I'm back! I just got my results from the free light chain assay. Here are the results:
Free Kappa Light Chains 15.70 (3.30 - 19.40)
Free Lambda Light Chains 7.48 (5.71 - 26.30)
Free Kappa/Lambda Ratio 2.10 (0.26-1.65) H
So the ratio is elevated. I'm a bit confused by my doctor's reaction because he said this isn't a big deal (that it's only elevated slightly and the other two readings are normal anyway). I thought that elevated ratio (even though it's not as bad as the values I've seen on this board) was a cause for some concern.
I also picked up my original results, turns out my albumin was elevated as well:
Total protein 81 (63-80) H
Albumin 48.4 (33.0-48) H
Alpha 1 Glob 2.6 (2.2-4.0)
Alpha 2 Glob 6.2 (5.0-10.0)
Beta 1 Glob 4.5 (3.0-6.0)
Beta 2 Glob 3.2 (2.0-5.0)
Gamma Glob 16.1 (5.0-16.0) H
Monoclonal#1 6.8 <- Monoclonal protein identified as IgG
kappa. Recommend 24-hour urine collection for urine protein
electrophoresis if appropriate.
My next steps are (I have the requisition, will do it on Monday):
- Redoing the electrophoresis
- IgG, IgA, IgM quantification (the specific immunoglobulin test)
- IgD and IgE (not sure why but hey whatever)
He wrote a note on the requisition to consult pathologist for the serum test (not too sure why either).
Apparently albumin is elevated in dehydrated people, so I'm going to do my best to drink appropriate amounts of liquids.
So there we go.
Forums
Re: Suspected MGUS
Good luck with the ongoing testing, Catsunami.
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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: Suspected MGUS
Hi Catsunami,
According to the folks that created the free light chain assay test (The Binding Site), a normal kappa + normal lambda FLC value that is accompanied by an elevated FLC ratio can "possibly" signal bone marrow suppression that is occurring alongside the monoclonal gammopathy (you know already that you definitely have some sort of monoclonal gammopathy given your lab results thus far). However, if you were suffering from bone marrow suppression, one or more of your CBC lab results would be off - which they aren't. So, that is good news and your doc is probably right that it is nothing to be concerned with.
It never hurts to get a second opinion from a pathologist that processes and interprets these sorts of tests all the time. I would be encouraged that your doc is being so thorough.
Best of luck on the next round of tests.
According to the folks that created the free light chain assay test (The Binding Site), a normal kappa + normal lambda FLC value that is accompanied by an elevated FLC ratio can "possibly" signal bone marrow suppression that is occurring alongside the monoclonal gammopathy (you know already that you definitely have some sort of monoclonal gammopathy given your lab results thus far). However, if you were suffering from bone marrow suppression, one or more of your CBC lab results would be off - which they aren't. So, that is good news and your doc is probably right that it is nothing to be concerned with.
It never hurts to get a second opinion from a pathologist that processes and interprets these sorts of tests all the time. I would be encouraged that your doc is being so thorough.
Best of luck on the next round of tests.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Suspected MGUS
Thanks Nancy and Multibilly, it is nice to have this place to turn to when I feel overwhelmed by all this new information and tests. I will let you know what happens with the new data.
I am taking vitamin D (1000 IU), curcumin (500 mg) and multivitamins daily (also contains vitamin D). We'll see if those have had any effect on the results of the electrophoresis. I suspect no, but who knows anyway.
I am taking vitamin D (1000 IU), curcumin (500 mg) and multivitamins daily (also contains vitamin D). We'll see if those have had any effect on the results of the electrophoresis. I suspect no, but who knows anyway.
Re: Suspected MGUS
Hi There. I am not a medical professional, but I share the same worries as you. I was also diagnosed with MGUS at an age younger than the norm. I stressed and panicked and still do. I eventually learned that people with MGUS often have it for many years before they are officially diagnosed. Perhaps you may be person who found out you have MGUS many years earlier than the norm.
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: Suspected MGUS
Hi guys,
I had my neuro appointment today and got to see some of my bloodwork from last week.
Everything returned labeled "normal". My albumin is back below the upper bound (it is 46.6 now), total protein is 79 (woo!), immunoglobulin is down as well (15.8).
The levels for IgG, IgA, IgM and IgE / IgD all came back normal as well.
The electrophoresis had a note that a "monoclonal spike was previously identified", which I already knew (?), so I am not sure if they just didn't retest or what. There were some other tests, but my neuro didn't go through them (but nothing was in red on the list).
Anyway, I will hopefully be seeing my doctor on Saturday (he just called today) to discuss these. My neuro thinks a referral to a hematologist is worth pursuing, but he said not to worry and just live life normally. He's a fun guy
He said to keep the immune system happy and everything will be ok. I hope so. I blame this whole thing (my eye problems, this spike) on the swine flu or God knows what flu I had. I think it threw my entire immune system out for a spin.
I pulled something in my hip today (I'm 25 for god's sake!), and I hope it has nothing to do with this MGUS thing. Probably just panic honestly.
Regardless, I hope everything is okay with you all. I will hopefully have lots of numbers to share on Saturday.
I had my neuro appointment today and got to see some of my bloodwork from last week.
Everything returned labeled "normal". My albumin is back below the upper bound (it is 46.6 now), total protein is 79 (woo!), immunoglobulin is down as well (15.8).
The levels for IgG, IgA, IgM and IgE / IgD all came back normal as well.
The electrophoresis had a note that a "monoclonal spike was previously identified", which I already knew (?), so I am not sure if they just didn't retest or what. There were some other tests, but my neuro didn't go through them (but nothing was in red on the list).
Anyway, I will hopefully be seeing my doctor on Saturday (he just called today) to discuss these. My neuro thinks a referral to a hematologist is worth pursuing, but he said not to worry and just live life normally. He's a fun guy
He said to keep the immune system happy and everything will be ok. I hope so. I blame this whole thing (my eye problems, this spike) on the swine flu or God knows what flu I had. I think it threw my entire immune system out for a spin.I pulled something in my hip today (I'm 25 for god's sake!), and I hope it has nothing to do with this MGUS thing. Probably just panic honestly.
Regardless, I hope everything is okay with you all. I will hopefully have lots of numbers to share on Saturday.
Re: Suspected MGUS
Catsunami,
That's encouraging news.
It would be good to look at your latest serum immunofixation test to see what it says. That test is very sensitive for detecting the presence of any monoclonal protein in your blood. It won't measure the amount of monoclonal protein in the blood, but it will tell you pretty reliably if any may be present.
Let us know what happens and best of luck to you.
That's encouraging news.
It would be good to look at your latest serum immunofixation test to see what it says. That test is very sensitive for detecting the presence of any monoclonal protein in your blood. It won't measure the amount of monoclonal protein in the blood, but it will tell you pretty reliably if any may be present.
Let us know what happens and best of luck to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Suspected MGUS
I saw my doctor yesterday, but I didn't really find out anything new.
They did the immunofixation originally (like a month ago), and I don't think they did it again. Regardless, officially my M-spike is 0.68 g/dL. As I said last time, everything is within normal ranges (IgA, IgG, IgM, albumin, etc, etc). My CBC is also normal.
My doctor (he's a GP) got confused about units because Canada and U.S. differ by a factor of 10, so he was really worried I had smoldering multiple myeloma. I convinced him to double check his research, and he seems to have calmed down a bit. That was a strange experience.
Anyway, he referred me to a hematologist, but he said it will probably take a while to be seen because I'm not really a patient in a rush.
On a normal life note, I signed up for a few running races this year Life is beginning to get back on track somewhat. It's comforting.
They did the immunofixation originally (like a month ago), and I don't think they did it again. Regardless, officially my M-spike is 0.68 g/dL. As I said last time, everything is within normal ranges (IgA, IgG, IgM, albumin, etc, etc). My CBC is also normal.
My doctor (he's a GP) got confused about units because Canada and U.S. differ by a factor of 10, so he was really worried I had smoldering multiple myeloma. I convinced him to double check his research, and he seems to have calmed down a bit. That was a strange experience.
Anyway, he referred me to a hematologist, but he said it will probably take a while to be seen because I'm not really a patient in a rush.
On a normal life note, I signed up for a few running races this year
Life is beginning to get back on track somewhat. It's comforting.Re: Suspected MGUS
Hi guys,
No new developments here really, but I finally got my appointment with the hematologist set up (May 10th).
He also wants me to do a full skeletal survey (which I really don't wanna do because it's x-rays and I feel like I've had enough of those this year). I am not sure why they're so fixated on thinking I have SMM, I don't think I have any symptoms of it, my M-spike is quite low.
He also requested the following blood tests, and I marked some that I am confused about (mainly why?):
CBC
Creatine
Electrolytes
ALT (liver? why?)
Albumin
Alkaline Phosphatase (more liver)
Bilirubin - total & direct (more liver...)
Calcium
GGT (bile ducts + liver)
Glucose - Fasting (diabetes?)
Protein Electrophoresis
AST (liver again?)
CRP (inflammation marker, produced by the liver)
B2 Microglobulins (multiple myeloma marker)
Serum free light chains
Immunoglobulins (IgG, IgA and IgM)
And he wants me to do the 24 hour urine collection AGAIN. I HATE doing that test, it is so gross.
Anyway, I am worried that he is doing so many tests that are for quite serious diseases, and in particular full blown multiple myeloma. I guess they're really suspecting multiple myeloma?
No new developments here really, but I finally got my appointment with the hematologist set up (May 10th).
He also wants me to do a full skeletal survey (which I really don't wanna do because it's x-rays and I feel like I've had enough of those this year). I am not sure why they're so fixated on thinking I have SMM, I don't think I have any symptoms of it, my M-spike is quite low.
He also requested the following blood tests, and I marked some that I am confused about (mainly why?):
CBC
Creatine
Electrolytes
ALT (liver? why?)
Albumin
Alkaline Phosphatase (more liver)
Bilirubin - total & direct (more liver...)
Calcium
GGT (bile ducts + liver)
Glucose - Fasting (diabetes?)
Protein Electrophoresis
AST (liver again?)
CRP (inflammation marker, produced by the liver)
B2 Microglobulins (multiple myeloma marker)
Serum free light chains
Immunoglobulins (IgG, IgA and IgM)
And he wants me to do the 24 hour urine collection AGAIN. I HATE doing that test, it is so gross.
Anyway, I am worried that he is doing so many tests that are for quite serious diseases, and in particular full blown multiple myeloma. I guess they're really suspecting multiple myeloma?
Re: Suspected MGUS
Hi Catsunami,
Nearly all of the lab tests you are questioning (the liver function tests) come as part of a comprehensive metabolic panel. So, you will get these whether you need them or not when you get a comprehensive metabolic panel. Running a comprehensive metabolic panel and a CBC are useful and part of any ongoing monitoring tests of MGUS or smoldering myeloma patients.
I'm not a doc, but I agree with you that the value of a 24-hour UPEP is questionable in your situation, especially if you recently had one done. As a smoldering multiple myeloma patient, I don't have them done now that I've been diagnosed and I am not undergoing treatment. My onc also simply sees no value in them given he knows what my serum free light chains are doing, I'm not undergoing treatment and there is no suspicion of anything such as amyloidosis, etc. Besides in my pretty unique situation, my free light chains simply do not make it into my kidneys anyway, so there isn't much of anything interesting to measure in my pee
So, I might push back if I were you...or at least ask your doc why he is ordering this test at this particular time.
Regarding imaging for initial diagnostic purposes, the new IMWG-recommended imaging method is an MRI (no radiation) or PET/CT, not a skeletal survey. See:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, October 26, 2014
But I have no idea what the policy is for imaging in Canada and if you have access to whole-body MRI or low-dose CT. But if you've never had a full-body set of images done, it's probably a good idea to get at least one set done as part of your initial diagnostic ordeal. I might also recommend a DEXA scan just so you have it as a baseline.
Nearly all of the lab tests you are questioning (the liver function tests) come as part of a comprehensive metabolic panel. So, you will get these whether you need them or not when you get a comprehensive metabolic panel. Running a comprehensive metabolic panel and a CBC are useful and part of any ongoing monitoring tests of MGUS or smoldering myeloma patients.
I'm not a doc, but I agree with you that the value of a 24-hour UPEP is questionable in your situation, especially if you recently had one done. As a smoldering multiple myeloma patient, I don't have them done now that I've been diagnosed and I am not undergoing treatment. My onc also simply sees no value in them given he knows what my serum free light chains are doing, I'm not undergoing treatment and there is no suspicion of anything such as amyloidosis, etc. Besides in my pretty unique situation, my free light chains simply do not make it into my kidneys anyway, so there isn't much of anything interesting to measure in my pee
So, I might push back if I were you...or at least ask your doc why he is ordering this test at this particular time. Regarding imaging for initial diagnostic purposes, the new IMWG-recommended imaging method is an MRI (no radiation) or PET/CT, not a skeletal survey. See:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, October 26, 2014
But I have no idea what the policy is for imaging in Canada and if you have access to whole-body MRI or low-dose CT. But if you've never had a full-body set of images done, it's probably a good idea to get at least one set done as part of your initial diagnostic ordeal. I might also recommend a DEXA scan just so you have it as a baseline.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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