Hi all,
I'm MGUS but fairly newly diagnosed. I sought a second opinion on Friday at a large university medical center with specialists in myeloma. Three months ago I had sought help from a hem/onc who was very good, but he did not feel a BMB was necessary. For peace of mind and with encouragement from these boards, I decided that a BMB would be best for an accurate diagnosis. Thus, pursuing the second opinion.
The second physician was excellent and spend a lot of time with me. He did tell me that because I have a kappa IgG M-spike, I am at the lowest risk for progression to smoldering or symptomatic myeloma, and he too thought it would be appropriate not to do the biopsy.
At the end of the conversation, I thought, ok, this is alright. And then he mentioned, "if you had a lot of sinus infections or something like that, it might be different."
Well, I get frequent sinus, bronchitis and various URIs which require antibiotics. So I'm on anywhere from 2-4 or more antibiotics a year. Plus, I get very frequent middle ear fungal infections.
That made him concerned, so he decided to do the BMB.
My question is this: Is this common?
From what I can read so far, MGUS can cause some suppression of the immune system to cause such infections. Has anyone had this experience?
Thank you for your time, all. I'm waiting to see the results of my next blood tests as I've noticed a consistent decline in my WBC and some others, even though they are all in the normal range. Probably a fluke.
And frankly, I"m pretty convinced they won't find anything on the BMB, but as my husband says, it's better to know than not know and wish you had found out.
Forums
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: MGUS with frequent but mild infections
Multiple myeloma produces an overabundance of antibodies that are genetically worthless to fight infection. This overproduction in essence prevents the bone marrow from producing worthwhile antibodies. The result is that you are more susceptible to infections. The larger the production of the worthless antibodies, the more susceptible you are to infections.
So I think the fact that you have frequent recurring infections is an indication of a suppressed immune system and more active multiple myeloma, or at least an unhealthy or impeded bone marrow function. That is why he wants to do a BMB.
Ron
So I think the fact that you have frequent recurring infections is an indication of a suppressed immune system and more active multiple myeloma, or at least an unhealthy or impeded bone marrow function. That is why he wants to do a BMB.
Ron
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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: MGUS with frequent but mild infections
Hi Toni,
I, too am MGUS (IgM kappa). I'm very interested in what you had to say about frequent sinus and ear infections. I'm usually very healthy, but, 3-4 times per year, I'll get awful ear and sinus problems, only on my left side.
I guess it makes sense that with MGUS we can't properly fight off infections. Well, hope you hear good news about your bone marrow biopsy results! The waiting is the hardest part!
I, too am MGUS (IgM kappa). I'm very interested in what you had to say about frequent sinus and ear infections. I'm usually very healthy, but, 3-4 times per year, I'll get awful ear and sinus problems, only on my left side.
I guess it makes sense that with MGUS we can't properly fight off infections. Well, hope you hear good news about your bone marrow biopsy results! The waiting is the hardest part!
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NC Deb - Name: NC Deb
- When were you/they diagnosed?: January 2014 MGUS
- Age at diagnosis: 56
Re: MGUS with frequent but mild infections
Thank you for your responses Ron and Deb.
Deb: Did you ever have a bone marrow biopsy to confirm MGUS?
For the past 3 or 4 years, I've had frequent sinus infections requiring repeat antibiotics to clear up. I've also had pneumonia. And my doctor has given me steroids probably once a year. I have never been hospitalized. The ear infections are fungal in nature, primarily aspergillus niger, which is rather difficult to be rid of. I do not swim or subject myself to damp / wet conditions so it's unusual that this would happen. Fortunately, I have an ENT who's been around forever and he gets me in right away when I get them.
The immunoglobulin M is slightly depressed suggesting a response to a slightly higher immunoglobulin G.
M=spike 1.1
immunoglobulin G 1600
immunoglobulin M 35
So the m-spike and immunoglobulin levels suggest that there are only 500 "good" IgG running around. IgG should be between 700-1600 (I think). That, and a very slightly low IgM, may be the reason why I'm somewhat susceptible to getting sick. Doctor said they usually don't see illness / infections unless it's around the 400 level, but maybe I'm just lucky
Deb: Did you ever have a bone marrow biopsy to confirm MGUS?
For the past 3 or 4 years, I've had frequent sinus infections requiring repeat antibiotics to clear up. I've also had pneumonia. And my doctor has given me steroids probably once a year. I have never been hospitalized. The ear infections are fungal in nature, primarily aspergillus niger, which is rather difficult to be rid of. I do not swim or subject myself to damp / wet conditions so it's unusual that this would happen. Fortunately, I have an ENT who's been around forever and he gets me in right away when I get them.
The immunoglobulin M is slightly depressed suggesting a response to a slightly higher immunoglobulin G.
M=spike 1.1
immunoglobulin G 1600
immunoglobulin M 35
So the m-spike and immunoglobulin levels suggest that there are only 500 "good" IgG running around. IgG should be between 700-1600 (I think). That, and a very slightly low IgM, may be the reason why I'm somewhat susceptible to getting sick. Doctor said they usually don't see illness / infections unless it's around the 400 level, but maybe I'm just lucky
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: MGUS with frequent but mild infections
Ron - Yes, I've also been trying to find information on other conditions with MGUS which might cause some of this.
I am confident it won't be multiple myeloma. My husband, on the other hand, just wants to know exactly what's wrong and what can be done about it.
I have a great deal of fatigue, forgetfulness, and pain, so it makes it difficult for me to function. I could never hold down a full-time job. Fortunately, I am able to not work right now.
It is very possible there's a bone marrow issue, but what it might / could be, I have no idea.
I am confident it won't be multiple myeloma. My husband, on the other hand, just wants to know exactly what's wrong and what can be done about it.
I have a great deal of fatigue, forgetfulness, and pain, so it makes it difficult for me to function. I could never hold down a full-time job. Fortunately, I am able to not work right now.
It is very possible there's a bone marrow issue, but what it might / could be, I have no idea.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: MGUS with frequent but mild infections
Toni,
I'm sorry to hear that you've been unwell for so long. I can empathize with you about the ear and sinus infections, that's for sure! Hopefully, the new doctor will be able to figure out the cause of your problems.
Have you had a free light chain serum test? That's a good one. I have a very low m-spike (about 0.2 g/dL). So, that's no big deal. But, my free light chain ratio of kappa to lambda light chains is high - it recently jumped from 20 to 27.
My specialist still does not think a bone marrow biopsy is necessary at this point in time. I go every 3 months for labwork and will broach the subject with him in 2 months. In the meantime, you will hopefully get some answers soon - best of luck!
Deb
I'm sorry to hear that you've been unwell for so long. I can empathize with you about the ear and sinus infections, that's for sure! Hopefully, the new doctor will be able to figure out the cause of your problems.
Have you had a free light chain serum test? That's a good one. I have a very low m-spike (about 0.2 g/dL). So, that's no big deal. But, my free light chain ratio of kappa to lambda light chains is high - it recently jumped from 20 to 27.
My specialist still does not think a bone marrow biopsy is necessary at this point in time. I go every 3 months for labwork and will broach the subject with him in 2 months. In the meantime, you will hopefully get some answers soon - best of luck!
Deb
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NC Deb - Name: NC Deb
- When were you/they diagnosed?: January 2014 MGUS
- Age at diagnosis: 56
Re: MGUS with frequent but mild infections
Hello,
I had MGUS for 8 years before it progressed to smoldering myeloma last year. The M-spike was found due to frequent sinus infections. I had ear tubes put in as well as my tonsils removed in an effort to stave off infections, but those tactics made matters worse. Infections were as frequent as 6 times each year before the causative factor was determined to be SMM. I did not have a bone marrow biopsy (BMB) until I saw every specialist there was for infection, and none of them could find a clinical cause for my troubles. Specialists included ENT's, urologist, pulmonologist, rheumatologist, and naturopath. My oncologist at the time still refused to complete the BMB, so I switched docs and finally had some answers.
I was IgG kappa, trace of monoclonal lambda, when I was first diagnosed with MGUS and, when they began using the serum free light chain, it was abnormal. Then in 2010 my ratio was normal and the kappa decreased and I truly thought I was in the clear.
Unfortunately, the lambda then had a significant presence and I am now IgG lambda SMM, normal FLC ratio, suppressed IgA and IgM with few normal IgG antibodies. I wish I insisted on a bone marrow biopsy because I presume that I was smoldering all along. I don't think you can assume "MGUS" by M-spike burden any longer, so I encourage you to push for a BMB.
I will begin IVIG therapy this week in an effort to just feel better. I find it so frustrating that MGUS and SMM are considered asymptomatic when people suffer for years with infections.
Thank you for your post. I posted something similar in the SMM page and didn't get much response, so I appreciate knowing that this can happen if not prevalent with MGUS. Unfortunately, it may mean that those of us that present this way will ultimately progress.
Best
J
I had MGUS for 8 years before it progressed to smoldering myeloma last year. The M-spike was found due to frequent sinus infections. I had ear tubes put in as well as my tonsils removed in an effort to stave off infections, but those tactics made matters worse. Infections were as frequent as 6 times each year before the causative factor was determined to be SMM. I did not have a bone marrow biopsy (BMB) until I saw every specialist there was for infection, and none of them could find a clinical cause for my troubles. Specialists included ENT's, urologist, pulmonologist, rheumatologist, and naturopath. My oncologist at the time still refused to complete the BMB, so I switched docs and finally had some answers.
I was IgG kappa, trace of monoclonal lambda, when I was first diagnosed with MGUS and, when they began using the serum free light chain, it was abnormal. Then in 2010 my ratio was normal and the kappa decreased and I truly thought I was in the clear.
Unfortunately, the lambda then had a significant presence and I am now IgG lambda SMM, normal FLC ratio, suppressed IgA and IgM with few normal IgG antibodies. I wish I insisted on a bone marrow biopsy because I presume that I was smoldering all along. I don't think you can assume "MGUS" by M-spike burden any longer, so I encourage you to push for a BMB.
I will begin IVIG therapy this week in an effort to just feel better. I find it so frustrating that MGUS and SMM are considered asymptomatic when people suffer for years with infections.
Thank you for your post. I posted something similar in the SMM page and didn't get much response, so I appreciate knowing that this can happen if not prevalent with MGUS. Unfortunately, it may mean that those of us that present this way will ultimately progress.
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: MGUS with frequent but mild infections
Jhorner -
I am so sorry to hear of your plight. How incredibly frustrating and futile. And I am so glad you had the perseverance to finally change to a different oncologist.
Honestly, I like my first oncologist, I just disagree with him about a biopsy. But that's the wonderful thing about these forums: everyone here, including some of the physicians who read some of these posts, recommend seeing a myeloma specialist and getting a BMB. That's the kind of encouragement we need because we have to do what's best for our health. As silly as it sounds, I didn't want to "offend" my doctor. I know, silly.
Had you asked your first oncologist to do a bone marrow biopsy? I have read in some of the myeloma literature that 50% of oncologists support doing a bone marrow biopsy to diagnose MGUS or SMM (or multiple myeloma) when an m-protein is detected. Some only do it if the m-protein is above 1.5.
Thank you so much for taking the time to share with the MGUS group your experience. You can help so many people by your sharing. I don't think it's generally known that above average frequent infections can be an indication that more testing should be done. I have since found some literature that says something to the effect: especially re: frequent sinus and ear infections and / or urinary tract infections and / or pulmonary infections. Wish I knew where that study was now.
Anyway, I hope and pray that your IVIG treatment will help alleviate your condition. Please do let us know here on the MGUS forum too. I know I'd like to see how you do with your treatment.
I can't believe you had to have tonsillectomy and ear tubes! Ugh!
.
I am so sorry to hear of your plight. How incredibly frustrating and futile. And I am so glad you had the perseverance to finally change to a different oncologist.
Honestly, I like my first oncologist, I just disagree with him about a biopsy. But that's the wonderful thing about these forums: everyone here, including some of the physicians who read some of these posts, recommend seeing a myeloma specialist and getting a BMB. That's the kind of encouragement we need because we have to do what's best for our health. As silly as it sounds, I didn't want to "offend" my doctor. I know, silly.
Had you asked your first oncologist to do a bone marrow biopsy? I have read in some of the myeloma literature that 50% of oncologists support doing a bone marrow biopsy to diagnose MGUS or SMM (or multiple myeloma) when an m-protein is detected. Some only do it if the m-protein is above 1.5.
Thank you so much for taking the time to share with the MGUS group your experience. You can help so many people by your sharing. I don't think it's generally known that above average frequent infections can be an indication that more testing should be done. I have since found some literature that says something to the effect: especially re: frequent sinus and ear infections and / or urinary tract infections and / or pulmonary infections. Wish I knew where that study was now.
Anyway, I hope and pray that your IVIG treatment will help alleviate your condition. Please do let us know here on the MGUS forum too. I know I'd like to see how you do with your treatment.
I can't believe you had to have tonsillectomy and ear tubes! Ugh!
.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: MGUS with frequent but mild infections
You will find this article referenced in other threads on the subject of infections and MGUS. Some interesting items to consider here:
"Myeloma Precursor Disease MGUS May Increase Risk Of Developing Infections," The Myeloma Beacon, February 22, 2012.
To my thinking, this all begs for the need to pay a lot of attention to diet and exercise to make the most of the remaining, correctly functioning portion of one's immune system.
"Myeloma Precursor Disease MGUS May Increase Risk Of Developing Infections," The Myeloma Beacon, February 22, 2012.
To my thinking, this all begs for the need to pay a lot of attention to diet and exercise to make the most of the remaining, correctly functioning portion of one's immune system.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS with frequent but mild infections
Multibilly - I do agree with you regarding diet and exercise. I'd also add healthy sleep and overall balance - emotional and spiritual. Since we closed our business this past February, I have been able to follow a very healthy diet, get involved in church and cultivate stronger friendships. I am not able to exercise a great deal, but I do PT recommended stretches, walks and bicycle although only for short times.
It's much better than when we had our business and we were working 7 days a week subsisting on Little Caesars. Ugh!
It's much better than when we had our business and we were working 7 days a week subsisting on Little Caesars. Ugh!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
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