1. < Blood Cancers & Disorders

MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio

Posted by jart @jart, May 15, 2022

The above was found in his blood serum test but follow-up 24 hr urine test showed only 2 free Kappas. Has anyone had experience with this? Does the urine test supersede the serum testing? Either way, is there anything to do other than “watchful waiting?”

BTW, he also has Dysautonomia (Diabetic T2).

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frances007 | @frances007 | Jan 1 2:01am
In reply to @leslie2121 "She is “gate-keeping” probably at the doctor’s instruction- but sounds inappropriate and beyond her scope of..." + (show)
@leslie2121

She is “gate-keeping” probably at the doctor’s instruction- but sounds inappropriate and beyond her scope of practice!
Dang!
Can you ask for a consultation appointment with your doctor?
That you really want to speak/hear directly from him/her.
The doc maybe lazy, but not okay to avoid serious questions from a patient. The doctor is ultimately responsible here.
I’m sorry.

Jump to this post

in reply to @leslie2121 At this point I am working on developing a better understanding of my labs, and HealthTree has some wonderful education videos that are done by real doctors talking about real things. Easy to understand information about light chains, lambda/kappa ratios etc. I figure if I go to my next appointment and have a better grasp of just what these tests are telling him, I may be able to have an intelligent discussion, as opposed to being the uniformed patient, sadly. I ended up submitting a form to Sutter, one of those "could use improvement" things and mentioned Nurse Ratchet, saying that while she is indeed very intelligent, I never know which of my messages gets forwarded to my doctor, or not. I intend to discuss this with him when I see him in a week or so. We all agree that medicine has changed so much, as I never thought I would be spending so much time trying to relearn chemistry and biology again. Doing so in college was difficult enough. LOL,

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2012can | @2012can | Dec 29, 2023
In reply to @2012can "I am convinced neuropathy can be related to free light chains and antibodies(in my case igM)..." + (show)
@2012can

I am convinced neuropathy can be related to free light chains and antibodies(in my case igM) . In 2016 I was in horrible pain from neuropathy and went to a neurologist for help. After months of tests this doc sent me to oncologist who diagnosed MGUS and chronic leukemia. I was in wait/watch for 6 or so months and oncologist decided to try rituxan to treat the CLL. Later I found he suspicioned the rituxan would help alleviate neuropathy, and it did.
A year or so later acute leukemia(APL) kicked in and I was treated with arsenic for 8 months until remission . I still have quarterly visits for MGUS and CLLwith leukemia and lymphoma centers. When the free kappa and the igM start climbing, so does the neuropathy. I had another series of rituxan treatments about 15 months back . Free kappa and igMs were reduced and I have been neuropathy pain free since.
I sympathize with you not being to get definitive answers to your issues. Seems oncologists don't take MGUS serious until one approaches full blown MM. What I do know is a cancer patient, or their handlers, have to proactive to get results.
I enrolled in a clinical trial(Clinical Trials.gov I.D @ NCT02726750) conducted by MD Anderson attempting to determine the MGUS markers that may predict the progression of MGUS to MM. For me this is another layer of defense as I am getting additional tests and another set of docs following my MGUS.
Hang tough and best of luck.

Jump to this post

I forgot to mention , in my struggle with neuropathy prior to cancer diagnosis, I did many sessions of plasmapheresis, plasma exchange. The neurologist explained many of the bad actors are in the blood plasma. The treatment was of relief, though temporary.

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Mentor
Patty, Volunteer Mentor | @pmm | Dec 29, 2023

Thanks Ginger! Here’s hoping for a good New Year for all of us.
Patty

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 29, 2023

@nancyworld @pmm @2012can It really warms my heart, to read your posts, as you all share your health journeys! Between us, we are quite a fountain of information. I have no doubt this helps us and others as we navigate through our health journeys.

Thank you for bravely "stepping up to the plate"!
Ginger

REPLY
NancyWorld | @nancyworld | Dec 28, 2023
In reply to @2012can "I am convinced neuropathy can be related to free light chains and antibodies(in my case igM)..." + (show)
@2012can

I am convinced neuropathy can be related to free light chains and antibodies(in my case igM) . In 2016 I was in horrible pain from neuropathy and went to a neurologist for help. After months of tests this doc sent me to oncologist who diagnosed MGUS and chronic leukemia. I was in wait/watch for 6 or so months and oncologist decided to try rituxan to treat the CLL. Later I found he suspicioned the rituxan would help alleviate neuropathy, and it did.
A year or so later acute leukemia(APL) kicked in and I was treated with arsenic for 8 months until remission . I still have quarterly visits for MGUS and CLLwith leukemia and lymphoma centers. When the free kappa and the igM start climbing, so does the neuropathy. I had another series of rituxan treatments about 15 months back . Free kappa and igMs were reduced and I have been neuropathy pain free since.
I sympathize with you not being to get definitive answers to your issues. Seems oncologists don't take MGUS serious until one approaches full blown MM. What I do know is a cancer patient, or their handlers, have to proactive to get results.
I enrolled in a clinical trial(Clinical Trials.gov I.D @ NCT02726750) conducted by MD Anderson attempting to determine the MGUS markers that may predict the progression of MGUS to MM. For me this is another layer of defense as I am getting additional tests and another set of docs following my MGUS.
Hang tough and best of luck.

Jump to this post

Hi, @2012can - I'm so glad that you were able to get your neuropathy and other blood conditions under control!

I've been reading about various monoclonal gammopathies and, indeed, IgM is notorious for causing neuropathy.

Mine is a little different... it's JUST kappa light chains with no large (IgA, IgG, IgM) immunoglobulins. There's no M-spike. As far as MGUS potentially developing into MM goes, this is a lucky break. I'm on the low-risk side of things. But I'm not sure about potential development into AL amyloidosis, nor how risk factors for that development are identified. My genetic mutation and abnormal plasma cell level are somewhat in line with AL, if not bad for MM. And AL can also affect nerves. I'm not quite ready to do a sural nerve biopsy, however.

I've had a weird inflammatory situation for several months where I'm having repeated low fevers with sweating. The "fevers" aren't high enough to mean much clinically, I guess, but it just seems like my immune system is trying to fight something, maybe circulating or depositing kappa free light chains in the absence of amyloids. Just my hunch.

The idea of finding a clinical trial is really good. I'm glad you were able to find another strategy and set of docs for addressing your blood disorders. You are right that we have to actively pursue solutions. I'll keep looking for a trial that might fit my situation. Thanks!

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2012can | @2012can | Dec 28, 2023
In reply to @nancyworld "Hi, @pmm - what to do if the hematologists/oncologists at your clinic "don't treat MGUS"? I..." + (show)
@nancyworld

Hi, @pmm - what to do if the hematologists/oncologists at your clinic "don't treat MGUS"?

I was recently diagnosed with MGUS at Mayo Clinic. It seems to be kappa light-chain MGUS from comparing my test results to my extensive reading.

FLC ratio is 5.64, bone marrow was 5% abnormal kappa plasma cells, mutation from FISH testing was t(11;14)(q13;32).

I had pushed for further testing due to the LC ratio and so got fat pad and bone marrow biopsies done. The internal medicine doc handling this was commendably open to my concerns about progressing to AL amyloidosis, given my presenting symptom of somewhat rapidly-progressing length-dependent axonal peripheral neuropathy.

But I have not spoken with a hem/onc because "this is only MGUS". Rather, a hem/onc was called as a consult to my doctor, not to me. Fortunately he did agree to the bone marrow biopsy with FISH analysis and ordered it, so now I have a better picture of what's going on.

Because my abnormal plasma cells are only at 5% and my light chains are relatively low, though with an abnormal ratio, and no amyloids were found by biopsy, I've been advised to wait 6 months and test again. But what about the peripheral neuropathy? It started at the bottoms of my feet in July, approximately, and had progressed to the top of my knees by November.

For my own peace of mind, I found a local lab where I can get the FLC test run for under $200 self-pay, so I can check that before having to wait 6 more months to check whether there's progression.

Jump to this post

I am convinced neuropathy can be related to free light chains and antibodies(in my case igM) . In 2016 I was in horrible pain from neuropathy and went to a neurologist for help. After months of tests this doc sent me to oncologist who diagnosed MGUS and chronic leukemia. I was in wait/watch for 6 or so months and oncologist decided to try rituxan to treat the CLL. Later I found he suspicioned the rituxan would help alleviate neuropathy, and it did.
A year or so later acute leukemia(APL) kicked in and I was treated with arsenic for 8 months until remission . I still have quarterly visits for MGUS and CLLwith leukemia and lymphoma centers. When the free kappa and the igM start climbing, so does the neuropathy. I had another series of rituxan treatments about 15 months back . Free kappa and igMs were reduced and I have been neuropathy pain free since.
I sympathize with you not being to get definitive answers to your issues. Seems oncologists don't take MGUS serious until one approaches full blown MM. What I do know is a cancer patient, or their handlers, have to proactive to get results.
I enrolled in a clinical trial(Clinical Trials.gov I.D @ NCT02726750) conducted by MD Anderson attempting to determine the MGUS markers that may predict the progression of MGUS to MM. For me this is another layer of defense as I am getting additional tests and another set of docs following my MGUS.
Hang tough and best of luck.

REPLY
2 replies
NancyWorld | @nancyworld | Dec 28, 2023
In reply to @pmm "@nancyworld Even the specialists seem to be very specialized. I poked around until I found someone..." + (show)
@pmm

@nancyworld
Even the specialists seem to be very specialized. I poked around until I found someone who specializes in the treatment of multiple myeloma. I hope never to have multiple myeloma, but one should be prepared.
Mayo may work with someone in your area. Or maybe Mayo is in your area? At any rate, various members of this forum have been assessed or treated there and they have some top notch people.
My anxiety goes amuck if I don’t have confidence in my provider. Don’t tell him, but he was not my first choice. I was unable to get into see my target doc in a timely manner and he was suggested as a substitute. It turned out to be a good fit. He is experienced, stays on top of the new data, is deliberate in his game plan but listens to my thoughts as well. He answers all my questions and doesn’t make me feel like I am wasting his time. He also isn’t quick to do more testing than is necessary to support a diagnosis. He gives me the options and the associated risk, pros and cons. I was a medical social worker for 15 years and have seen the gamut. So this is what I am looking for. If my numbers indicate progression, we have a game plan. I’m good with that.
You have educated yourself and had a diagnostic workup. Think about what kind of clinician you would work well with. Talk to people who know the players and find yourself an expert in the diagnosis and treatment of multiple myeloma. (Let me know if you find someone who can deal with the neuropathy. I will travel to go see them myself. That seems to be a mystery. )
Once you find a good one, try to relax and live your life. The anxiety and worry are not your friends. They will make you feel sick.
Best of luck. Let us know.
Patty

Jump to this post

@pmm, thank you for your kind response. Yes, I've been a Mayo patient for over 20 years. I did find a hematologist here who's very impressive, doing research into the factors that cause MGUS to progress, and who also seems patient-oriented. I'd love to see him at some point.

They just seem to have criteria for referring to a specialist that I'm not clear on, and that I seem not to be meeting. I should be able to find out more in January about what those criteria are. My mother is in the hospital now with major heart problems so I'll be waiting to do more with my own problems.

I'm definitely not craving chemo or stem cell transplant. I applaud the folks who are dealing with it. But I also don't want this neuropathy to progress irretrievably, or watch while whatever's causing it (amyloids not picked up on biopsy? inflammatory reaction to circulating free light chains?) affects other organs. Fortunately, my heart and kidneys seem good right now.

I'll probably get by with doing my own FLC testing for now, and hope to be able to see a good specialist as needed.

EDIT: typo.

REPLY
Mentor
Patty, Volunteer Mentor | @pmm | Dec 28, 2023
In reply to @pmm "@nancyworld Even the specialists seem to be very specialized. I poked around until I found someone..." + (show)
@pmm

@nancyworld
Even the specialists seem to be very specialized. I poked around until I found someone who specializes in the treatment of multiple myeloma. I hope never to have multiple myeloma, but one should be prepared.
Mayo may work with someone in your area. Or maybe Mayo is in your area? At any rate, various members of this forum have been assessed or treated there and they have some top notch people.
My anxiety goes amuck if I don’t have confidence in my provider. Don’t tell him, but he was not my first choice. I was unable to get into see my target doc in a timely manner and he was suggested as a substitute. It turned out to be a good fit. He is experienced, stays on top of the new data, is deliberate in his game plan but listens to my thoughts as well. He answers all my questions and doesn’t make me feel like I am wasting his time. He also isn’t quick to do more testing than is necessary to support a diagnosis. He gives me the options and the associated risk, pros and cons. I was a medical social worker for 15 years and have seen the gamut. So this is what I am looking for. If my numbers indicate progression, we have a game plan. I’m good with that.
You have educated yourself and had a diagnostic workup. Think about what kind of clinician you would work well with. Talk to people who know the players and find yourself an expert in the diagnosis and treatment of multiple myeloma. (Let me know if you find someone who can deal with the neuropathy. I will travel to go see them myself. That seems to be a mystery. )
Once you find a good one, try to relax and live your life. The anxiety and worry are not your friends. They will make you feel sick.
Best of luck. Let us know.
Patty

Jump to this post

And it occurs to me that maybe what you are asking is if “watch and wait“ is a good option. For me, it is. I am seen every 6 months and absolutely don’t want to start treatment until there is efficacy because the condition is ripe for a good response. You have to remember that “treatment” is not only not pleasant, but often doesn’t discriminate well between what is good and what is not in our bodies. It can be harsh even though curative. My plan is to eat well and care for my body as much as possible, hoping that I never need treatment.

REPLY
Mentor
Patty, Volunteer Mentor | @pmm | Dec 28, 2023
In reply to @nancyworld "Hi, @pmm - what to do if the hematologists/oncologists at your clinic "don't treat MGUS"? I..." + (show)
@nancyworld

Hi, @pmm - what to do if the hematologists/oncologists at your clinic "don't treat MGUS"?

I was recently diagnosed with MGUS at Mayo Clinic. It seems to be kappa light-chain MGUS from comparing my test results to my extensive reading.

FLC ratio is 5.64, bone marrow was 5% abnormal kappa plasma cells, mutation from FISH testing was t(11;14)(q13;32).

I had pushed for further testing due to the LC ratio and so got fat pad and bone marrow biopsies done. The internal medicine doc handling this was commendably open to my concerns about progressing to AL amyloidosis, given my presenting symptom of somewhat rapidly-progressing length-dependent axonal peripheral neuropathy.

But I have not spoken with a hem/onc because "this is only MGUS". Rather, a hem/onc was called as a consult to my doctor, not to me. Fortunately he did agree to the bone marrow biopsy with FISH analysis and ordered it, so now I have a better picture of what's going on.

Because my abnormal plasma cells are only at 5% and my light chains are relatively low, though with an abnormal ratio, and no amyloids were found by biopsy, I've been advised to wait 6 months and test again. But what about the peripheral neuropathy? It started at the bottoms of my feet in July, approximately, and had progressed to the top of my knees by November.

For my own peace of mind, I found a local lab where I can get the FLC test run for under $200 self-pay, so I can check that before having to wait 6 more months to check whether there's progression.

Jump to this post

@nancyworld
Even the specialists seem to be very specialized. I poked around until I found someone who specializes in the treatment of multiple myeloma. I hope never to have multiple myeloma, but one should be prepared.
Mayo may work with someone in your area. Or maybe Mayo is in your area? At any rate, various members of this forum have been assessed or treated there and they have some top notch people.
My anxiety goes amuck if I don’t have confidence in my provider. Don’t tell him, but he was not my first choice. I was unable to get into see my target doc in a timely manner and he was suggested as a substitute. It turned out to be a good fit. He is experienced, stays on top of the new data, is deliberate in his game plan but listens to my thoughts as well. He answers all my questions and doesn’t make me feel like I am wasting his time. He also isn’t quick to do more testing than is necessary to support a diagnosis. He gives me the options and the associated risk, pros and cons. I was a medical social worker for 15 years and have seen the gamut. So this is what I am looking for. If my numbers indicate progression, we have a game plan. I’m good with that.
You have educated yourself and had a diagnostic workup. Think about what kind of clinician you would work well with. Talk to people who know the players and find yourself an expert in the diagnosis and treatment of multiple myeloma. (Let me know if you find someone who can deal with the neuropathy. I will travel to go see them myself. That seems to be a mystery. )
Once you find a good one, try to relax and live your life. The anxiety and worry are not your friends. They will make you feel sick.
Best of luck. Let us know.
Patty

REPLY
2 replies
frances007 | @frances007 | Dec 28, 2023

in reply to @leslie2121 I have an appointment on 1/8/2023. I have also asked for someone to be present since I am a bit hearing impaired, and his French/Lebanese accent is impossible to understand. Yes, the nurse is probably filtering messages at his direction, however I can tell that those I think are "important" never make it to the doctor, thus my frustration. I have even lowered my standards by thanking her for being so great in the way she gets labs ordered and things of that nature, thinking "you catch more bees with honey." However, I am truly frustrated, which why I will be talking to the nonprofit, HealthTree, who has already contacted me to set up an appointment to speak to a doctor who is willing to take the time to "spell it out for me." I actually feel better now, just knowing there are people/organizations who offer these kinds of services. I have been fortunate in this regard. The Immunodeficiency Foundation is another terrific non profit, and if not for them I would have had no clue under which section of Medicare my immunotherapy would fall under. I am clueless about such things.
Thanks for the great note.

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