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

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.

@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

@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

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.

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.

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.

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.