a newer friend who is a 14 year myeloma veteran.
Tracy's summary in spot on. In retrospect, my husband's paraprotein was likely making his colds more intense for at least the last year before his November - December, 2015 diagnosis. He had mild neutropenia once before diagnosis, but our PCP thought it was a lab anomaly given his normal RBCs and platelets and other WBCs (and it was normal on recheck). His M-spike was mildly elevated and he had some excess free light chain, but mostly a lot of boney disease.
Since chemo and into the ASCT, he has been profoundly hypogammaglobulinemic but was neutrophil normal until the transplant. So he was most at risk for viral and atypical bacterial illnesses (PCP, listeria), though antibodies also target and trigger a lot of the response to bacteria or fungus (anything foreign once it gets through the skin, lungs, or stomach lining).
We put in an air filtration / recirculation system on our furnace to remove airborne bacteria, viruses, and fungus (our home is now a clean room). We have the mail and packages delivered to the garage and I open and sort. We have hospital hand sanitizers at all our doors and I wash all produce in water / vinegar. We rarely eat out (more to avoid sick people in restaurants than contaminated food), but we even order delivery a lot less, and said bye to sushi. We exercise regularly but no longer in gyms or public pools. I now do all the shopping. I guess you could say he has said goodbye to crowds, unwashed surfaces, and poor air circulation.
The hardest for us has been limiting our spontaneous contacts with friends - especially those with children in daycare and in the dirty hands ages of childhood. We find the pre-visit questions we want to ask off-putting (has anyone been sick? runny noses? is anything working its way through the school or office?). We always have masks and hand sanitizer in our pockets just in case.
We got the flu just before transplant on the one day we went to a truly public place. We dropped off our ballots at city hall instead of mailing them in. He was a new voter and I wanted him to experience voting. My bad.
We know we have a lot to learn but our take is let's only take risks on things he enjoys and minimize what we can even then.
We're relatively new to myeloma. My husband is now on day #11 after his autologous stem cell transplant (ASCT). While i learned immunology and infectious disease in medical school (quite a while ago), I learned more about infection prevention and myeloma precautions from this site and a newer friend who is a 14 year myeloma veteran.
Tracy's summary in spot on. In retrospect, my husband's paraprotein was likely making his colds more intense for at least the last year before his November - December, 2015 diagnosis. He had mild neutropenia once before diagnosis, but our PCP thought it was a lab anomaly given his normal RBCs and platelets and other WBCs (and it was normal on recheck). His M-spike was mildly elevated and he had some excess free light chain, but mostly a lot of boney disease.
Since chemo and into the ASCT, he has been profoundly hypogammaglobulinemic but was neutrophil normal until the transplant. So he was most at risk for viral and atypical bacterial illnesses (PCP, listeria), though antibodies also target and trigger a lot of the response to bacteria or fungus (anything foreign once it gets through the skin, lungs, or stomach lining).
We put in an air filtration / recirculation system on our furnace to remove airborne bacteria, viruses, and fungus (our home is now a clean room). We have the mail and packages delivered to the garage and I open and sort. We have hospital hand sanitizers at all our doors and I wash all produce in water / vinegar. We rarely eat out (more to avoid sick people in restaurants than contaminated food), but we even order delivery a lot less, and said bye to sushi. We exercise regularly but no longer in gyms or public pools. I now do all the shopping. I guess you could say he has said goodbye to crowds, unwashed surfaces, and poor air circulation.
The hardest for us has been limiting our spontaneous contacts with friends - especially those with children in daycare and in the dirty hands ages of childhood. We find the pre-visit questions we want to ask off-putting (has anyone been sick? runny noses? is anything working its way through the school or office?). We always have masks and hand sanitizer in our pockets just in case.
We got the flu just before transplant on the one day we went to a truly public place. We dropped off our ballots at city hall instead of mailing them in. He was a new voter and I wanted him to experience voting. My bad.
We know we have a lot to learn but our take is let's only take risks on things he enjoys and minimize what we can even then.
-
rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
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