High Kappa Lamda ratio
My husband had the free light chain test because he saw a neurologist about his peripheral neuropathy (he has had it for years but has been getting worse) the results were kappa free light 11.31, Lamda free light 1.17 with a ratio of 9.67. He has been referred to an oncology hematologist but in the meantime we are freaking out (he had testicular cancer 18 years ago so always nervous about some other cancer) I know the ratio is high but the other numbers aren’t that crazy so I was hoping someone could share if they had similar numbers. I also wondered whether the fact he had an inflammatory cough the day he had the test would affect the numbers. Thanks!
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@joh
Welcome to The Mayo Clinic Connect forum. It does send you into a tailspin when you get lab results that indicate that there may be a problem. And add to that, you hit the Internet and there is lots there to scare you.
Normal kappa free light chain is 3.3 to 19.4
Lambda is 5.7 to 26.3
His ratio is high, true and that is what they will look into.
I had high lab values over three years ago. There are so many variables to consider, including coexisting conditions and overall health. Although it took me several weeks to get into a hematologist/oncologist, when I finally got there I was diagnosed with MGUS. I’m not suggesting this is his diagnosis, but this was my experience.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
Like your husband, I have peripheral neuropathy which I attribute to the MGUS but it’s complicated because I also have type two diabetes which is very well controlled and my A1c is under 7.
With MGUS, we do what is known as watchful waiting. The probability of progression for MGUS to smoldering or multiple myeloma or other blood cancers is very low. So my blood was at first drawn every three months and now I’ve “graduated” to six month intervals between appointments with my hematologist/oncologist. I get routine scans to check for any lesions on my bones, I get blood analysis and my physician monitors for any of the telltale signs that there might be progression. So far so good! I am 72 and hope never to have actual blood cancer. And if I can be trained to stay consistent with the statistics, that’s very likely.
The important part for you, I believe, is to try and keep your anxiety at bay. There are members of the forum who have had MGUS for decades without progression to blood cancer. So I hope that when your husband sees the hematologist/oncologist, that’s what you will hear from him or her…but better yet, a retest within normal range. But since I’m not a physician, I can only reassure you from my own experience. I really don’t worry or even think about my MGUS anymore. And they have made remarkable progress with treatment for blood disorders so I’m reassured that even if my MGUS does progress, it is certainly treatable.
So to make a short story long, it’s going to require a visit with your hematologist/oncologist to figure out what’s going on with your husband, but I can offer you some general advice having dealt with this system for a few years now. First and foremost is not to get bogged down in information that you read on the Internet or from people you talk to about what may or may not be happening. It will increase your anxiety and chances are that when you do get the information you’ll be reassured. Make sure that your referral to hematologist oncologist is to someone who treats blood disorders every day as part of his or her specialty. This is indeed very specialized medicine and requires someone with experience and solid training. Since you’ve been through a bout of cancer with your husband I know I’m preaching to the choir when I recommend that you go with him to his appointments. So often anxiety will keep you from remembering everything that’s talked about so I write down questions and I take notes during my appointments so that I remember what was said. It also helps keep me on track to ask all my questions while I’m there and not be frustrated, trying to get someone on the phone later.
Being worried about someone you love is so hard. I hope that the diagnostic process will go quickly and go well for you. Take good care of yourself. You are living this with him.
Will you please let me know what you find out?
Thank you SO much for replying, I was getting to MGUS worse case smoldering. He had other blood work for proteins return normal yesterday. He can’t get in with the hematologist until February but we are on a cancellation list. I will definitely be going with him.
Again thank you! Your response definitely went toward easing my anxiety and I truly appreciate it. I will keep you updated. Take care!
I'm 70 and have had MGUS and polyneuropathy for 8 years, still asymptomatic. My kappa level is 310 and kappa/lambda is 27. I'm still in the 1% risk of it progressing to multiple myeloma. The C word is scary, and even the possibility of it hits hard, but for most people it doesn't progress.
I, too, have an elevated Kappa/lambda ratio. My haematologist thought for sure that I have POEM syndrome and wanted me to start chemo. Being a veteran of a year of chemo back in 1994 (stage 3 colon cancer) I was reticent. I have the peripheral neuropathy, organomegaly, M cells and the rest. VEGF was elevated but no where near what I saw being reported on POEM support groups. I asked for a second opinion which my doctor highly recommended. She wanted me to either go to a specific physician at Mayo or at the Melanoma Center at the University of Arkansas. I can't remember the last name of the doctor at Mayo, but her first name was Virginia. The physician at UAMSC , Dr Fritz van Rhees ran me through their clinic for a week. Parenthetically, I was unable to get an appointment at Mayo, my first choice, because of my insurance. Nonetheless I was extremely satisfied with the work up done in Little Rock.
At the end of the work up, Dr van Rhees said he didn't know for sure what I had, but it wasn't POEMs. So I, like others in this group, am burdened with the diagnosis of MGUS and idiopathic peripheral neuropathy. I too suspect some sort of connection with the CoVid immunisation and am very interested in watching posts here.
I got my MGUS diagnosis in 2010, as I remember, now 86. I have some fatigue, but otherwise not symptomatic. I believe both my husband and I got COVID from our son in January of 2021, after he flew down from New York City to spend five days with us and on the last day was incredibly ill - and of course flew home ill, though wearing a mask and was told he had the flu, though his symptoms were more Covid. When I got tested for antibodies, I was way off the charts positive, which no one could explain to me. I got timely vaccines and think I have not had it again, though a couple of times since I've been very very ill for just a few days, like three, so ill that I could not figure out how the home tests worked and no one was around to help. My most recent vaccine, two weeks ago, was the Novavax, not the spike vaccines. So far so good. I seem to have escaped the immunity issue with MGUS. I have used the Enovid anti-viral nasal spray (I order it from Israel) every time I leave the house or have company, mainly because I can't stand to just do nothing to change the odds. My husband sometimes does as well. No flu, no colds and probably no further Covid.
Can you tell me more about
“…the immunity issue with MGUS” ?
Thanks
I was said to have MGUS about 10 years ago. I am now 79. I have consistently high Kappa lambda numbers (about 19 times normal) and the oncologist says that when the numbers are reasonably stable over such a lengthy period, they rarely turn into anything! The important point though, is that I have also had peripheral neuropathy for a similar period. This preceded my COVID-19 by decades and of course, also preceded COVID-19 mRNA vaccinations (of which I have had at least three variations), by some years.
Hope that helps some.