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

Kappa light chain IgM- MGUS
Anyone else suffering from MGUS? Mine is slowly progressing and at present is precancerous cells. My B cells are mutated and crowding out healthy ones. My lymphocytes level is going lower and below normal, while my neutrophils level is above normal (not good). With having IgM means my MGUS is rare. What symptoms do others with IgM have? Mine are getting worse and more being added as it’s progressing. My platelet count is sinking and I’m bleeding more. My lymph glands are getting involved above and below midline (not good). My lymphatic drainage system in my legs are blocking up, causing my legs to be swollen. My bad guys are causing a toxin to be released that causes it to come up to the surface of the skin. This triggers itching so intense, I claw myself bloody because I can’t feel pain. Why can’t I feel it, simple, my bad guys ate the coating of Myelin off the nerves for lunch, killing them, (great huh!!!) The baddies are also killing the nerves in both arms and hands, (I just can’t win). There’s more symptoms but you get the gist of what’s happening to me. Anybody else doing this great?

Hi Becky,
I moved your message to this existing discussion about light-chain MGUS to this existing discussion.
- MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio https://connect.mayoclinic.org/discussion/mgus-and-quite-high-free-kappa-light-chain-and-kappa-lambda-ratio/

I did this so you can connect with fellow members like @jart @raye @confusedkoala and @oldkarl.

Becky, it sounds like your symptoms related to IgM are really challenging. I'm sorry to hear things are getting worse. Have you been given any solutions to deal with the itch?

@becky1024 I am a member of the same club, IgM light chain MGUS, that morphed into multiple myeloma.

For the itching, I use a rich vitamin E cream, and keep the area moisturized. For the lymphatic issue, try massage. Nerve issues in the hands and arms are being dealt with by using topical and systemic CBD.

Be gentle on yourself.
Ginger

Thanks for moving me Colleen, much appreciated. I live in a small coal mining community in Pennsylvania. With this forum, it’s like an oasis in the middle of a vast desert of knowledge but I just couldn’t find it. Now I have and instead of spending thousands and thousands of hours in my local library reading medical books trying to find out what’s wrong with me, with the internet, the door to knowledge finally opened to me.

With my precancerous cells mutating, growing and dying, it causes the toxin to be released. Once it reaches the surface of the skin, the trouble begins. Washing the skin does nothing, using an expensive lotion helps for a short period but as more toxin reaches the surface, the cycle begins all over again. Think of it this way, Colleen, imagine a human body decomposing, it releases body fluids over a long period of time, right? Same things happen with precancerous cells in that body. But there’s a catch, when we’re dead, we’re dead. When precancerous cells die, more are still being produced, over and over and over and over in a vicious cycle. Living, dying, making toxin that half drives me crazy with itching so intense, it just doesn’t stop. The only thing that helps, is when the baddies run out or food (that’s me naturally) and they slow up growing more cells. I guess the only thing that’ll stop the itching is if I’m dead or my precancerous cells finally progresses to a full blown cancer that they can actually treat, Great choices right? Start decomposing or be full of CANCER!!!!!!!!!

My husband has 27.18 mg/L for Lambda Qnt Free Light Chains, K:L Free Light Chain Ratio of 1.49 and Kappa Qnt Free Light Chains value 40.61 mg L and is receiving intravenous Gamunex-C infusion therapy for Chronic Inflammatory Demyelinating Polyneurophy (CIDP). Does anyone else have s similar experience?

Thank you for the suggestions but my bad guys are headed towards a very rare form of Waldenstrom Macroglobulemia. My older brother did die from
MM caused by Agent Orange in Vietnam. How bad are your blood tests? Mine just jumped 100% for the worst, I get the next one in November. Take care and I hope for the best for you Ginger.

@becky1024 I have been on low dose chemo since last August. The low dose is because I also have unrelated kidney failure.

I attached what Mayo Clinic has to say about Waldenstrom Macroglobulemia, but I'm guessing you have already read it! My doctor tested for that while diagnosing my multiple myeloma. It sounds like your family may have a genetic component involved, given your brother's history.

Ask your doctor if you can use benadryl or a similar antihistamine to help calm down the amount of itching. Does an oatmeal bath help to relieve the surface itching? Meditation? Distraction of some sort? I have had itching bouts, too, and even just putting a rubber band on my wrist and snapping it instead of itching has distracted me enough at times. Self-talk "okay I know this is part of my disease, but I won't let it get the best of me!"
https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/diagnosis-treatment/drc-20359986
Ginger

Believe it or not, Benadryl almost killed me with one pill. Like I say to all my doctors, I’m a freak of nature. Because of a genetic heart defect causing all kinds of problems, a 1 on a million defect, Each chamber of the heart has two pathways for the pulse electrical signal to pass thru, a main and a secondary. After 3 heart attacks in less than a year, the main pathways in the Right and Left Ventricles and the pathway between them and broken. That means the whole bottom of my heart is only working thru the secondaries. If any of one of those three break, I’ll drop dead immediately between the first half and the second half of the heartbeat. So I am forbidden to take any medications that will slow the heartbeat up, which is what Benadryl does. What that will do is slow the heart up so much, it’ll stop. Great huh! Nothing like being a freak of mature. I had a first cousin with the same problem. Then one day he was going into his house. He had one foot inside the house and the other on the porch and dropped dead. The autopsy said he was dead before he hit the floor, that’s what I have to look forward too.

I’ve been battling MGUS since May 2019 ever since I realized something was wrong with my bloodwork and asked my PCP to do specialized testing. That’s when my testing and troubles began. The wait and watch testing is standard for MGUS. The 24hr urine test is also an important tool in determining how things may be changing. The urine testing is done to check if you are passing the “M paraprotein”.

It looks for an M Spike, an indication that the paraprotein is progressing (not good) and you cells are headed towards a form of cancer, usually Multiple Myeloma or Lymphoma (mine indicates Lymphoma), my older brother’s was MM and died in 1999,. The number to be concerned about is 0.5 gd/L. Above that indicates your MGUS is progressing towards cancer of some kind. My last bloodwork shows my M/Spike was at 0.56 gd/L (not good). It means my bad guys are on the move and mutating. I pretty much figured that out because of all the new symptoms popping up all around my body.

Now for your Kappa, Lambda question. It’s one classification to tell what type of guys your body is making. IgD & IgE are very rare. In descending order in rarity IgG is the most common, IgA is next and then IgM, the rarest of the three and the one I have. In my last bloodwork, my IgM was listed 326 (definitely not good), which is way up past the high level scale.

Another classification is Kappa & Lambda free light chain and the ratio between them. My Kappa light chain is above normal at 48.49mg/dL. (definitely not good). My Lambda is at 19.10mg/dL, average level. My ratio is 2.56(again not good).

So as you can see, my bad guys are building up an army to do battle with my nonexistent immune system. The symptoms I described in another post are the results of my bad guys progressing into cancer, as it destroys my “B” cells, lymphocytes, platelets as it weakens me and devours my body for food and energy while robbing it from every part of my body. Good luck to you, you could be one of the lucky ones who’s MGUS never progresses into anything but scares the he!! out of you. It could start progressing but stop all of a sudden. Btw, I’m almost 79 and in very fragile condition because I was born with multiple rare health defects. Becky1024

@becky1024 Good for you for staying up-to-date with your blood values! I do the same, and actually keep a spreadsheet detailing the source of the blooddraw and dates, since they are taken both at my oncologist's center and a commercial lab. I keep the range values for each draw location in a separate item, as their processing machines are different.

Being aware of trends in labwork is important to establish where a patient is in a diagnosis, rather than one set of values. I have found this out as we muddle through both multiple myeloma treatment and end stage renal failure [not associated with the myeloma]. Where I am on a chemo cycle affects my labs from the kidney doctor.
Ginger