[Benedict28]

Climbing kappa light chain level and vision loss

by Benedict28 on Wed Aug 03, 2016 12:05 am

Hello,

I lost my brother a few years back to aggressive multiple myeloma, and since then I have been diagnosed with having polycythemia vera (PV), confirmed by JAK2 gene test. Have had some severe pericarditis attacks, a complicated cholysystectomy operation, and various other things. Interesting times.

I kept feeling unwell generally despite PV being a manageable illness, and my treatment for it continuing unhindered, so I changed GP's in a quest for answers. He tested me for POEMS syndrome and that came up negative, but it did show elevated kappa light chain, with a normal ratio.

Six months later this was checked again, last week, and it (kappa) was found to have kept climbing (now at 39 from 27 last time), while my ratio stayed within normal limits.

My brother's myeloma was so aggressive, I am worried that this might be indicating the early stages of same. My hematologist seemed quite unconcerned by the previous result, and fair enough too, only a slight elevation.

But with the upwards trend continuing, should I be worried and asking for another bone marrow biopsy, etc? (Last one was about four years ago.)

I should add that I got the shock of my life on going for an eye test on Monday on being told I had lost vision in my left eye (about 70%). I had no idea as I had great vision normally. I didn't realise because apparently my right eye and brain are working overtime to overcome this.

Also I have HS (hereditary spherocytosis) and I'm 48 years old. I am permanently Iron deficient because of my treatment for PV (venesection) and take aspirin and proton pump inhibitors because of GERD associated with sliding hiatal hernia.

Any tips or advice for my next, as yet unscheduled meeting with my hematologist would be very gratefully received.

Thanks

[TerryH]

Re: Climbing kappa light chain level and vision loss

by TerryH on Wed Aug 03, 2016 6:48 am

Hello Ben,

Are the kappa light chain results you report from a blood test or a urine test? The blood test rests are considered much more reliable.

Also, are the test results for FREE light chain levels, or TOTAL light chain levels. FREE light chain levels from a blood test are the most useful results to get and track.

It is really the ratio that is the most important in determining whether elevated free light chain levels are due to multiple myeloma or a related plasma cell disorder. If the ratio is not noticeably outside the "normal" ("reference") range, the cause of the elevated light chain levels is more likely to be an infection or inflammatory process.

There is a table in this forum thread that can be helpful for interpreting free light chain test results and trends in the results:

"Increase in free light chains - does it mean anything?" (started May 4, 2015)

Finally, free light chain levels and the free light chain ratio can bounce around a fair amount, even in healthy people. So you really want to focus on trends over several sets of results rather than a single change from one test to another.

One of the members of this forum has kept track of his main myeloma-related lab results and posts them in graph form occasionally here in the forum. You can see in those results how the free light chain results can bounce around.

Best of luck to you.

[Benedict28]

Re: Climbing kappa light chain level and vision loss

by Benedict28 on Wed Aug 03, 2016 8:27 pm

Hi TerryH,

Thanks for your reply.

The test was done using blood and was a serum free light chain test.

The most recent result was:

Kappa free light chain 34.6 mg/l (3-19)
Lambda free light chain 25.1 mg/l (6-26)
Kappa / lambda FLC ratio 1.4 (0.26-1.7)

My previous results from Oct last year were:

Kappa free light chain 23.5 mg/l (3-19)
Lambda free light chain 24.9 mg/l (6-26)
Kappa / lambda FLC ratio 0.94 (0.26-1.7)

So, only a small increase I know, and numbers still very small compared to numbers I see associated with other people. I suppose it's just I get a little nervous given the family history. I take your points though, and am happy that my ratio, while climbing slowly it might appear, is still within normal range.

Also, point taken that it's only two test results, and the lab recommends testing again in 3 months, as I'm fairly sure my hematologist will too, so I guess I'll just sit tight. My brother didn't have too long after diagnosis though, so I'm keen to get as good a 'heads up!' as I can.