[Lindz]

Polyclonal disorder ... or monoclonal in hiding?

by Lindz on Sat Oct 17, 2015 8:53 pm

Hi everyone,

I don't think I have multiple myeloma, but am concerned about other light chain disease or other malignancy.

I am a 47 year old female. I have a slightly raised IgM. No M-spike detected. But my K/L ratio is off.

Long story short – 16 yrs ago in 1999, symptomatic nervous system symptoms. IFE showed polyclonal IgM. Had a bone marrow biopsy done. Bone marrow biopsy was fine. So was flow cytometry. However, cytogenetic result came back as having a deletion on some of my cells consistent with lymphoproliferative disease or plasma cell issue. The doctors could not explain it. My symptoms subsided and I went on in good health for the next 15 years.

Here I am 15 years later with return of almost exact symptoms but worse and not leaving. Repeat test shows polyclonal IgM. However, this time kappa-lambda free light chain test done. Kappa 19.3, lambda 9.2, ratio abnormal 2.08 (range 0.26 - 1.65).

All other values and blood, urine are perfect, except reactivated Epstein-Barr virus (EBV) and possibly Lyme (some doctors say yes, some say no). I also have some autoimmune markers in my blood but no defined disease according to rheumatologist.

Same hematologist as 1999. Still does not believe it is blood/cancer issue. Does not want to repeat bone marrow.

Everything I read says polyclonal usually always have normal ratios, and mine is slightly higher. My kappa is almost about to go out of range. I did not have the FLC test in 1999, so have nothing to compare it.

Is it possible to have a hidden monoclonal for 16 years? Would my FLC be much higher if it were monoclonal? Is this an MGUS situation?

No one can identify what this polyclonal is and until they do I keep coming back to what if the M is too small to see.

Your thoughts. I'm super scared. I have very young kids.
L

[Multibilly]

Re: Polyclonal disorder ... or monoclonal in hiding?

by Multibilly on Sun Oct 18, 2015 10:22 am

Hi Lindz,

First off, I'm not a doc, so only your doctor can say with any certainty what's going on.

What exactly is your serum IgM level?

An autoimmune condition could definitely affect your free light chain values. Also, since your IFE was negative for monoclonal protein, it very likely means that you didn't have a monoclonal gammopathy. But it wouldn't hurt to periodically repeat an IFE and SPEP test (which are pretty simple and inexpensive tests to do).

I'm assuming that your units of measure for you free light chains are in mg/L? If so, your kappa is borderline high and your lambda is normal. Also, your k/l ratio is a bit high, but still pretty close to the normal high limit of 1.65. So, if you assume for the time being that you have a high kappa, normal lambda and a normal k/l ratio, this chart would suggest a "polyclonal Ig increase or renal impairment"

http://www.thebindingsite.com/interpretation-of-freelite-results

But my assumptions are admittedly a bit of a perverted interpretation of your free light chain values when I apply them against the tables above. In any case, given you potentially have an autoimmune condition, only a hematologist can say with any certainty what's going on here.

Not sure this helps. Good luck with all this.

[Lindz]

Re: Polyclonal disorder ... or monoclonal in hiding?

by Lindz on Mon Oct 19, 2015 11:46 am

Thanks so much for responding. I realize polyclonal is not really the focus of this board.

As for your question, my IgM is low – it's about 300. The highest it has ever been is 1999 when it was 583. My doctor said that if it were malignant, I wouldn't be here now and my IgM is not the type of numbers they see with hyperviscosity issues. And polyclonal IgMs don't act this way (that's what he said).

Hey, I get that, I'm just trying to figure out if there is a hidden MGUS / monoclonal component. I think this is one of those situations that if you look too hard, you will find something wrong with everyone. Most people have no clue what a free light chain even is, let alone to fret over a slightly high ratio!!! I guess I just can't get that old cytogenetics report out of my mind that says there is something lymphoproliferative going on. Never got a good explanation for that. Maybe never will.

Thanks again. I wish everyone on this board the best. It's all very scary stuff. And you want to be proactive but then again it doesn't seem that knowing about something in advance can really help anyone. I've been trying to deal with this polyclonal mess for 16 years aggressively with the best doctors, etc., and I STILL can't identify it. Sometimes only time makes things manifest.

L