I just read this passage in the paper listed below about immune deficiency in multiple myeloma:
"There is clear evidence of immune dysfunction in multiple myeloma that leads to vulnerability to infection, a leading cause of morbidity and mortality. Lymphocytopenia (23), hypogammaglobulinemia (24), and granulocytopenia secondary to bone marrow infiltration and therapy (25) are factors that are consistently found to increase the susceptibility of multiple myeloma patients to infections. In a study of 3107 newly diagnosed multiple myeloma patients in the UK Medical Research Council Trial from 1980 to 2002, infections caused 135 deaths (45%) of all deaths, occurring within 60 days of diagnosis and with two-thirds of these being attributed to pneumonia (26). The risk of infection is highest in the first 3 months and decreases with response to treatment, revealing a direct causative links as tumor burden is reduced. The most frequent infections are bacteremia and pneumonia caused by Haemophilus influenzae, Streptococcus pneumoniae, and Escherichia coli (27–29). These microorganisms predominate in the early stages of disease and in plateau phase, but in the terminal phase of the disease the spectrum of causative microorganisms widens (29, 30). Recurrent bacterial infections at presentation meet the diagnostic criteria for symptomatic multiple myeloma (11)."
Source:
SM Tete et al, "Immune Defects in the Risk of Infection and Response to Vaccination in Monoclonal Gammopathy of Undetermined Significance and Multiple Myeloma," Frontiers in Immunology, June 2014 (full text of article)
Reading the entire article, it is clearer as to why "infection is symptomatic multiple myeloma", but not treated alongside CRAB symptoms, but I have to wonder in this quagmire of " risk of infection from disease" and "risk of infection from treatment" - what is the treatment protocol? Do patients who present with immunoparesis (hypogammaglobulinemia) undergo autologous stem cell transplant or continue with Velcade, Revlimid, and dexamethasone (VRd)?
I am a smoldering patient who has not had any treatment thus far, but I have had some serious infections lately (even while on IVIG), including pneumonia and red-lining at an IV site, and I'm struggling to understand the overall implications of presenting with infection and immune deficiency and how that comes into play when determining when and how to treat? I feel as though I'm at risk either way, so I was wondering if there is a standard of care that weighs these risks?
Best,
J
Forums
10 posts
• Page 1 of 1
-
jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Immune system dysfunction quagmire
Thanks for sharing this article. Sorry to hear you are having all this trouble with infections. This review article summarizes and describes the current state of knowledge about immune dysfunction in the MGUS-multiple myeloma spectrum (but doesn't really address smoldering multiple myeloma specifically). I will look the article over in a little more detail later and see if I have anything to add (running late for work).
From what I've read so far, only immunoparesis (low uninvolved immunoglobulins) is listed as a factor in categorizing risk level for smoldering myeloma, and not frequency or type of infections. My guess is (and it's just a guess), that unless immune dysfunction on its own becomes a myeloma defining symptom or a factor that moves you into the ultra-high risk smoldering category, you could just be going from the frying pan into the fire if you started active treatment. What does your doctor say?
As an aside, I was recently diagnosed with smoldering myeloma and had inquired whether I should have the pneumococcal immunizations that are available (Prevnar-13 and Pneumovax). I do not have immunoparesis. The answer I got was that technically I don't meet criteria (I am 56 and do not have overt myeloma), but that since there is data that myeloma patients often have a poor response to the vaccine, it would be reasonable to do it now. So I had the Prevnar-13 on Friday and I had a pretty significant local reaction (swelling and pain), and felt kind of crummy all weekend. I guess it's a good sign that my immune system knew it had a job to do.
From what I've read so far, only immunoparesis (low uninvolved immunoglobulins) is listed as a factor in categorizing risk level for smoldering myeloma, and not frequency or type of infections. My guess is (and it's just a guess), that unless immune dysfunction on its own becomes a myeloma defining symptom or a factor that moves you into the ultra-high risk smoldering category, you could just be going from the frying pan into the fire if you started active treatment. What does your doctor say?
As an aside, I was recently diagnosed with smoldering myeloma and had inquired whether I should have the pneumococcal immunizations that are available (Prevnar-13 and Pneumovax). I do not have immunoparesis. The answer I got was that technically I don't meet criteria (I am 56 and do not have overt myeloma), but that since there is data that myeloma patients often have a poor response to the vaccine, it would be reasonable to do it now. So I had the Prevnar-13 on Friday and I had a pretty significant local reaction (swelling and pain), and felt kind of crummy all weekend. I guess it's a good sign that my immune system knew it had a job to do.
-
CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: Immune system dysfunction quagmire
I also got a pneumonia vaccine last year (can't remember which one) and will get the other one this year. I'm also smoldering and my GP felt that is was important that I get both despite my young age.
Is it the case that you can move in and out of immunoparesis over time? It showed up on one of my immunoglobulin results when a couple of numbers moved lower. However, these same numbers moved back up in my next set of labs and the immunoparesis was not mentioned.
Is it the case that you can move in and out of immunoparesis over time? It showed up on one of my immunoglobulin results when a couple of numbers moved lower. However, these same numbers moved back up in my next set of labs and the immunoparesis was not mentioned.
-
FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: Immune system dysfunction quagmire
Thank you for your replies.
In answering your question about immunoparesis waxing and waning - I believe it can when it is caused by a real reaction of your immune system to histamines or invaders, but in my case the immunoparesis is a result of the smoldering myeloma and has been consistent and worsening over time. As an MGUS patient 2005-2012, I had low IgM, and as a smoldering patient I have both low IgM and IgA. Since diagnosis in 2013, the numbers have essentially decreased by 50%.
IVIG helps a lot with the daily challenges of a weakened immune system, such as histamine reactions to food, post exertional malaise, breathlessness, swollen glands, headaches but it doesn't always prevent infection.
J
In answering your question about immunoparesis waxing and waning - I believe it can when it is caused by a real reaction of your immune system to histamines or invaders, but in my case the immunoparesis is a result of the smoldering myeloma and has been consistent and worsening over time. As an MGUS patient 2005-2012, I had low IgM, and as a smoldering patient I have both low IgM and IgA. Since diagnosis in 2013, the numbers have essentially decreased by 50%.
IVIG helps a lot with the daily challenges of a weakened immune system, such as histamine reactions to food, post exertional malaise, breathlessness, swollen glands, headaches but it doesn't always prevent infection.
J
-
jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Immune system dysfunction quagmire
FingersCrossed, most of the labs that are followed will go up and down over time, so if the numbers are borderline for immunoparesis, they may cross back and forth across the line. If it's clinically relevant immunoparesis, the numbers should be persistently below the normal range. I'm not sure how many tests in a row would be enough, though.
-
CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: Immune system dysfunction quagmire
Hi,
My immunoglobulins are all low and my involved immunoglobulin has always been below the reference range on all of my tests. I have smoldering multiple myeloma with a diagnosis of hypogammaglobulinemia and have had an annoying sinus infection for almost 4 years - had three surgeries to clean out sinuses, been on many rounds of antibiotics, steroids, inhalers, nebulizers with medications, compounded antibiotics, etc. I have asked about IVIG, but I guess I'm not sick enough. So far, I have lucked out with the antibiotics in that they have not caused any other serious side effects.
Kay
My immunoglobulins are all low and my involved immunoglobulin has always been below the reference range on all of my tests. I have smoldering multiple myeloma with a diagnosis of hypogammaglobulinemia and have had an annoying sinus infection for almost 4 years - had three surgeries to clean out sinuses, been on many rounds of antibiotics, steroids, inhalers, nebulizers with medications, compounded antibiotics, etc. I have asked about IVIG, but I guess I'm not sick enough. So far, I have lucked out with the antibiotics in that they have not caused any other serious side effects.
Kay
-
Kay - Name: Kay Wilson
- Who do you know with myeloma?: SMM
- When were you/they diagnosed?: 2014
- Age at diagnosis: 72
Re: Immune system dysfunction quagmire
Thanks again everyone for your replies. I was hoping to find out if anyone presented this way and if there was a standard of care when patients present with infection. My involved immunoglobulin, IgG that is intact, is only 350. My others are both very low as well and the monthly IVIG has not prevented infection. I was wondering if the standard of care is to increase infusion cycle or volume of IVIG, or treatment for myeloma? Is infection ever reason enough to treat smoldering multiple myeloma?
Kay,
You obviously presented with infection, and I wanted to tell you that my infections started in my sinuses and I had three procedures, ear tubes, scrape, tonsils removed and though these things helped somewhat I still succumbed to infection. It wasn't until I started to get kidney infections that I was put on IVIG.
Best
J
Kay,
You obviously presented with infection, and I wanted to tell you that my infections started in my sinuses and I had three procedures, ear tubes, scrape, tonsils removed and though these things helped somewhat I still succumbed to infection. It wasn't until I started to get kidney infections that I was put on IVIG.
Best
J
-
jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Immune system dysfunction quagmire
J,
You might find this forum thread to be somewhat helpful:
"Frequent infections & smoldering myeloma" (started Apr 15, 2015)
You might find this forum thread to be somewhat helpful:
"Frequent infections & smoldering myeloma" (started Apr 15, 2015)
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Immune system dysfunction quagmire
Thanks Multibilly,
I had already seen this post and replied to it with some advice to others about the benefits of IVIG in treating chronic and acute infections while we "watch and wait".
I was really hoping to find out if there was a standard of care when a patient presents with infection, such as first line of treatment is IVIG, second line is prophylactic antibiotics, etc., and also some indication of what the course of action is when an IVIG-dependent patient continues to get life threatening infections? At what point, if ever, is smoldering myeloma considered active myeloma with a patient that presents with infection?
J.
I had already seen this post and replied to it with some advice to others about the benefits of IVIG in treating chronic and acute infections while we "watch and wait".
I was really hoping to find out if there was a standard of care when a patient presents with infection, such as first line of treatment is IVIG, second line is prophylactic antibiotics, etc., and also some indication of what the course of action is when an IVIG-dependent patient continues to get life threatening infections? At what point, if ever, is smoldering myeloma considered active myeloma with a patient that presents with infection?
J.
-
jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Immune system dysfunction quagmire
Hi JHorner,
You've mentioned in previous postings that you at least sometimes go to Dana-Farber to be seen by myeloma specialists there. I assume you've discussed the questions you've described in this thread with the specialists there. What answers have you gotten from them?
My impression is that it is still rare these days for a myeloma specialist to conclude that someone has multiple myeloma that should be actively treated based solely on that person being more prone to infections -- even serious ones. I think most specialists want more evidence of disease activity (CRAB criteria, other myeloma-defining events) before they will treat the disease with anti-myeloma therapies.
You've mentioned in previous postings that you at least sometimes go to Dana-Farber to be seen by myeloma specialists there. I assume you've discussed the questions you've described in this thread with the specialists there. What answers have you gotten from them?
My impression is that it is still rare these days for a myeloma specialist to conclude that someone has multiple myeloma that should be actively treated based solely on that person being more prone to infections -- even serious ones. I think most specialists want more evidence of disease activity (CRAB criteria, other myeloma-defining events) before they will treat the disease with anti-myeloma therapies.
-
JimNY
10 posts
• Page 1 of 1