I am new to this board but have used a support board back in 2007 when I was going through breast cancer.
Fast forward to 2012. My oncologist tells me I have this thing called MGUS. Not to worry; we were just going to keep an eye on my numbers. He died this past year, and I started with a new oncologist in February. She did all the blood work as a starting point with her. She was concerned because my Lymph % was 51.8 with nothing other of levels out. I have no other symptom . Three months later my Lymph% Down to 45.2 but my other scores are:
IgG - 682
IgA - 141
IgM - 69
Serum kappa - 9.96
Serum lambda - 3.45
Kappa/lambda free - 2.89
No monoclonal band observed
They ordered a bone marrow biopsy which I had today. I have to wait two weeks to get results of the bone marrow biopsy
What should I be thinking? Have I gone from MGUS to multiple myeloma?
Debi
Forums
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
Re: Have I progressed from MGUS to multiple myeloma?
I posted this yesterday as a guest and since have registered . The information I am reading here has been so much help. They tell me two week until the bone marrow results come back. I don't know if I am going to last two weeks; my nerves are shot.
Moderator's Note: We've updated Debic's original posting so that it links to her forum account.
Moderator's Note: We've updated Debic's original posting so that it links to her forum account.
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
Re: Have I progressed from MGUS to multiple myeloma?
I have the same question as you so maybe someone can help us both.
In 1996 I needed test done for vision changes and one was a spinal tap that came back as follows:
Immunofixation serum interpreted as monoclonal IgA kappa
Immunofix ID IGG - CSF 7.3 mg/dl ref range (0.5-5.9)
Albumin 12.1 mg/dl ref range (13.9-24.6)
IGG / Albumin CSF ratio 0.603 ref range (0.040-0.312)
In 1996 I was never told I had MGUS, but fast forward to 2015 and I moved to a new city and got new doctors and my doctor did a SPEP and it showed the following out of range;
Chloride - 93 low (ref range 98-110)
Protein - Total - 10.0 high (ref range 6.1-8.1)
Globulin - 6.4 high (ref range 1.9-3.7)
Albumin/globulin ratio - 0.6 low (ref range 1.0-2.5)
I went back and looked at past labs (past doctor / hospital had a patient portal) and saw the 1996 labs and noticed in 2010 my labs started going everywhere:
Lymph's high
Neutrophils low
Calcium runs from low of 9.8 to high of 10.9 (ref 8.5-10.5)
Potassium from low of 4.5 to high of 6.1 (ref 3.3-4.8)
Plate's run from low of 90 to the highest of 124 (ref range of 135-371)
Chloride runs low around 91-92 (ref 95-105)
Sodium runs low 130-132 (ref 135-145)
My protein done by SPEP was 8.6 g/dl (ref range 6.1-8.4) in March 2014, then Dec 2014 it was 9.6 g/dl and of course now 10 g/dl.
A little more history ... In 2010 I started complaining of pain, tingling, and what felt like electrical shock in my hands and had an EMG that confirmed carpal tunnel. Had surgery that did not relieve the pain, so they did it again, which helped a little, then it went to my feet and legs and they diagnosed me with peripheral neuropathy (note I am also diabetic).
I then started complaining that it felt like something was chewing on my bones. I had all over body pain and it felt like my muscles were not strong enough to support my bones, my hips felt like they were going to lock up when I walked, and my legs felt weak, my balance was off, I had like a mental fog most of the time, had low back pain and neck pain and always felt totally exhausted.
I was seen by my GP, neurology, rheumotology, infectious disease, endocrinolgy, cardiology, pain management, ortho and I'm sure I may have missed someone, but not one of them ever mentioned MGUS or multiple myeloma to me. They simply blamed it all on my neuropathy.
My new GP referred me to a specialist and on August 3, 2015 was the first time I saw an oncologist, but he didn't seem concerned much but did order a skeletal survey and CT scan, which I went to have done August 5, 2015. The CT was ordered with contrast, but they wouldn't do it that way because my creatinine was elevated, but did the scan without. Does anyone know if this would show up the same things?
So it will be about 2 weeks before I meet with the doctor to get the results but, in the mean time, does anyone have any input on the current labs I posted or the direction it looks like this may be heading?
Thanks and sorry for the long post.
In 1996 I needed test done for vision changes and one was a spinal tap that came back as follows:
Immunofixation serum interpreted as monoclonal IgA kappa
Immunofix ID IGG - CSF 7.3 mg/dl ref range (0.5-5.9)
Albumin 12.1 mg/dl ref range (13.9-24.6)
IGG / Albumin CSF ratio 0.603 ref range (0.040-0.312)
In 1996 I was never told I had MGUS, but fast forward to 2015 and I moved to a new city and got new doctors and my doctor did a SPEP and it showed the following out of range;
Chloride - 93 low (ref range 98-110)
Protein - Total - 10.0 high (ref range 6.1-8.1)
Globulin - 6.4 high (ref range 1.9-3.7)
Albumin/globulin ratio - 0.6 low (ref range 1.0-2.5)
I went back and looked at past labs (past doctor / hospital had a patient portal) and saw the 1996 labs and noticed in 2010 my labs started going everywhere:
Lymph's high
Neutrophils low
Calcium runs from low of 9.8 to high of 10.9 (ref 8.5-10.5)
Potassium from low of 4.5 to high of 6.1 (ref 3.3-4.8)
Plate's run from low of 90 to the highest of 124 (ref range of 135-371)
Chloride runs low around 91-92 (ref 95-105)
Sodium runs low 130-132 (ref 135-145)
My protein done by SPEP was 8.6 g/dl (ref range 6.1-8.4) in March 2014, then Dec 2014 it was 9.6 g/dl and of course now 10 g/dl.
A little more history ... In 2010 I started complaining of pain, tingling, and what felt like electrical shock in my hands and had an EMG that confirmed carpal tunnel. Had surgery that did not relieve the pain, so they did it again, which helped a little, then it went to my feet and legs and they diagnosed me with peripheral neuropathy (note I am also diabetic).
I then started complaining that it felt like something was chewing on my bones. I had all over body pain and it felt like my muscles were not strong enough to support my bones, my hips felt like they were going to lock up when I walked, and my legs felt weak, my balance was off, I had like a mental fog most of the time, had low back pain and neck pain and always felt totally exhausted.
I was seen by my GP, neurology, rheumotology, infectious disease, endocrinolgy, cardiology, pain management, ortho and I'm sure I may have missed someone, but not one of them ever mentioned MGUS or multiple myeloma to me. They simply blamed it all on my neuropathy.
My new GP referred me to a specialist and on August 3, 2015 was the first time I saw an oncologist, but he didn't seem concerned much but did order a skeletal survey and CT scan, which I went to have done August 5, 2015. The CT was ordered with contrast, but they wouldn't do it that way because my creatinine was elevated, but did the scan without. Does anyone know if this would show up the same things?
So it will be about 2 weeks before I meet with the doctor to get the results but, in the mean time, does anyone have any input on the current labs I posted or the direction it looks like this may be heading?
Thanks and sorry for the long post.
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Blair - Name: Blair
- Who do you know with myeloma?: ?
- When were you/they diagnosed?: 1996
- Age at diagnosis: 36
Re: Have I progressed from MGUS to multiple myeloma?
Blair,
I am sorry I know how you feel with the waiting. Have they done all the bloodwork, checking your kappa / lambda ratio? I am really new to this and hope someone with more knowledge can help us.
Debi
I am sorry I know how you feel with the waiting. Have they done all the bloodwork, checking your kappa / lambda ratio? I am really new to this and hope someone with more knowledge can help us.
Debi
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
Re: Have I progressed from MGUS to multiple myeloma?
Debi,
I haven't seen anything at all with lambda on it, so I'm not sure. I guess that may be another question I need to ask. I know my GP had something about the kappa ratio, but I don't know if he was referring to kappa / lambda.
The oncologist ordered all new blood work, so I will ask for a copy of it when I see him again. It's all pretty confusing and after reading some posts I think I better see if the doctor I am going to is up to date on MGUS and multiple myeloma.
I haven't seen anything at all with lambda on it, so I'm not sure. I guess that may be another question I need to ask. I know my GP had something about the kappa ratio, but I don't know if he was referring to kappa / lambda.
The oncologist ordered all new blood work, so I will ask for a copy of it when I see him again. It's all pretty confusing and after reading some posts I think I better see if the doctor I am going to is up to date on MGUS and multiple myeloma.
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Blair - Name: Blair
- Who do you know with myeloma?: ?
- When were you/they diagnosed?: 1996
- Age at diagnosis: 36
Re: Have I progressed from MGUS to multiple myeloma?
Hi Blair and Debi,
MGUS, smoldering multiple myeloma, and multiple myeloma are very similar diseases. Some would say they are just different stages of the same disease, but I think that is an oversimplification.
They are all similar diseases because one or more "mutant" (abnormal) plasma cells, a type of white blood, has started reproducing at a more rapid rate than is normal, so that these particular, "monoclonal" plasma cells are over-represented in the body.
The plasma cells are called "monoclonal" because they are all "clones" (duplicates) of the original mutant plasma cell.
Plasma cells produce immunoglobulins such as IgG and IgA. Your body needs immunoglobulins to fight off infections and other types of disease. But, when you have MGUS and multiple myeloma, the monoclonal plasma cells cause the body to overproduce one of those types of immunoglobulins. Your body will now have "polyclonal immunoglobulins", which are the usual, healthy immunoglobulins, but also "monoclonal immunoglobulins", which is the immunoglobulin produced by the mutant, monoclonal plasma cells.
So what's the difference between MGUS, smoldering myeloma, and multiple myeloma? It's mainly an issue of how advanced the disease is.
With MGUS, there are only a limited number of monoclonal plasma cells in the body. When a bone marrow biopsy is done, only a limited number of mutant plasma cells are found in the marrow (which is where you usually find plasma cells). And you don't find much evidence of monoclonal immunoglobulins.
With smoldering myeloma, there are more monoclonal plasma cells in the marrow, and typically higher signs of monoclonal immunoglobulins. But the disease is still not so far along that it is causing damage to other parts of the body, so it is usually not treated.
Finally, with multiple myeloma, the disease has advanced to the stage where it is either lowering the production of other necessary blood cells, causing damage to the kidneys or bones, and/or raising the level of calcium in the blood due to the bone damage it's causing. When the disease reaches this stage, it really needs to be treated.
The reason I say the diseases are related, but not necessarily the same, is that people with MGUS do not often see their disease progress to smoldering myeloma and then to multiple myeloma. In fact, such progression is actually uncommon. The risk of progression to a point where treatment is necessary is higher in smoldering myeloma than in MGUS, but some smoldering myeloma patients never see their disease advance to the point where treatment is required. People diagnosed with multiple myeloma, on the other hand, definitely require treatment.
So, to me, the diseases are not quite the same.
To determine if you have MGUS or smoldering myeloma, the key tests you need to have done are a serum protein electrophoresis (SPEP - estimates the amount of monoclonal immunoglobulin present, aka your "M-spike"), immunofixation (determines whether a monoclonal immunoglobulin is present and what type it is, but not how much), and perhaps a bone marrow biopsy (determines the plasma cell percentage of the bone marrow).
There are other tests that are necessary to distinguish between smoldering myeloma and multiple myeloma.
I know I haven't answered all your questions, but hopefully I've given you a better understanding so that you can understand some really helpful postings in these related threads here in the forum:
"MGUS diagnosis today - confused" (started Aug 4, 2015)
"Wife just diagnosed with smoldering myeloma (age 44)" (started Aug 4, 2015)
"Father may have multiple myeloma - seeking advice" (started Aug 2, 2015)
Cheryl G also has a very useful posting here which will help you understand more about free light chains and why they also are useful in the diagnosis and monitoring of MGUS and myeloma patients.
If you read those discussions, and the links listed in them, and still have more questions, please let us know, and we'll try to help some more.
Good luck!
MGUS, smoldering multiple myeloma, and multiple myeloma are very similar diseases. Some would say they are just different stages of the same disease, but I think that is an oversimplification.
They are all similar diseases because one or more "mutant" (abnormal) plasma cells, a type of white blood, has started reproducing at a more rapid rate than is normal, so that these particular, "monoclonal" plasma cells are over-represented in the body.
The plasma cells are called "monoclonal" because they are all "clones" (duplicates) of the original mutant plasma cell.
Plasma cells produce immunoglobulins such as IgG and IgA. Your body needs immunoglobulins to fight off infections and other types of disease. But, when you have MGUS and multiple myeloma, the monoclonal plasma cells cause the body to overproduce one of those types of immunoglobulins. Your body will now have "polyclonal immunoglobulins", which are the usual, healthy immunoglobulins, but also "monoclonal immunoglobulins", which is the immunoglobulin produced by the mutant, monoclonal plasma cells.
So what's the difference between MGUS, smoldering myeloma, and multiple myeloma? It's mainly an issue of how advanced the disease is.
With MGUS, there are only a limited number of monoclonal plasma cells in the body. When a bone marrow biopsy is done, only a limited number of mutant plasma cells are found in the marrow (which is where you usually find plasma cells). And you don't find much evidence of monoclonal immunoglobulins.
With smoldering myeloma, there are more monoclonal plasma cells in the marrow, and typically higher signs of monoclonal immunoglobulins. But the disease is still not so far along that it is causing damage to other parts of the body, so it is usually not treated.
Finally, with multiple myeloma, the disease has advanced to the stage where it is either lowering the production of other necessary blood cells, causing damage to the kidneys or bones, and/or raising the level of calcium in the blood due to the bone damage it's causing. When the disease reaches this stage, it really needs to be treated.
The reason I say the diseases are related, but not necessarily the same, is that people with MGUS do not often see their disease progress to smoldering myeloma and then to multiple myeloma. In fact, such progression is actually uncommon. The risk of progression to a point where treatment is necessary is higher in smoldering myeloma than in MGUS, but some smoldering myeloma patients never see their disease advance to the point where treatment is required. People diagnosed with multiple myeloma, on the other hand, definitely require treatment.
So, to me, the diseases are not quite the same.
To determine if you have MGUS or smoldering myeloma, the key tests you need to have done are a serum protein electrophoresis (SPEP - estimates the amount of monoclonal immunoglobulin present, aka your "M-spike"), immunofixation (determines whether a monoclonal immunoglobulin is present and what type it is, but not how much), and perhaps a bone marrow biopsy (determines the plasma cell percentage of the bone marrow).
There are other tests that are necessary to distinguish between smoldering myeloma and multiple myeloma.
I know I haven't answered all your questions, but hopefully I've given you a better understanding so that you can understand some really helpful postings in these related threads here in the forum:
"MGUS diagnosis today - confused" (started Aug 4, 2015)
"Wife just diagnosed with smoldering myeloma (age 44)" (started Aug 4, 2015)
"Father may have multiple myeloma - seeking advice" (started Aug 2, 2015)
Cheryl G also has a very useful posting here which will help you understand more about free light chains and why they also are useful in the diagnosis and monitoring of MGUS and myeloma patients.
If you read those discussions, and the links listed in them, and still have more questions, please let us know, and we'll try to help some more.
Good luck!
-
JimNY
Re: Have I progressed from MGUS to multiple myeloma?
JimNY,
Thank you so much for your reply. I read all of the threads you listed. It seems the more I read, the more I understand, but also the more questions I have.
In 2007, I had breast cancer and my oncologist said to me give me a year and I will give you your life. I felt I had a fighting chance. With this, not so much.
I have known about the MGUS since 2012. In February of 2015, my kappa/lambda free was 0.82. Now July it is 2.86. From what you had me read, I am IgG lambda. 862 is my IgG, 141 IgG, and 69 IgM. Does the fact that it went up so fast mean it is progressing at an aggressive speed?
I had the same oncologist for many years. My new oncologist is not forthcoming with information. See her in two weeks for BMB results. In the meantime I am going crazy.
Debi
Thank you so much for your reply. I read all of the threads you listed. It seems the more I read, the more I understand, but also the more questions I have.
In 2007, I had breast cancer and my oncologist said to me give me a year and I will give you your life. I felt I had a fighting chance. With this, not so much.
I have known about the MGUS since 2012. In February of 2015, my kappa/lambda free was 0.82. Now July it is 2.86. From what you had me read, I am IgG lambda. 862 is my IgG, 141 IgG, and 69 IgM. Does the fact that it went up so fast mean it is progressing at an aggressive speed?
I had the same oncologist for many years. My new oncologist is not forthcoming with information. See her in two weeks for BMB results. In the meantime I am going crazy.
Debi
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
Re: Have I progressed from MGUS to multiple myeloma?
Hi Debi
The FLC ratio isn't the only marker to look at in the case of MGUS / smoldering multiple myeloma / multiple myeloma, and most importantly isn't a marker to look at in isolation! There are a couple of key reasons for this:
(a) There is quite a bit of variability in the test, meaning there is a good chance that the number given isn't as accurate as it could be simply because of the way the test was prepared and performed.
(b) The FLC ratio varies because of natural body processes which may be independent of MGUS. Our ratio was tested 3 times over a 10 months period and the results were: 5.9, 4.5, and recently 5.0. When I asked our myeloma specialist if we should worry about the increase from 4.5 to 5.0, he replied that if we were to do the test 3 times today, the numbers probably would differ every time.
What doctors look at most importantly with MGUS (IgG lambda in your case) is if the M-protein (total IgG) is going up, and for the ratio if the lambda (your case) is going up - significantly. The new guidelines consider the transition from smoldering multiple myeloma to (symptomatic) multiple myeloma IF the value of the involved FLC (lambda in your case) goes beyond 100 AND IF the ratio of involved (lambda for you) over uninvolved (kappa for you) passes 100.
On top of the above, in your case your IgG is at 800, which if I am not mistaken probably is still within the "accepted normal range" for your lab. This means your bad IgG should still be low.
Hope this helps.
The FLC ratio isn't the only marker to look at in the case of MGUS / smoldering multiple myeloma / multiple myeloma, and most importantly isn't a marker to look at in isolation! There are a couple of key reasons for this:
(a) There is quite a bit of variability in the test, meaning there is a good chance that the number given isn't as accurate as it could be simply because of the way the test was prepared and performed.
(b) The FLC ratio varies because of natural body processes which may be independent of MGUS. Our ratio was tested 3 times over a 10 months period and the results were: 5.9, 4.5, and recently 5.0. When I asked our myeloma specialist if we should worry about the increase from 4.5 to 5.0, he replied that if we were to do the test 3 times today, the numbers probably would differ every time.
What doctors look at most importantly with MGUS (IgG lambda in your case) is if the M-protein (total IgG) is going up, and for the ratio if the lambda (your case) is going up - significantly. The new guidelines consider the transition from smoldering multiple myeloma to (symptomatic) multiple myeloma IF the value of the involved FLC (lambda in your case) goes beyond 100 AND IF the ratio of involved (lambda for you) over uninvolved (kappa for you) passes 100.
On top of the above, in your case your IgG is at 800, which if I am not mistaken probably is still within the "accepted normal range" for your lab. This means your bad IgG should still be low.
Hope this helps.
-
Cedb
Re: Have I progressed from MGUS to multiple myeloma?
I truly appreciate all of the people on this site for their patience and understanding to us newbies who have so many questions. You answer so quickly and in a way we understand.
For me this whole journey started because I had a high 51.8 lymph % on my regular oncology appointment post breast cancer. They said I had MGUS and it was nothing to worry about; they would monitor my blood work.
That was in 2012. I believed them and didn't worry. I started with a new oncologist in February 2015 and it has been a roller coaster ride of test.
My lymph%, which I have not even seen mentioned here, went down to 45.2, but because of the following results she ordered a BMB
IgG - 682 mg/dl
IgM - 69
IgA - 141
Serum kappa - 9.96 mg/l
Serum lambda - 3.45
Ratio - 2.89
M spike. No monoclonal band observed
All CBC within range
Creatine - 0.8
Calcium - 9.4mg/dl
Total protein - 6.2 g/dl
B2M - 1.65
I think I have listed all results I have seen you ask about.
What does this all mean? Have to wait two weeks for BMB.
Thank you,
Debi
For me this whole journey started because I had a high 51.8 lymph % on my regular oncology appointment post breast cancer. They said I had MGUS and it was nothing to worry about; they would monitor my blood work.
That was in 2012. I believed them and didn't worry. I started with a new oncologist in February 2015 and it has been a roller coaster ride of test.
My lymph%, which I have not even seen mentioned here, went down to 45.2, but because of the following results she ordered a BMB
IgG - 682 mg/dl
IgM - 69
IgA - 141
Serum kappa - 9.96 mg/l
Serum lambda - 3.45
Ratio - 2.89
M spike. No monoclonal band observed
All CBC within range
Creatine - 0.8
Calcium - 9.4mg/dl
Total protein - 6.2 g/dl
B2M - 1.65
I think I have listed all results I have seen you ask about.
What does this all mean? Have to wait two weeks for BMB.
Thank you,
Debi
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Debic - Name: Debi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 57
Re: Have I progressed from MGUS to multiple myeloma?
Debi
No monoclonal band means there is no heavy chain bad protein produced (e.g. IgG, IgA or IgM). It does not mean you do not have MGUS, however, as some rare(r) forms of MGUS do not produce the heavy chain part of the protein (they are not worse MGUS ... they are just different). In your case, I guess they are concerned about your out-of-range ratio. But, to be honest, a ratio of 2.85, although abnormal, is not a huge cause of concern either. Myeloma-confirmed FLC ratios run into the 100s, 1000s and sometimes 100000s in cases of bad myeloma.
The new guidelines state that a ratio of 100 with an involved immunoglobulin value of 100 is a "myeloma defining event". You are at 9.96 kappa and 2.89 ratio. I am not a doctor, but I would not necessarily worry too much.
Regarding white blood cells ... I am told that it is not a cause of concern in MGUS / myeloma unless there are recurring infections or signs of a heavy disease burden (i.e., numbers much higher than yours). We too started on the MGUS journey because the local GP found a lower white blood cell count than the "published" normal range (2.8 vs 4.0). This, however, did not concern our myeloma specialist at all, provided the clinical presentation was good (no infection, no pain, no unexplained fatigue, no bruising ...).
Your other key markers are also in range.
Wait for the BMB results and do let us know, but I would sleep well in your case.
No monoclonal band means there is no heavy chain bad protein produced (e.g. IgG, IgA or IgM). It does not mean you do not have MGUS, however, as some rare(r) forms of MGUS do not produce the heavy chain part of the protein (they are not worse MGUS ... they are just different). In your case, I guess they are concerned about your out-of-range ratio. But, to be honest, a ratio of 2.85, although abnormal, is not a huge cause of concern either. Myeloma-confirmed FLC ratios run into the 100s, 1000s and sometimes 100000s in cases of bad myeloma.
The new guidelines state that a ratio of 100 with an involved immunoglobulin value of 100 is a "myeloma defining event". You are at 9.96 kappa and 2.89 ratio. I am not a doctor, but I would not necessarily worry too much.
Regarding white blood cells ... I am told that it is not a cause of concern in MGUS / myeloma unless there are recurring infections or signs of a heavy disease burden (i.e., numbers much higher than yours). We too started on the MGUS journey because the local GP found a lower white blood cell count than the "published" normal range (2.8 vs 4.0). This, however, did not concern our myeloma specialist at all, provided the clinical presentation was good (no infection, no pain, no unexplained fatigue, no bruising ...).
Your other key markers are also in range.
Wait for the BMB results and do let us know, but I would sleep well in your case.
-
Cedb
47 posts
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