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

@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

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.

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.

Sorry, typo. The mutation is t(11;14)(q13;q32). I left out a "q". 😃

It's a mutation that occurs 15-20% of the time and doesn't confer additional risk for MM, but occurs around 50% of the time with AL. I'm not sure about risk there yet.

I'm a retired computer systems analyst and have often had to acquire some expertise in various systems in order to do my job, including hospital systems. But it would be nice in this case to know exactly why the consulting hem/onc thought my neuropathy isn't related to my LC-MGUS when everything I've read seems to indicate that it IS related.

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.

in reply to @leslie2121 Yes, I have an online portal where I communicate with my doctors. However, my hematologist has a "nurse navigator" who I call Nurse Ratchet, because she filters all of my messages to the doctor, and I never know if he sees my messages or not. During a recent visit with my OB/GYN, during which she thought that perhaps the fact that I am feeling hot all the time was not hormonal, but perhaps some kind of malignancy, I sent a message to the damn doctor, Nurse responded, "hmm....interesting. I will order more labs."

@lizzyr1114 hello!
I think blood disorders in general are pretty much out of the purvey of the typical PCP. From my own experience, my PCP made a referral right away to a hematologist/oncologist. She said that she was doing this because it is beyond her expertise. I appreciate that a generalist has to be knowledgeable about many things, but this blood disorder stuff is pretty specialized.
A specialist will probably agree with your PCP that it’s nothing to worry about, but you will then have information from someone who treats patients with MGUS, smoldering Multiple Myeloma and multiple Myeloma every day.
From my limited lay person understanding of free light chain elevations, they might look for a plasma disorder which might not necessarily mean MGUS. So I would definitely want to explore that further.
Try to avoid self-diagnosing because Dr Google will scare you with its glass-half-empty approach. Get your information from a specialist.
If you do have MGUS and that pesky M protein is in your blood, they will take good care of you. Regular bloodwork to watch for any progression, they will get to the source of that back pain and you will receive a solid diagnostic workup. I feel quite confident that I receive excellent medical care.
Try to stay calm and carry on but find a good doc. Ask lots of questions. Write them down and insist that you get them answered. Advocate for yourself.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
Let us know what you find out. Wishing you the best possible outcome.
Patty

Good morning
I am new to this but share much frustration. I have recently got blood work that show my free kappa light chain and lambnda cam back elevated but my ratio is normal. The only reason I had my PCP do this is for 2 reasons, I have been having back pain and my mother had multiple myeloma. My PCP did not seem to think if was anything. I am concerned because of my mother. I am not sure where to go from here.

Liz

I understand your frustration! I have had several different experiences from doctors- some are better than others at explaining our labs. It’s a lot of detail - I just want a concise & understandable summary of what’s going on.
Agree you should avoid dr google because everything sounds dire online. I’m so sorry you are having to wait for clarity! 🥹

Anyway- here’s my 2 cents:
1. Do you have a portal where you can ask questions directly to your doctor?
2. Not to be insulting but have you asked specifically for a consultation with your doctor to review results and ask questions? Telemedicine is great for this.
3.I’m a retired RN, but nurse navigators are way over their heads on stuff like this- and you deserve the doctor’s expertise & time.
4. There are educational tutorials on lab results via HealthTree .org you might get a better grasp of lab results and meaning of abnormalities.
5. Can you find a more responsive team in your area?
I imagine the holidays are part of the reason you haven’t heard back.

I just received some very alarming lab results, as was expected. I have given HealthTree, a non profit for multiple myeloma diseases, access to all of my medical records, and plan to call them after the first of the year. This organization has a very good reputation, and I am confident that someone will take the time to walk me through my labs. Every time I ask my hematologist a question, his "nurse navigator" responds with some kind of worthless answer/non answer. It has become so frustrating trying to get a straight answer from any of my clinicians, and I am sure I am not the only one. I refuse to go online and try to diagnose myself, even though I am very well versed in terms of medical terminology, lab results etc. But these free light chain labs are just too confusing for a layperson like me.