Hello!
So glad to have this as a resource. It is good to be amongst company that understands. I have been living with an MGUS for the last 9 years (I am a 42 year old female). The kappa-lambda ratio has been stable. Upon moving here, I met with a hematologist to have my regular check in to see if any changes. Blood kappa-lambda ratio remains stable. But my random urine sample indicates a kappa-lambda ratio of 17.00 (normal high is 10.65 I believe). This is the result of my lambda band being a tenth of a point below the lowest normal (0.01 vs 0.02). Kappa band is low normal (0.17).
Any insights? I got very freaked out and spoke to the hematologist, who did not seem worried (at all), but has agreed to send me for a 24 hour urine check given that i have never demonstrated any abnormalities in urine.
Does this seem strange to anyone but me? As you all know, MGUS is such an anxiety producing condition. So much waiting and watching and so many conflicting doctor's opinions. Any thoughts would be appreciated since my doctors in NYC always said I should be grateful that nothing appeared in my urine before.
As an aside, I have low ferritin, am not anemic, and no kidney abnormalities. I have also never had a bone marrow biopsy.
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Re: Normal kappa-lambda ratio in blood, abnormal in urine
Hi JJNYC,
Did you already have your 24 HR urine test, and do you have the results yet? I wanted to respond to your query because no one else has yet & I know how it feels to be left wondering & worrying & waiting. I'm sure others in the Myeloma Beacon community with more experience/knowledge than I have will chime in soon to give their feedback on your situation/questions & offer some clarity/information/suggestions.
I was diagnosed, I think, in a back-to-front way - as in, my serum/blood in the earlier years was normal but my urine - and even my CSF - showed evidence of faint monoclonal banding, imbalances between the light chains (abnormal/elevated ratio), etc. Years later, the abnormalities associated with MGUS began showing up in all of my bodily fluids. For me, the invention of the serum free light chains test has been a kind of revelation, because it seems to show much greater specificity of the state of the free light chains - and with much greater ease, on my part! - than the 24 HR urine tests.
Have you had a serum Beta-2 Microglobulin test? That's another test that is relatively new to my line-up of annual monitoring. Some doctors feel it doesn't have a great deal of utility once someone is already diagnosed, but I intend to keep an eye on my Beta-2 Microglobulin level. I'm one of those people who believes all information is good information, and the more information the better.
I understand your anxiety, and I'm sorry feeling stressed. I think you're doing the right thing in advocating for more tests & gaining as much information as possible to monitor your MGUS status. I had an oncologist a few years ago that was, well, the opposite of what you'd call "pro-active," I guess - and she told me I could go to every other year in terms of the full gamut of testing because I had been so stable for so long. Somehow, and I know I bear responsibility in agreeing to her advice, I ended up having only limited random urine tests, CBCs & Complex Metabolic Panels & Serum Immunofixation & Electrophoresis the last 3 years.That was a mistake, because when I finally did do ALL of the now-standard tests for monitoring MGUS, a lot had changed. It's important to partner with a doctor you feel is "on the same page" in terms of how closely & how often your condition should be monitored & the kinds of tests that should be done. No one, not even your doctor, is more invested in your health than you are. That's why we have to be vigilant about choosing wisely in our healthcare partnerships & leading the charge of advocating for whatever it takes to be our healthiest selves.
Let us know how your latest tests turned out and how you're feeling about the results. I'll be thinking about you & hoping for the best.
Did you already have your 24 HR urine test, and do you have the results yet? I wanted to respond to your query because no one else has yet & I know how it feels to be left wondering & worrying & waiting. I'm sure others in the Myeloma Beacon community with more experience/knowledge than I have will chime in soon to give their feedback on your situation/questions & offer some clarity/information/suggestions.
I was diagnosed, I think, in a back-to-front way - as in, my serum/blood in the earlier years was normal but my urine - and even my CSF - showed evidence of faint monoclonal banding, imbalances between the light chains (abnormal/elevated ratio), etc. Years later, the abnormalities associated with MGUS began showing up in all of my bodily fluids. For me, the invention of the serum free light chains test has been a kind of revelation, because it seems to show much greater specificity of the state of the free light chains - and with much greater ease, on my part! - than the 24 HR urine tests.
Have you had a serum Beta-2 Microglobulin test? That's another test that is relatively new to my line-up of annual monitoring. Some doctors feel it doesn't have a great deal of utility once someone is already diagnosed, but I intend to keep an eye on my Beta-2 Microglobulin level. I'm one of those people who believes all information is good information, and the more information the better.
I understand your anxiety, and I'm sorry feeling stressed. I think you're doing the right thing in advocating for more tests & gaining as much information as possible to monitor your MGUS status. I had an oncologist a few years ago that was, well, the opposite of what you'd call "pro-active," I guess - and she told me I could go to every other year in terms of the full gamut of testing because I had been so stable for so long. Somehow, and I know I bear responsibility in agreeing to her advice, I ended up having only limited random urine tests, CBCs & Complex Metabolic Panels & Serum Immunofixation & Electrophoresis the last 3 years.That was a mistake, because when I finally did do ALL of the now-standard tests for monitoring MGUS, a lot had changed. It's important to partner with a doctor you feel is "on the same page" in terms of how closely & how often your condition should be monitored & the kinds of tests that should be done. No one, not even your doctor, is more invested in your health than you are. That's why we have to be vigilant about choosing wisely in our healthcare partnerships & leading the charge of advocating for whatever it takes to be our healthiest selves.
Let us know how your latest tests turned out and how you're feeling about the results. I'll be thinking about you & hoping for the best.
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Moonspeak - Name: Moonspeak
- When were you/they diagnosed?: 2002
- Age at diagnosis: 38
Re: Normal kappa-lambda ratio in blood, abnormal in urine
Dear Moonspeak,
Thank you so much for your kind and thoughtful reply. I just dropped off my 24-hour urine sample and am awaiting results with crossed fingers. I did have a Beta Serum done as part of SPEP and it came back normal. Not sure if that is the test to which you are referring.
How are you doing at this point? Has your condition progressed or have you remained stable with "just" MGUS?
I agree that it is so important to be proactive, and I think I will likely have to find someone who will give me a second opinion about monitoring. It's difficult because, unlike New York City, where I was previously living, it appears there are far fewer options for follow-up in Portland, Oregon.
Thank you again for your generosity of spirit and responding to my query. For some reason, despite having lived with this for so many years at this point, I find that my anxiety is much higher about it. Possibly due to the fact that my symptoms appear to be different (I am much more fatigued and in the past year or so developed low ferritin levels without anemia, which may or may not be related to this).
I wish you all the best with your healing journey and am grateful to know there are others out there who understand the complexity of this.
Thank you so much for your kind and thoughtful reply. I just dropped off my 24-hour urine sample and am awaiting results with crossed fingers. I did have a Beta Serum done as part of SPEP and it came back normal. Not sure if that is the test to which you are referring.
How are you doing at this point? Has your condition progressed or have you remained stable with "just" MGUS?
I agree that it is so important to be proactive, and I think I will likely have to find someone who will give me a second opinion about monitoring. It's difficult because, unlike New York City, where I was previously living, it appears there are far fewer options for follow-up in Portland, Oregon.
Thank you again for your generosity of spirit and responding to my query. For some reason, despite having lived with this for so many years at this point, I find that my anxiety is much higher about it. Possibly due to the fact that my symptoms appear to be different (I am much more fatigued and in the past year or so developed low ferritin levels without anemia, which may or may not be related to this).
I wish you all the best with your healing journey and am grateful to know there are others out there who understand the complexity of this.
Re: Normal kappa-lambda ratio in blood, abnormal in urine
With a normal serum free kappa/lambda ratio, the urine ratio is meaningless (and should not be checked in my opinion). Urine free light chains are notoriously unreliable. You are doing the right thing by being proactive in your medical care. But my advice would be no further urine free light chain testing unless there is a change in the serum numbers.
Hope this is helpful!
Hope this is helpful!
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: Normal kappa-lambda ratio in blood, abnormal in urine
Hi JJNYC,
My advice is to find a large teaching hospital in your area. If you have to, travel to the closest program/hospital you're able to - it's (usually) just once a year. Your health is worth a road trip once a year!
My appointments and more tests are pending, but I will keep you updated. Find a hematologist/oncologist you trust & have a good rapport with. Nothing beats that. Check out any studies/trial in hospitals/medical centers near you; those are good places to find progressive thinking, testing, and folks willing to partner with you in advocating for the kinds of tests & level of monitoring that will allay any unnecessary anxiety on your part.
Please keep in touch; please let me know how it goes.
Denise
My advice is to find a large teaching hospital in your area. If you have to, travel to the closest program/hospital you're able to - it's (usually) just once a year. Your health is worth a road trip once a year!
My appointments and more tests are pending, but I will keep you updated. Find a hematologist/oncologist you trust & have a good rapport with. Nothing beats that. Check out any studies/trial in hospitals/medical centers near you; those are good places to find progressive thinking, testing, and folks willing to partner with you in advocating for the kinds of tests & level of monitoring that will allay any unnecessary anxiety on your part.
Please keep in touch; please let me know how it goes.
Denise
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Moonspeak - Name: Moonspeak
- When were you/they diagnosed?: 2002
- Age at diagnosis: 38
5 posts
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