[johanna]

Does normalised kLC mean a CR in LCMM ?

by johanna on Thu Mar 06, 2014 12:12 pm

First of all would like to thank very much Dr. Ken Shain for his reply on previous post about plasmacytoid lymphocytes, we have a better understanding of the matter now ...

Ian went through autologous SCT at beginning of January and all went reasonably well.
still some gastrointestinal problems / sickness now & again.

Light chains before the procedure were around 500 kappa (Light chain only myeloma) and now they seem to have normalized. The count shows 13.68 ml / L , with a normal lambda and a ratio of 0.842 (kappa/lambda)

Is this a complete response ? does this result enter in a ''complete response'' area ?

Ian's myeloma seems to be a bit more difficult to monitor as a marrow biopsy is not useful at this stage, the disease is diffuse (from last marrow biopsy)

SPEP shows no spike , and no BJ in urine.

Ian's response to traditional treatment : CTD / VCD was not what we expected , as disease behaved like refractory disease from our point of view, with climbing kappa chains after only a few months while still on treatment. this brings back a bit of hope to us , especially with normalized kLC

Should we perhaps get a more sensitive test for MRD ? our oncologist is following the ''watch & wait'' approach.

thank you

[Multibilly]

Re: Does normalised kLC mean a CR in LCMM ?

by Multibilly on Thu Mar 06, 2014 1:18 pm

First, congrats on making progress with the disease.

I can see your dilemma in trying to figure out CR status given your inability to reliably use bone marrow biopsy test results as a metric.

I guess my question would be what would you do differently if a more sensitive MRD test revealed some level of disease activity, while his FLCs remained normal?

[Dr. Jason Valent]

Re: Does normalised kLC mean a CR in LCMM ?

by Dr. Jason Valent on Thu Mar 06, 2014 1:24 pm

From a definition of complete response standpoint, normalization of the serum abnormal light chain with normal serum light chain ratio and negative serum and urine immunofixation for m-protein is a complete response.

I don't do bone marrow biopsy off a clinical trial to prove this.

I may be in the minority of myeloma doctors on this, but the tests for minimal residual disease are not necessary.

[johanna]

Re: Does normalised kLC mean a CR in LCMM ?

by johanna on Fri Mar 07, 2014 2:18 pm

Thank you both Dr. J. Valent and Multibilly for your input.

Since Ian never had m-protein in the serum , not even when at high values , like 9000 kLC ml/L and no BJ , than I guess this can be considered a CR.

We just don't know if it's a sustainable response. in view of previous treatment, which was disappointing with little response (but still dramatic drop in sFLC) and refractory disease, we tend to look for other tests to show us where we are at this point.

1 option. A 2nd SCT, if there is MRD ... sooner that later ??! I suppose to waiting for the myeloma to relapse (collection in harvesting days was over 5.5, which is enough for 2 SCT). I read if second SCT is given at relapse, most patients do disappointing with response rates usually halved or more compared to first SCT.

2 option. Focus more on supplements. Curcumin. Nigella sativa & others + hyperthermia in Germany which worked WONDERS on ian's myeloma )))

Thanking you kindly.