[violinpeg]

Lambda light chain levels not moving much with treatment

by violinpeg on Tue May 20, 2014 10:53 pm

I've been diagnosed with lambda light chain myeloma and have been on Revlimid / dexamethasone for two months. This is what the numbers look like so far.

March 28 - 4493 (Initial lambda light chain test )
April 7 - 4501
April 26 - 3518
May 1 - 3129
May 15 - 3754 (off week)

I'm wondering if it's normal for numbers to go up in the off week of the cycle. A specialist I saw at UCSF thinks the response is sluggish and I should add Velcade.

Looks like this isn't a great response so far. Am I doing something wrong? Need more positive attitude? Eat more alkaline food? More exercise?

I get two good walks a day. Trying to up the green vegetables and cut the sugar.

Or do I have absolutely no control?

Also just had a bad week of coughing (my pilot husband brought a bug home with him and my white cells are pretty low) and think I did something to my back.

Feeling discouraged.

[Ron Harvot]

Re: Lambda light chain levels not moving much with treatment

by Ron Harvot on Tue May 20, 2014 11:59 pm

Violinpeg,

Your post did not post enough detail to really tell much.

Beside the FLC [free light chain] assay you should have had a SPEP (Serum Protein Electrophoresis) and sIFE (serum Immunofixation) so as to tell the type of immunoglobulin that is in excess and if you have a measurable M spike.

The FLC Assay should show the kappa, lambda and ratio. The ratio is the most important. You could have a high lambda readings but a normal ratio and if so that would be a good sign.

Ron

[violinpeg]

Re: Lambda light chain levels not moving much with treatment

by violinpeg on Wed May 21, 2014 12:37 am

Lab Results:

Kappa Lt Chain, Free   3.3 - 19.4 mg/L  <1.5
Lambda Lt Chain, Free  5.7 - 26.3 mg/L  3754.0
Kappa/Lambda Ratio     0.26 - 1.65      <0.01

Total Protein          6.0 - 8.1 G/dL   5.6
Prot Electrophoresis   Normal pattern.  Abnormal

Hypogammaglobulinemia with a protein spike of 0.1 g/dL in gamma region, consistent with a monoclonal gammopathy
Interpretation by Pathologist: [name removed]

Albumin, SPEP          3.1 - 5.4 g/dL  3.9
Alpha 1 Globulin       0.1 - 0.3 g/dL  0.2
Alpha 2 Globulin       0.4 - 1.2 g/dL  0.6
Beta Globulin          0.6 - 1.2 g/dL  0.5
Gamma Globulin         0.6 - 1.6 g/dL  0.4

Paraprotein Concentration   Negative g/dL   0.1

IgM, serum             39 - 333 mg/dL   8
IgA, serum             89 - 581 mg/dL   11
IgG, serum             672 - 1760 mg/dL 292

I don't really understand the meaning of all the testing yet. I'll discuss it with my doctor tomorrow.

[terryl1]

Re: Lambda light chain levels not moving much with treatment

by terryl1 on Wed May 21, 2014 7:54 am

This looks strikingly similar to the results I had when first diagnosed. With true light chain only myeloma (20% of multiple myeloma), it is very common that all three Ig's are low ... immunoparesis or hypogammaglobulinemia. Unlike the more common types of myeloma, one immunoglobulin is not in excess (i.e. IgG kappa). Our SPEP's are usually normal, but the serum IFE is usually positive for the involved light chain. Mine was kappa and yours is lambda.

I don't see the results of the IFE. A 24 hour urine may be useful too.

[Wayne K]

Re: Lambda light chain levels not moving much with treatment

by Wayne K on Wed May 21, 2014 10:18 am

I have the same multiple myeloma as you have. I had Velcade and prednisone as my initial treatment and had a much better response then you are having. I'm not a doctor and I'm certainly far from well educated in the disease, but I wouldn't think you would want to question the doctor's opinion given the results to date.

[Ron Harvot]

Re: Lambda light chain levels not moving much with treatment

by Ron Harvot on Wed May 21, 2014 10:24 am

Based on these readings the lambda light chain and ratio are abnormal and with just RD are not responding as you would like. I would have a discussion with my oncologist. I believe he will likely add Velcade to the mix. The VRD combination is more powerful then just RD.

Ron