[BB76060]

MGUS, but now with very high kappa FLC level

by BB76060 on Sat Jul 23, 2016 3:26 pm

I just joined this forum. I have had MGUS for a couple of years and my most recent lab shows my kappa free light chain level at 2368.0 (normal 3.3 - 19.4). Reading here in the forum, that value is far and away the highest I see.

Doctor tells me he has never seen a number that high that was not multiple myeloma and scheduled a PET scan and bone marrow biopsy, of which I will receive the results on Monday. Have not received the "official" diagnosis yet, but the doctor tells me he is very certain.

Back hurts and I have no energy and shortness of breath on exertion.

Anybody been here? What can I expect. Depression is not a problem, as I have myasthenia gravis, psoriatic arthritis, and most recently endocarditis.

[TerryH]

Re: MGUS, but now with very high kappa FLC level

by TerryH on Sat Jul 23, 2016 4:24 pm

Welcome to the forum, BB.

That certainly is a very high kappa level. However, what was your lambda free light chain level and your kappa/lambda ratio?

It's really the kappa/lambda ratio that is key to determining whether elevated free light chain levels are due to a monoclonal (myeloma-related) disease process, or to a polyclonal process, such as might be due to infection or autoimmune reactions.

Also, have you had any other lab tests done recently -- for example, tests that give your M-spike, hemoglobin, creatinine, or calcium levels? Those also could tell you a lot about where your disease is right now.

Last edited by TerryH on Sat Jul 23, 2016 4:32 pm, edited 1 time in total.

[Multibilly]

Re: MGUS, but now with very high kappa FLC level

by Multibilly on Sat Jul 23, 2016 4:32 pm

BB,

First off, what were your kappa, lambda and the ratio on your previous test and when was that test conducted? As Terry mentioned, knowing your lambda and serum free light chain ratio will also be key to know on your most recent test. Also, as Terry mentioned, knowing your serum M-spike values from your last couple of tests would also likely provide some valuable clues as to whether this is a monoclonal spike in your kappa number.

If this 2368 g/dL mg/L kappa number just came out of the blue and is completely out of line with your earlier tests, I'd be inclined to say that it was a lab error and to get re-tested before panicking and ordering a PET/CT and bone marrow biopsy. Folks on this forum (including me) often get bogus lab results and get re-tested before jumping to any conclusions when they see huge variations in their lab numbers. And, as Terry mentioned, this high kappa number could also be due to a polyclonal surge that is the result of an infection or something else.

[TerryH]

Re: MGUS, but now with very high kappa FLC level

by TerryH on Sat Jul 23, 2016 5:09 pm

Multibilly makes a really good point about the possibility of an error when it comes to your latest free light chain results. Such errors definitely can occur; they are not as rare as you might think.

[BB76060]

Re: MGUS, but now with very high kappa FLC level

by BB76060 on Sat Jul 23, 2016 11:27 pm

Just learning about this stuff. Here are the results of some other factors:

Kappa Free Light Chain, Serum - 2368.0
Lambda Free Light Chain, Serum - 5.9
Kappa/Lambda Free Light Chain Ratio, Serum - 401.36

M-Spike - 1.7

HGB - 8.4
WBC - 8.5
HCT - 30

As far as I know, the kappa light chain did come out of the blue, but I have been on a 7 week IV course of vancomycin for the endocarditis recently and SED rate of 130%+. Have had immune problems for years with the myasthenia grave and psoriatic arthritis.

[Multibilly]

Re: MGUS, but now with very high kappa FLC level

by Multibilly on Sun Jul 24, 2016 7:34 am

There's no arguing that those are high free light chain numbers. But you are also quite anemic.

How are your calcium, creatinine and eGFR doing (please include units of measure and reference ranges)? I ask about your creatinine and eGFR because they measure kidney function and excess free light chains can muck with your kidneys.

I am not at all qualified to say if any of your comorbidities may be contributing to these lab values, but I believe endocarditis can also cause anemia and increase one's free light chain numbers. But given your high free light chain numbers AND anemia, a bone marrow biopsy and PET/CT now makes more sense to me. Those tests would allow the doctor to evaluate the degree of the multiple myeloma disease burden and help figure out if multiple myeloma or your other conditions and drugs are contributing to your free light chain and blood count numbers. Also, if you've never had a bone marrow biopsy or PET/CT performed in the past, they will provide a good baseline set of data for future reference.

[BB76060]

Re: MGUS, but now with very high kappa FLC level

by BB76060 on Sun Jul 24, 2016 1:17 pm

Thanks so much for your replies. Creatinine level was 1.37. I do not have the most recent calcium nor eGFR at this time. I have lab on Monday as well as the bone marrow biopsy (which I have had 2 years ago).

I also have an appointment with the physician on Monday as well. I feel he wants to go over the results of the PET scan. I would appreciate any suggestions for me to ask the doctor since all of this is new ground for me.

[Multibilly]

Re: MGUS, but now with very high kappa FLC level

by Multibilly on Sun Jul 24, 2016 3:17 pm

I'd suggest asking for a copy of the radiologist's report and a CD of the PET/CT images and then have the doctor explain the findings sentence-by-sentence during your appointment, including what he thinks the diagnostic and prognostic implications are relative to when your were first diagnosed.

I might also suggest recording the meeting on your phone or other device, or taking very thorough notes. I say this because it's often very hard hard to decipher the implications of a PET/CT report on your own. It's also easy to forget much of what the doctor said during an appointment, especially if he hits you with a surprise or two.

[BB76060]

Re: MGUS, but now with very high kappa FLC level

by BB76060 on Mon Jul 25, 2016 2:58 pm

Just returned from doctor's visit. He said the PET scan did not show anything in the bones, but there was a spot in my chest (lymph node) with a significant glow. He postponed the bone marrow biopsy and is admitting me to the hospital for it to be biopsied as well as an MRI.

He still suspects myeloma even with these results, but wants to find out as much as he can so that he can de­ter­mine a course of treatment.

[barbaramh]

Re: MGUS, but now with very high kappa FLC level

by barbaramh on Tue Jul 26, 2016 6:52 pm

I was first diagnosed with multiple myeloma in January 2015. A few months later, I had my bone marrow biopsy. My lambda light chains were, in the words of my oncologist, "crazy high" at 22,000. At the time, I had no idea at all of what that meant.

We started treatment a month later and I was on Velcade and Decadron (dexamethasone) three weeks in a row and then 1 week off. That worked well for about a year, bringing my numbers down to around 10,000, which is still high. Recently we added Revlimid at 10 mg after my one month on 25 mg gave me almost every side effect possible. So far the Revlimid is working to bring down my lambda light chain level to about 5,000. I still have a way to go, but the triplet seems to be working so far.

Your numbers are alarming, but take heart. Treatment can really work pretty quickly to bring them down. Good luck.

Barbara