[yrz1955]

Smoldering with high lambda FLC level

by yrz1955 on Fri Oct 03, 2014 12:19 am

Hello,

I need some input please.

Back pain workup a few years back revealed a SPEP that was positive.

I had a bone marrow biopsy done in 2012 showing 15-20% plasma cells.

There was an M-spike in the serum of 1.1g/dL (11 g/L) and the serum and urine IFE confirmed the monoclonal nature: IgG lambda.

ESR was 1.
Creatinine normal at. 0.65
CBC normal
IgG 2303 (elevated)
IgA 95
IgM 26

A bone marrow biopsy was performed that showed 15-20% plasma cells (as mentioned earlier) and 13q- and +17 chromosomal abnormalities. Skeletal survey was negative. PET/CT also negative initially.

The back pain resolved with physical therapy.

Beta 2 micro globulin was normal at 1.37 and LDH was normal at 181.

Over the last 2 years, the lambda FLC has gone from the 750 mg/L range to 1190 mg/L now. Kappa FLC is normal and kappa / lambda FLC ratio remains low at 0.01.

CBC and CMP are normal.

M-spike went to 2 g/dL (20 g/L) a few months ago and now is 1.7 g/dL.

My main question is in regards to the significance of the lambda FLC level of over 1000. Is the absolute number concerning ? (I do not see many levels reported at that level on the forum.)

Is that enough in the absence of other CRAB criteria to consider therapy?

I realize that I may need to repeat the skeletal survey.

Age 46, no other medical conditions

Thank you very much.

[jhorner]

Re: Smoldering with high lambda FLC level

by jhorner on Fri Oct 03, 2014 9:46 am

Hello,

You may want to review this thread in which I asked a similar question and received an excellent response from Dr. Cohen. I can't be sure but it looks as though you are progressing based on his definition of biochemical progression. As to whether or not you qualify for treatment, that would still depend on CRAB criteria I think. Be sure to get a full work up to rule out CRAB.

"How to measure disease progression in smoldering myeloma?," Beacon forum discussion started Jul 11, 2014.

At some point I think moving disease for us smoldering patients will be enough to justify early treatment.

My FLC looks a lot like yours and 3 months ago, my ratio was 0.85. Drastic changes like these are not easily ingested. I don't know of any other cancer where they diagnose you and then say "just smolder for a few years" and we'll catch you later

Best,
J

[yrz1955]

Re: Smoldering with high lambda FLC level

by yrz1955 on Fri Oct 03, 2014 10:19 am

Thank you jhorner for your quick response.

Interestingly enough, I had reviewed your thread prior to posting.

Your lambda FLC level (25.1 mg/L) appears to be normal

My results are as follows:

Kappa Free Lt Chain 0.78 0.33 - 1.94 mg/dl Final
Lambda Free Lt Chain 2.51 0.57 - 2.63 mg/dl Final
Kappa/Lambda Ratio 0.31 0.26 - 1.65 Final

(multiply mg/dL results by 10 to get equivalent results in mg/L)

I think it is your ratio that was changing that was a concern for you specifically. In my case, the lambda FLC level is 1190 mg/L, or 119 mg/dL

That is my dilemma. Thanks.

[jhorner]

Re: Smoldering with high lambda FLC level

by jhorner on Fri Oct 03, 2014 10:47 am

Hello,

Not anymore, that was three months ago. My FLC ratio is now .01:( However, my lambda is high (not like yours) and kappa is low. This change in only 3 months.

Take care. I'd be curious to know why the uninvolved light chain crashes in numbers as well?

J

[JasonH]

Re: Smoldering with high lambda FLC level

by JasonH on Sat Oct 04, 2014 12:46 am

Hi YRZ.

I have been smoldering for 5 years with high M-spike, FLC and plasma cell %. I am not a physician but I have spoken to many since diagnosis and have learned that this is a very complicated disease and it is probably not a good idea to compare your lab results to those of other patients and make treatment decisions accordingly.

Also, the absolute numbers may be less important than the rate by which they are increasing / decreasing or other factors like your genetic profile and the presence or absence of certain chromosomal abnormalities.

Have you sought guidance from a myeloma specialist? I highly recommend that you do so if you have the time and ability.

I would be happy to answer any specific questions, if you are interested.

[Maro]

Re: Smoldering with high lambda FLC level

by Maro on Mon Oct 06, 2014 7:05 pm

Jason, could you share your numbers with us please?

[Dr. Prashant Kapoor]

Re: Smoldering with high lambda FLC level

by Dr. Prashant Kapoor on Tue Oct 07, 2014 11:48 am

Hello YRZ,

I am sorry to hear that your lambda (involved) free light chain level is increasing. Fortunately, at least for the past few months, the M-spike appears stable (1.7-2.0). Having said that, it would be worthwhile to get further imaging studies such as a PET scan or an MRI to better char­ac­ter­ize your disease, as you indicated that your x-rays are unremark­able. It would be important for you to see a myeloma expert and discuss the options in detail.

Smoldering myeloma patients who, at diagnosis, have an involved to uninvolved free light chain ratio of 100 or more have an approximately 80% of progressing to symptomatic myeloma or light chain (AL) amyloidosis within two years of diagnosis.

You may be eligible for ECOG National trial E3A06 for smoldering myeloma patients. You will find more information regarding trials, including this one, on the following website:

http://www.cancer.gov/clinicaltrials/featured/trials/ECOG-E3A06 .

Hope this helps. Wish you all the best.

[yrz1955]

Re: Smoldering with high lambda FLC level

by yrz1955 on Wed Oct 08, 2014 1:16 pm

Thank you Dr Kapoor for your analysis and for your time.

I did get a PET CT scan done originally, and it was negative. Should I repeat it to look for any involvement, as the other crab parameters are negative ?

Assuming the PET CT is negative, should I consider treatment (with Revlimid) outside of a study environment, or maybe observe trends for another 3-6 months?

I appreciate all the MD advisors taking time out of their busy schedules to give us their opinions as we navigate such a complicated environment.

Adam

[Dr. Prashant Kapoor]

Re: Smoldering with high lambda FLC level

by Dr. Prashant Kapoor on Fri Oct 10, 2014 12:45 pm

Hello YRZ,

A this juncture, given that there are no standard therapies for smoldering myeloma, it might be useful to find out if you are eligible to participate in a phase III clinical trial .