Well, my history is very close to yours Eric.
Velcade / prednisone, stem cell transplant, but no maintenance for the past 3/1/2 years. My present situation, coming out of remission, is 14% clonal, I have persistent low platelet numbers, but my other blood levels have been within the low levels with an occasional drop in WBC or RBC.
My immunoglobulins are as follows, IgG=288, IgA=25, IgM=28.
I'm scheduled to start Revlimid, but, as I stated, I'm not currently on any multiple myeloma treatment.
Forums
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Low IgM antibody levels - any cause for concern?
Thanks Wayne K.
So you are roughly 3.5 years post stem cell transplant and still have CBC counts that are on the low side without being on any kind of maintenance therapy. Interesting. So maybe Revlimid is not always to blame for low counts.
It looks like your IgA, IgG, and IgM are all on the low side. What had me puzzled was my IgA and IgG levels are really good, right where they should be in the middle of the normal range, but IgM is really low, almost half of what you have. Kind of strange.
So you are roughly 3.5 years post stem cell transplant and still have CBC counts that are on the low side without being on any kind of maintenance therapy. Interesting. So maybe Revlimid is not always to blame for low counts.
It looks like your IgA, IgG, and IgM are all on the low side. What had me puzzled was my IgA and IgG levels are really good, right where they should be in the middle of the normal range, but IgM is really low, almost half of what you have. Kind of strange.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Low IgM antibody levels - any cause for concern?
Hi Eric - Like you, my IgM is suppressed (mine stated less than 20 mg/dL) with a normal IgA and abnormal IgG (1630). Since diagnosed with MGUS (IgG kappa), my levels have remained the same.
When officially told about the M spike 2.5 years ago, I asked the endocrinologist if there were other blood issues and she informed me that for 8 years I had a low/abnormal WBC (lower than 4 sometimes), but wasn't concerned because I didn't get sick. Assumed since MGUS is an immune disease, I would start to acquire more bacterial/virus infections (provide tracheostomy care - coughed on a lot), but so far no problems.
My doctors don't appear concerned about this and their only advice is to eat healthy and exercise. Diane
When officially told about the M spike 2.5 years ago, I asked the endocrinologist if there were other blood issues and she informed me that for 8 years I had a low/abnormal WBC (lower than 4 sometimes), but wasn't concerned because I didn't get sick. Assumed since MGUS is an immune disease, I would start to acquire more bacterial/virus infections (provide tracheostomy care - coughed on a lot), but so far no problems.
My doctors don't appear concerned about this and their only advice is to eat healthy and exercise. Diane
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Dianem
Re: Low IgM antibody levels - any cause for concern?
I'm IgG kappa smoldering myeloma - though my IgG is within range near 1,100 with an M-spike that ranges near 0.700 - 0.800 g/dL , normal IgA of aprox. 270. My IgM level was on the low end this spring when I began to be followed by a major cancer center. By August, my IgM reached 28, and this month, December 2014, it is now at 26.
The PA today said she's never seen a low IgM and normally levels are too high (depending on the involved type) - I asked the doctor and she didn't have too much to say on the IgM but will test me for amyloid - not sure if that's tied at all to the continued drop in IgM or just my overall condition and I didn't really ask as we covered so much today.
Anyway, just wanted to throw out a case of below normal IgM for someone with SMM IgG kappa (10% aberrant clonal PC, under 1.0 g/dL M spike).
I have to return for an earlier than usual (30 days instead of 90) workup and will ask a bit more about the IgM level if it continues to be lowered.
Besides the usual blood and urine labs, I will undergo a fat pad biopsy, BMP and / or ECHO (due to lower leg edema), and MRI of the back with contrast (due to hip numbness / tingling at times).
My only "symptom" other than fatigue is continued mild anemia for which a cause cannot be determined (they don't expect with only 10% marrow involvement that would result in a drop in RBC production but benign hematology, endo - nobody else can some up with a cause ... ).
Hopefully I'll remain smoldering for some time (oh and a little high on protein in urine at 200 g though BJ only shows on immunofixation, not UPEP thankfully) .
I'll post if anything becomes of the selective IgM drop.
The PA today said she's never seen a low IgM and normally levels are too high (depending on the involved type) - I asked the doctor and she didn't have too much to say on the IgM but will test me for amyloid - not sure if that's tied at all to the continued drop in IgM or just my overall condition and I didn't really ask as we covered so much today.
Anyway, just wanted to throw out a case of below normal IgM for someone with SMM IgG kappa (10% aberrant clonal PC, under 1.0 g/dL M spike).
I have to return for an earlier than usual (30 days instead of 90) workup and will ask a bit more about the IgM level if it continues to be lowered.
Besides the usual blood and urine labs, I will undergo a fat pad biopsy, BMP and / or ECHO (due to lower leg edema), and MRI of the back with contrast (due to hip numbness / tingling at times).
My only "symptom" other than fatigue is continued mild anemia for which a cause cannot be determined (they don't expect with only 10% marrow involvement that would result in a drop in RBC production but benign hematology, endo - nobody else can some up with a cause ... ).
Hopefully I'll remain smoldering for some time (oh and a little high on protein in urine at 200 g though BJ only shows on immunofixation, not UPEP thankfully) .
I'll post if anything becomes of the selective IgM drop.
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Low IgM antibody levels - any cause for concern?
After a bit of research it appears that selective IgM deficiency is very rare (except during certain myeloma treatments which result temporarily in the condition).
The same common theme pops up when searching this topic:
"Malignant neoplasms including multiple myeloma, sarcomas, and leukemias have all been found in association with isolated IgM deficiency."
The same common theme pops up when searching this topic:
"Malignant neoplasms including multiple myeloma, sarcomas, and leukemias have all been found in association with isolated IgM deficiency."
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Low IgM antibody levels - any cause for concern?
Hi Eric,
Your WBC are the ones that are directly fighting against infections, so you should be ok. Immunoglobulins IgG, IgA, and IgM are just proteins produced by a type of WBC. They are needed to specifically recognize viruses and bacteria so that the other WBC can destroy them, but there are plenty of WBC that do not need immunoglobulins to function.
In infection, you first produce IgM, which, if the infection continues, changes to IgG or IgA. So I assume that if you are constantly producing lower levels of WBC, then IgM levels are the first to go down, and the other immunoglobulins would follow later, or stay normal if you have enough IgM to cope with the infections and change to IgG and IgA. I am not an expert in the field though ...
Your WBC are the ones that are directly fighting against infections, so you should be ok. Immunoglobulins IgG, IgA, and IgM are just proteins produced by a type of WBC. They are needed to specifically recognize viruses and bacteria so that the other WBC can destroy them, but there are plenty of WBC that do not need immunoglobulins to function.
In infection, you first produce IgM, which, if the infection continues, changes to IgG or IgA. So I assume that if you are constantly producing lower levels of WBC, then IgM levels are the first to go down, and the other immunoglobulins would follow later, or stay normal if you have enough IgM to cope with the infections and change to IgG and IgA. I am not an expert in the field though ...
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finn
Re: Low IgM antibody levels - any cause for concern?
It looks like the research team has now found something that seems to be tied to the selectively low IgM that I've experienced most of this year (it was near the bottom in April, at 35, and in August it was 28, and this month it was 26):
Over the weekend, a malignancy of the reticuloendothelial system appeared in my online profile (pulled from tumor registry) .
I wonder if the low IgM is related to the reticuloendothelial malignancy as I've read that:
"an IgM deficiency is common with malignancies of the reticuloendothelial system" and now I have such a RES neoplasm diagnosis.
Thanks
FYI, on the low IgM and reticuloendothelial malignancy diagnosis, in case anyone is interested:
The cancer center has been closed since last Tuesday until today due to the Christmas holiday. I'm sure I'll receive a call today, or I'll contact them this week though i'm already scheduled for another full workup (normal myeloma labs plus an amyloid biopsy and abnormal BNP follow up from earlier this month). I'll be at the cancer center all next week.
My doctors would have never released a diagnosis, especially my first "cancer diagnosis" as of now, online without contacting me, but this apparently as a tumor registry update appeared in my profile without being "released," as is the case with progress notes / lab results.
As a cancer diagnosis other than myeloma or even amyloidosis, this is I admit a bit of a shock to me, though I knew that a low IgM as well as extended lower white count with high monocytes, as well as continued anemia that they did not believe was due to my 10% clonal plasma cell marrow infiltration, all can be related to a reticuloendothelial malignancy. Still, it's definitely not something that was on my radar, as it's very rare apparently.
With the exception of ringworm a year ago for the first time ever, a badly abscessed tooth in July, and, at present, another abscessed tooth issue that began 2 days ago, including at present fever, jaw swelling (my 2nd ever abscessed tooth), I've not had frequent obvious infections, which I guess is a good sign. Though the two recent tooth abscesses are interesting.
Over the weekend, a malignancy of the reticuloendothelial system appeared in my online profile (pulled from tumor registry) .
I wonder if the low IgM is related to the reticuloendothelial malignancy as I've read that:
"an IgM deficiency is common with malignancies of the reticuloendothelial system" and now I have such a RES neoplasm diagnosis.
Thanks
FYI, on the low IgM and reticuloendothelial malignancy diagnosis, in case anyone is interested:
The cancer center has been closed since last Tuesday until today due to the Christmas holiday. I'm sure I'll receive a call today, or I'll contact them this week though i'm already scheduled for another full workup (normal myeloma labs plus an amyloid biopsy and abnormal BNP follow up from earlier this month). I'll be at the cancer center all next week.
My doctors would have never released a diagnosis, especially my first "cancer diagnosis" as of now, online without contacting me, but this apparently as a tumor registry update appeared in my profile without being "released," as is the case with progress notes / lab results.
As a cancer diagnosis other than myeloma or even amyloidosis, this is I admit a bit of a shock to me, though I knew that a low IgM as well as extended lower white count with high monocytes, as well as continued anemia that they did not believe was due to my 10% clonal plasma cell marrow infiltration, all can be related to a reticuloendothelial malignancy. Still, it's definitely not something that was on my radar, as it's very rare apparently.
With the exception of ringworm a year ago for the first time ever, a badly abscessed tooth in July, and, at present, another abscessed tooth issue that began 2 days ago, including at present fever, jaw swelling (my 2nd ever abscessed tooth), I've not had frequent obvious infections, which I guess is a good sign. Though the two recent tooth abscesses are interesting.
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Low IgM antibody levels - any cause for concern?
Hi Pinball,
There are several different cell types that make up the reticuloendothelial system. Therefore, a diagnosis of "RES neoplasm" is nebulous – especially when it appears on your profile without discussion. At some centers, the billing department can even assign diagnoses based on their read of the chart; it is crazy but real!. So, without an explanation, this is very difficult to interpret and I would encourage you to speak with your doctors.
Keep us posted!
There are several different cell types that make up the reticuloendothelial system. Therefore, a diagnosis of "RES neoplasm" is nebulous – especially when it appears on your profile without discussion. At some centers, the billing department can even assign diagnoses based on their read of the chart; it is crazy but real!. So, without an explanation, this is very difficult to interpret and I would encourage you to speak with your doctors.
Keep us posted!
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Low IgM antibody levels - any cause for concern?
Hi Dr Landau,
The actual cancer diagnosis per the Tumor Registry is :
"Reticuloendotheliosis" - "Unstaged" .
All I can find regarding "reticuloendotheliosis" seems to be related to avian viruses, though medical dictionaries provide the following definition:
'Overgrowth of some part of the reticuloendothelial system (RES) causing isolated swelling of the bone marrow and, in severe cases, the destruction of the bones of the skull.'
I do have 3 items that fit the reticuloendotheliosis cancer diagnosis :
1) 'Bone marrow edema' of my tibia (proximal) since 2011, per MRI:
The marrow edema results in knee swelling, fluid, pain. My knee is actually the reason a rheumatoid specialist performed testing in 2010, seeking swelling root cause post knee surgery. No action was taken, but the swelling was much worse post surgery, the testing turned up nothing useful, but my 1st M spike appeared via an SPEP at that time: 0.10 g/dL IgG kappa, setting my MGUS to smoldering multiple myeloma journey into action at age 39.
2) Anemia not suspected as a result of SMM, which at 10% clonal PC barely fits SMM classification (a relatively low level of marrow infiltration):
It seems RES malignancies often result in anemia (as destruction of "older" RBC's is a duty of the RES, but RES issues can result in the destruction of too many / younger RBC's, causing anemia.
My hemoglobin has dropped from 14.3 to 12.8 over the past year (mild drop, 14-18 ideal range for my age / male); RDW is Hi, RBC count is Low.
3) Selective IgM deficiency NOT due to treatment side effects:
I read that selective IgM drops are often tied to RES malignancies and I've had a consistent drop in IgM, now down to "26" all of this year.
This site is great, as it allows me to pull basic info so that I know what to ask when on site with my providers.
Now that I know the basics regarding reticuloendotheliosis and what to ask next week - I'm sure all of my questions will be answered when on site at the cancer center. I'm fortunate to have lots of smart folks on my case
Thanks
The actual cancer diagnosis per the Tumor Registry is :
"Reticuloendotheliosis" - "Unstaged" .
All I can find regarding "reticuloendotheliosis" seems to be related to avian viruses, though medical dictionaries provide the following definition:
'Overgrowth of some part of the reticuloendothelial system (RES) causing isolated swelling of the bone marrow and, in severe cases, the destruction of the bones of the skull.'
I do have 3 items that fit the reticuloendotheliosis cancer diagnosis :
1) 'Bone marrow edema' of my tibia (proximal) since 2011, per MRI:
The marrow edema results in knee swelling, fluid, pain. My knee is actually the reason a rheumatoid specialist performed testing in 2010, seeking swelling root cause post knee surgery. No action was taken, but the swelling was much worse post surgery, the testing turned up nothing useful, but my 1st M spike appeared via an SPEP at that time: 0.10 g/dL IgG kappa, setting my MGUS to smoldering multiple myeloma journey into action at age 39.
2) Anemia not suspected as a result of SMM, which at 10% clonal PC barely fits SMM classification (a relatively low level of marrow infiltration):
It seems RES malignancies often result in anemia (as destruction of "older" RBC's is a duty of the RES, but RES issues can result in the destruction of too many / younger RBC's, causing anemia.
My hemoglobin has dropped from 14.3 to 12.8 over the past year (mild drop, 14-18 ideal range for my age / male); RDW is Hi, RBC count is Low.
3) Selective IgM deficiency NOT due to treatment side effects:
I read that selective IgM drops are often tied to RES malignancies and I've had a consistent drop in IgM, now down to "26" all of this year.
This site is great, as it allows me to pull basic info so that I know what to ask when on site with my providers.
Now that I know the basics regarding reticuloendotheliosis and what to ask next week - I'm sure all of my questions will be answered when on site at the cancer center. I'm fortunate to have lots of smart folks on my case
Thanks
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Low IgM antibody levels - any cause for concern?
Hi Pinball,
Reading through your posts, the one thing I keep asking myself is why a diagnosis of reticuloendotheliosis was made. Until you know that, I think anything you or the rest of us do in terms of wondering what the diagnosis might mean is pure speculation.
One of the reasons I wonder about the basis for the diagnosis is because myeloma can be the cause of a lot of the symptoms you describe. Myeloma can suppress uninvolved immunoglobulin levels; you'll often hear it called "immunoparesis". Myeloma also (obviously) can lead to reduced hemoglobin levels red blood cell counts.
So it would be useful to know why your doctors are concluding that you have this very unusual condition, reticuloendotheliosis, rather than your smoldering myeloma being at the root of some of the things you're seeing.
In any case, keep us posted on what you find out. And, of course, good luck!
Reading through your posts, the one thing I keep asking myself is why a diagnosis of reticuloendotheliosis was made. Until you know that, I think anything you or the rest of us do in terms of wondering what the diagnosis might mean is pure speculation.
One of the reasons I wonder about the basis for the diagnosis is because myeloma can be the cause of a lot of the symptoms you describe. Myeloma can suppress uninvolved immunoglobulin levels; you'll often hear it called "immunoparesis". Myeloma also (obviously) can lead to reduced hemoglobin levels red blood cell counts.
So it would be useful to know why your doctors are concluding that you have this very unusual condition, reticuloendotheliosis, rather than your smoldering myeloma being at the root of some of the things you're seeing.
In any case, keep us posted on what you find out. And, of course, good luck!
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JimNY
23 posts
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