Hi. I am new to this site.
In May of 2013, my doctor ordered the serum free light chain assay. My test result was that the kappas (and consequently the ratio) were elevated. I do not remember the numbers but because what little info I could find online I felt that since they were not in the hundreds, that they were of little concern and I did not comply with my primary doctor's request to go to a hematologist / oncologist.
Six months ago, May 2014, my doctor ordered the FLC test again and my kappas had increased (and of course the ratio increased). The numbers on that test were: kappa 28.82 mg/L (ref. range 3.30-19.40) with a ratio of 3.45 mg/L (ref range 0.26- 1.65), at which point on my doctor's insistence I went with my test numbers to see a hematologist who, even though the numbers had increased in a year, was tending to agree with me that they were not elevated to the point of indicating multiple myeloma etc.
So we agreed that I would get tested again in 3 months and see her one more time and, if there were no significant change, that we would not pursue a diagnosis. I held off for 5 months before getting retested. I just came from my annual check up (this morning) with my primary and thinking I could avoid keeping my follow up appointment with the hemo doctor, I asked my primary to give me the test results.
Now my primary care doctor is insisting I see the hemo again because the numbers went up again. My new numbers - kappa 43.83 mg/L (up from 28.82 five months ago), with the ratio of 4.56 (up from 3.45 five months ago).
In doing research today, and after reading many of the posts here in this site, I am still thinking that while the numbers are elevated compared to the reference range, that they are not elevated enough to pursue any kind of diagnosis. From what I am reading here and elsewhere, unless the kappas (or lambdas) are over 100 and the ratio over 50 that these numbers do not indicate disease or illness.
Can someone either confirm my understanding? Why is there a range referenced if having a result more than twice the ref range is not of any consequence? OR is it the fact that they on the increase an indication that something is wrong??
My doctor seems concerned that the numbers went up in a year and then went up considerably more in 5 months than they did in the year.
I guess I should mention that I am 62 and have full blown osteoporosis for ten years, had compression fracture of my spine two years ago and was diagnosed celiac 5 years ago.
I would appreciate if someone could explain what the elevation means - if anything. Do I need to go back to the hemo and, if so, why?
Thank you.
Suzi
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Serum FLC - how elevated do the numbers have to be?
Last edited by Suz on Wed Nov 12, 2014 5:52 pm, edited 1 time in total.
Re: Serum FLC - how elevated do the numbers have to be?
I think I totally screwed up my question.
The SFLC retest in May showed the kappas at 28.82 (up from a year before) and then INCREASED to 43.83 five months later (I got those results this morning). The ratio went from 3.45 in May to 4.56 on the most recent test. Can anyone tell me if any of that means anything?
Thank you,
Suzi
The SFLC retest in May showed the kappas at 28.82 (up from a year before) and then INCREASED to 43.83 five months later (I got those results this morning). The ratio went from 3.45 in May to 4.56 on the most recent test. Can anyone tell me if any of that means anything?
Thank you,
Suzi
Re: Serum FLC - how elevated do the numbers have to be?
Hi Suz,
Welcome to the forum.
A few things:
1. Have you been diagnosed with MGUS or smoldering multiple myeloma?
2. You really can't monitor this disease by just looking at your free light chain values or the free light chain ratio. There are other key markers that you need to monitor over time.
3. You should therefore be getting routinely monitored by a hematologist that specializes in multiple myeloma (not just a hematologist that sometimes sees a multiple myeloma patient now and then ... perhaps you already are working with hematologist that specializes in multiple myeloma?).
4. My last concern is regarding your "full blown" osteoporosis and spinal fracture. Has it been ruled out that these were not caused by multiple myeloma? If they were caused by multiple myeloma, then you would be classified as having symptomatic multiple myeloma and would require treatment.
This handbook will give you and idea of some of the items that one needs to track with any stage of multiple myeloma (MGUS through symptomatic multiple myeloma).
http://myeloma.org/pdfs/Patient_Handbook_2013.pdf
Welcome to the forum.
A few things:
1. Have you been diagnosed with MGUS or smoldering multiple myeloma?
2. You really can't monitor this disease by just looking at your free light chain values or the free light chain ratio. There are other key markers that you need to monitor over time.
3. You should therefore be getting routinely monitored by a hematologist that specializes in multiple myeloma (not just a hematologist that sometimes sees a multiple myeloma patient now and then ... perhaps you already are working with hematologist that specializes in multiple myeloma?).
4. My last concern is regarding your "full blown" osteoporosis and spinal fracture. Has it been ruled out that these were not caused by multiple myeloma? If they were caused by multiple myeloma, then you would be classified as having symptomatic multiple myeloma and would require treatment.
This handbook will give you and idea of some of the items that one needs to track with any stage of multiple myeloma (MGUS through symptomatic multiple myeloma).
http://myeloma.org/pdfs/Patient_Handbook_2013.pdf
Last edited by Multibilly on Wed Nov 12, 2014 6:53 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Serum FLC - how elevated do the numbers have to be?
Hi Suz, Are there other blood tests that you have had done, either at your PCP or the hematologist?
For Multiple myeloma the symptoms with the acronym of CRAB are of importance:
C - Calcium - excess calcium in the blood can indicate that bones are being damaged
R - Renal, i.e. kidney function. The creatinine test is one test taken.
A - Anemia.
B - Bone fractures,lesions and the like. Tests for this include skeletal X-ray surveys and other scans.
Also, a specialized blood test checking for the presence of monoclonal proteins (serum protein electrophoresis, SPEP) There is another similar test done for a 24 hour urine sample (UPEP).
So, if your current doctors are not doing these tests, I would venture to say that there are more tests to be done to rule out myeloma, or SMM. Hope that helps.
For Multiple myeloma the symptoms with the acronym of CRAB are of importance:
C - Calcium - excess calcium in the blood can indicate that bones are being damaged
R - Renal, i.e. kidney function. The creatinine test is one test taken.
A - Anemia.
B - Bone fractures,lesions and the like. Tests for this include skeletal X-ray surveys and other scans.
Also, a specialized blood test checking for the presence of monoclonal proteins (serum protein electrophoresis, SPEP) There is another similar test done for a 24 hour urine sample (UPEP).
So, if your current doctors are not doing these tests, I would venture to say that there are more tests to be done to rule out myeloma, or SMM. Hope that helps.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Serum FLC - how elevated do the numbers have to be?
Hi MultiBilly,
Thank you for responding. Ok, so the situation is this ... Back about nine years ago, I was sent to a hematologist/oncologist to be tested for multiple myeloma. The reasons were many. I had a full body bone scan that indicated a problem with my skull - that I had a bone disease effecting my skull. A consequent follow up xray indicated either Paget's or osteoporosis of the skull.
I had been having dexa scans every two years and the results went from borderline osteopenia to osteopenia to osteoporosis to the bones of a 90 year old woman ... all while still in my 50's. I had bone pain in the back and ribs. And because I also have petechia, I have always had a positive ANA (tested yearly because my mom died of a debilitating autoimmune disease). In spite of the positive ANA, other tests were routinely done for lupus, scleroaderma, etc ... always negative. I have, of course, been diagnosed with fibromyalgia - but who hasn't? I also have costochondritis along with degenerative disc disease etc.
The hematologist I went to in 2004 refused to test me for anything even though my (then) primary care doctor had done tests that indicated thrombocytopenia which, along with the skull problems and my unexplained bone pain back then, were his reasons for sending me to the hemo doctor.
THEN, after I was diagnosed with celiac, the general consensus was that ALL my other problems were a result of the undiagnosed celiac. After being gluten free for more than five years, my doctor expected my dexa numbers to be better and etc ... but that has not been the case and, after experiencing not just the compression fracture of my L1, but also calcium deposits and other problems with my shoulders in the last few years, my primary care decided to order a bunch of blood tests including the SFLC.
This hematologist that I saw back in June and who I have a follow up appointment with next week is the only one in this area that takes my medical coverage (specialists are almost impossible to find that take Medicare with Medicaid as the copay) around here.
So my question is are my elevated numbers of any concern as far as multiple myeloma or any other blood or bone disease. I mean, even if they are elevated and even though they have gone up in a year and a half (tested a total of three times in that time), I am having trouble taking the elevation seriously BECAUSE I keep reading numbers in the hundreds and thousands in all these posts. So even though my ratio is now almost three times the ref range, and my kappas are more than twice the reference range, DOES that elevation or the fact that they have increased in that short time mean ANYTHING?
At my first appointment with the hematologist six months ago, I asked her that question and she did not have an answer. I do not want to waste my time worrying or seeing doctors if those elevated numbers do not indicate a problem. And again, if those numbers, while seemingly substantially elevated (if you knew nothing about the numbers that multiple myeloma people have etc), then what does it mean that they are twice and three times the reference range?
Do you see my confusion? I am afraid that if I go back to the hemo, that she will want to do a BMB as the next step and I do not want to have one if she will be ordering it JUST because she does not know what those numbers being elevated (albeit still not the numbers that sent others down the road of a MGUS or smoldering or multiple myeloma or any other diagnosis).
The only other thing in my most recent blood work that was not normal was the IgM was slightly low (45 with a range of 50-300), and my HCT and RBC were slightly low.
I think my doctors are looking at the elevated kappas and ratio combined with my bad bones and the fracture along as reason to be thinking in terms of myeloma.
Suzi
Thank you for responding. Ok, so the situation is this ... Back about nine years ago, I was sent to a hematologist/oncologist to be tested for multiple myeloma. The reasons were many. I had a full body bone scan that indicated a problem with my skull - that I had a bone disease effecting my skull. A consequent follow up xray indicated either Paget's or osteoporosis of the skull.
I had been having dexa scans every two years and the results went from borderline osteopenia to osteopenia to osteoporosis to the bones of a 90 year old woman ... all while still in my 50's. I had bone pain in the back and ribs. And because I also have petechia, I have always had a positive ANA (tested yearly because my mom died of a debilitating autoimmune disease). In spite of the positive ANA, other tests were routinely done for lupus, scleroaderma, etc ... always negative. I have, of course, been diagnosed with fibromyalgia - but who hasn't? I also have costochondritis along with degenerative disc disease etc.
The hematologist I went to in 2004 refused to test me for anything even though my (then) primary care doctor had done tests that indicated thrombocytopenia which, along with the skull problems and my unexplained bone pain back then, were his reasons for sending me to the hemo doctor.
THEN, after I was diagnosed with celiac, the general consensus was that ALL my other problems were a result of the undiagnosed celiac. After being gluten free for more than five years, my doctor expected my dexa numbers to be better and etc ... but that has not been the case and, after experiencing not just the compression fracture of my L1, but also calcium deposits and other problems with my shoulders in the last few years, my primary care decided to order a bunch of blood tests including the SFLC.
This hematologist that I saw back in June and who I have a follow up appointment with next week is the only one in this area that takes my medical coverage (specialists are almost impossible to find that take Medicare with Medicaid as the copay) around here.
So my question is are my elevated numbers of any concern as far as multiple myeloma or any other blood or bone disease. I mean, even if they are elevated and even though they have gone up in a year and a half (tested a total of three times in that time), I am having trouble taking the elevation seriously BECAUSE I keep reading numbers in the hundreds and thousands in all these posts. So even though my ratio is now almost three times the ref range, and my kappas are more than twice the reference range, DOES that elevation or the fact that they have increased in that short time mean ANYTHING?
At my first appointment with the hematologist six months ago, I asked her that question and she did not have an answer. I do not want to waste my time worrying or seeing doctors if those elevated numbers do not indicate a problem. And again, if those numbers, while seemingly substantially elevated (if you knew nothing about the numbers that multiple myeloma people have etc), then what does it mean that they are twice and three times the reference range?
Do you see my confusion? I am afraid that if I go back to the hemo, that she will want to do a BMB as the next step and I do not want to have one if she will be ordering it JUST because she does not know what those numbers being elevated (albeit still not the numbers that sent others down the road of a MGUS or smoldering or multiple myeloma or any other diagnosis).
The only other thing in my most recent blood work that was not normal was the IgM was slightly low (45 with a range of 50-300), and my HCT and RBC were slightly low.
I think my doctors are looking at the elevated kappas and ratio combined with my bad bones and the fracture along as reason to be thinking in terms of myeloma.
Suzi
Re: Serum FLC - how elevated do the numbers have to be?
Hi,
Just wanted to say that my husband was diagnosed with IgA lambda myeloma and his elevated FLC was only 64, not in the hundreds/thousands.
I would follow up just to be on the safe side. If you do have myeloma, treating it sooner would be a major benefit then to letting it run rampant.
Just wanted to say that my husband was diagnosed with IgA lambda myeloma and his elevated FLC was only 64, not in the hundreds/thousands.
I would follow up just to be on the safe side. If you do have myeloma, treating it sooner would be a major benefit then to letting it run rampant.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Serum FLC - how elevated do the numbers have to be?
Hi
Like Blair's husband, I am also IgA lambda. My light chains were only 152 on diagnosis, which is pretty low compared to many myeloma patients. Without wishing to unduly worry you, very often the level of light chains does not equate to the level of damage that myeloma can do to a body. I have heard of people being diagnosed after something showed up in a routine blood test and their light chains turned out to be in the thousands, but felt perfectly well. Equally, others have problems on seemingly low levels.
I also have amyloidosis, which affects my kidneys, liver and spleen. It was swelling in my ankles and legs that promoted my visit to the doctor that eventually led to my diagnosis. Apparently, I will be in trouble again if my light chains rise above 30.
I really think you should see a haematologist to put your mind at rest.
Best wishes
Alice
Like Blair's husband, I am also IgA lambda. My light chains were only 152 on diagnosis, which is pretty low compared to many myeloma patients. Without wishing to unduly worry you, very often the level of light chains does not equate to the level of damage that myeloma can do to a body. I have heard of people being diagnosed after something showed up in a routine blood test and their light chains turned out to be in the thousands, but felt perfectly well. Equally, others have problems on seemingly low levels.
I also have amyloidosis, which affects my kidneys, liver and spleen. It was swelling in my ankles and legs that promoted my visit to the doctor that eventually led to my diagnosis. Apparently, I will be in trouble again if my light chains rise above 30.
I really think you should see a haematologist to put your mind at rest.
Best wishes
Alice
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AliceNorth
Re: Serum FLC - how elevated do the numbers have to be?
Hello Suz,
Welcome to the forum.
We get the sense from your question and the information you've provided that what you are really asking is
"Given my medical history, are my free light chain numbers high enough that I should have a bone marrow biopsy done as well as other additional tests?"
While we tend to agree with Blair and Alice that, all things considered, additional testing would be a good idea, we realize you're also facing some constraints.
That said, what makes it difficult to answer your question in your particular situation is that it isn't clear whether you've already had several key tests done that are relevant to your question.
For example, what are your blood calcium level and your creatinine levels? What about your hemoglobin levels?
Most importantly, have you had serum or urine protein electrophoresis tests (SPEP / UPEP) done, and immunofixation electrophoresis (IFE) tests done? If so, what were the results?
Although people here in the forum regularly report their free light chain levels, this is mainly because they are useful for monitoring purposes. Other lab results -- like those we highlighted above -- are much more important when it comes to making a diagnosis of a plasma disorder.
To see why we say that, see the diagnostic criteria for myeloma-related disorders here,
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
combined with this recent update
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
As you'll see, free light chain levels and ratios play a role only in some very specific situations when it comes to diagnosing a myeloma-related condition.
We can give you better guidance about what to do if you let us know what other lab tests you may have had done and what their results were.
Good luck!
Welcome to the forum.
We get the sense from your question and the information you've provided that what you are really asking is
"Given my medical history, are my free light chain numbers high enough that I should have a bone marrow biopsy done as well as other additional tests?"
While we tend to agree with Blair and Alice that, all things considered, additional testing would be a good idea, we realize you're also facing some constraints.
That said, what makes it difficult to answer your question in your particular situation is that it isn't clear whether you've already had several key tests done that are relevant to your question.
For example, what are your blood calcium level and your creatinine levels? What about your hemoglobin levels?
Most importantly, have you had serum or urine protein electrophoresis tests (SPEP / UPEP) done, and immunofixation electrophoresis (IFE) tests done? If so, what were the results?
Although people here in the forum regularly report their free light chain levels, this is mainly because they are useful for monitoring purposes. Other lab results -- like those we highlighted above -- are much more important when it comes to making a diagnosis of a plasma disorder.
To see why we say that, see the diagnostic criteria for myeloma-related disorders here,
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
combined with this recent update
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
As you'll see, free light chain levels and ratios play a role only in some very specific situations when it comes to diagnosing a myeloma-related condition.
We can give you better guidance about what to do if you let us know what other lab tests you may have had done and what their results were.
Good luck!
Re: Serum FLC - how elevated do the numbers have to be?
Hi Suzi,
You've gotten good advice from other folks and from the Beacon staff in this thread. I just have a couple things to add.
First, it would make sense to get the additional urine and blood/serum (it took me awhile to realize that blood and serum are synonymous in this context) tests that others have mentioned here done first. And then, depending on the results of those, you might need to have a bone marrow biopsy (BMB) performed.
Second, if you do need a BMB, it's not all that bad of a procedure. I've had 7 of them and I'm still here to talk about it.
Third, if you are diagnosed with myeloma (smoldering or active), if at all possible, it is best to be treated by a myeloma specialist. Multiple myeloma is a complex disease and there are new advances in treatment occurring rapidly. So you want to be treated by someone who lives and breathes this stuff every day. The Beacon's list of treatment centers (https://myelomabeacon.org/resources/treatment-centers/) is a good place to start in finding a specialist, and other folks on the Beacon forums can give advice on this as well.
Best wishes and keep us posted on how things go for you.
Mike
You've gotten good advice from other folks and from the Beacon staff in this thread. I just have a couple things to add.
First, it would make sense to get the additional urine and blood/serum (it took me awhile to realize that blood and serum are synonymous in this context) tests that others have mentioned here done first. And then, depending on the results of those, you might need to have a bone marrow biopsy (BMB) performed.
Second, if you do need a BMB, it's not all that bad of a procedure. I've had 7 of them and I'm still here to talk about it.
Third, if you are diagnosed with myeloma (smoldering or active), if at all possible, it is best to be treated by a myeloma specialist. Multiple myeloma is a complex disease and there are new advances in treatment occurring rapidly. So you want to be treated by someone who lives and breathes this stuff every day. The Beacon's list of treatment centers (https://myelomabeacon.org/resources/treatment-centers/) is a good place to start in finding a specialist, and other folks on the Beacon forums can give advice on this as well.
Best wishes and keep us posted on how things go for you.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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