[fionathomas]

Very high kappa free light chain levels - why?

by fionathomas on Tue Oct 25, 2016 8:08 pm

My partner was diagnosed with multiple myeloma in August. I've listed below his serum kappa free light chain values between August 31 and October 19.

I've searched around to find info about why his values would continue to increase even with Cytoxan and Velcade treatment, along with plasmapheresis and dialysis (CT scan used to diagnose multiple myeloma caused acute renal failure that he has yet to recover from). He has now added Revlimid to the treatment plan, so hopefully that will help.

I just haven't seen anywhere with values this high, so I don't know how to feel about it.

Kappa Free, Serum (mg/L, 6.5-29.9 standard range)

 1030.4 (August 31, 2016)
 1201.5
17260.8
13459.2
 9804.8
18284.8
14860.8
25971.2
10630.4
13094.4 (October 19, 2016)

[Ron Harvot]

Re: Very high kappa free light chain levels - why?

by Ron Harvot on Wed Oct 26, 2016 2:44 pm

Those are very high numbers. You did not mention the kappa / lambda ratio, but I surmise it is very high also. He is already under treatment but appears not to be responding. Have you or your partner asked the doctor the same question you posed on this site? If adding in Revlimid does not work, than something else needs to be tried. Where is he being treated? Is he seeing a multiple myeloma specialist or just a general oncologist? You may want to consider getting a second opinion with respect to diagnosis and treatment.

Good luck to you and your partner!

[fionathomas]

Re: Very high kappa free light chain levels - why?

by fionathomas on Fri Nov 04, 2016 9:10 am

He had an appointment yesterday with his oncologist, who is actually a myeloma specialist with the Cleveland Clinic. The Revlimid is also not working well enough, so they have added another treatment to the mix (can't think of the name of it just now). Ratios have also been high, up to 17,000.

[daved]

Re: Very high kappa free light chain levels - why?

by daved on Tue Nov 08, 2016 9:24 am

At diagnosis I was at over 110,000 free kappa. I had three cycles of VDT-PACE, a stem cell transplant, and a bone marrow transplant. I'm currently two years post bone marrow transplant and on Pomalyst maintenance, with my free kappa sitting around 35.

Best of luck to the two of you. Keep asking questions

[Ron Harvot]

Re: Very high kappa free light chain levels - why?

by Ron Harvot on Wed Nov 09, 2016 4:05 pm

The Cleveland Clinic has excellent multiple myeloma specialists, so you are in good hands. The newest drug that seems to offer a lot of promise is Darzalex (daratumumab). Iit is a monoclonal antibody that targets the CD38 protein. It is often combined with dexamethasone and either Velcade or Revlimid. It has shown great results with many patients that have had numerous other lines of treatment that have failed or relapsed.

Hope whatever it is they try works for him! The two of you are in my thoughts.