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Rising, falling & rising serum lamba free light chains

by Kate C on Mon Jan 21, 2019 8:22 pm

I had a stem cell transplant in mid 2016 for IgA multiple myeloma. My IgA has been steadily rising but not over upper limit as yet. My lambda serum free light chain level has risen dramatically, then gone back to normal, and now risen to above when I was first diagnosed.

Is this sort of behavior for lambda light chain levels unusual, or is it fairly common? Does it have any particular meaning?

Kate C
Name: Kate C
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2015
Age at diagnosis: 71

Re: Rising, falling & rising serum lamba free light chains

by Ron Harvot on Tue Jan 22, 2019 5:06 pm

Hi Kate,

Are you on any maintenance protocol and if so has that been adjusted recently?

What about your SPEP test (M-spike)? Is it showing any changes?

When you say your serum free light chain has gone up, can you elaborate more? Do you mean the involved chain has gone up, or the ratio has gone up, or both? Are any of the light chains out of the normal range?

How about a bone marrow biopsy? Have you had one recently, and if so did it show a higher percentage of myeloma cells?

Many people fluctuate on tests, so you need a series to show a trend.

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Rising, falling & rising serum lamba free light chains

by Ian on Wed Jan 23, 2019 6:40 pm

Hi Ron,

I think lambda is Kate's involved free light chain because she specifically mentions that her lambda level has bounced around. I agree, however, that it would be good to know exactly what the lambda values (with units) have been, and also what her kappa-lambda (or lambda-kappa) ratio has been at various times.

Hi Kate,

Free light chain levels can bounce around a bit, so you definitely want to look at trends. It is possible, though, for a myeloma patient's involved (elevated) free light chain level to climb sharply without any change in the patient's paraprotein level (M-spike). When that happens, it's a form of relapse known as "free light chain escape." It happens in just a few percent of patients who clearly had an elevated paraprotein level (M-spike) at diagnosis.

Hopefully in your case your lambda level is just bouncing around but basically flat when you look at the trend.

Cheers!

Ian

Re: Rising, falling & rising serum lamba free light chains

by Kate C on Wed Jan 23, 2019 8:04 pm

Thank you for your help.

When first diagnosed at the end of 2015, the bone marrow biopsy came back over 50% with patches of 93% myeloma cells. After the bone marrow transplant, the IgA was virtually zero but is climbing steadily, but still under upper limit.

About 6 months ago the free light chains went from 24 to 112, back to 25, then up to 140 last test, with abnormal ratios the times when the tests were high.

I didn't ask the right questions of the doctors because I was so surprised and was a bit speechless. Any help would be appreciated.

Ron - I'm not on any maintenance therapy. I was on thalidomide and dexamethasone for 9 months post transplant but had a psychotic event that was attributed to the dex. Not on anything now.

Kate C
Name: Kate C
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2015
Age at diagnosis: 71

Re: Rising, falling & rising serum lamba free light chains

by Ron Harvot on Thu Jan 24, 2019 7:04 pm

Kate,

Since you were on thalidomide it sounds like you are likely outside of the U.S. The most prescribed drug for maintenance after a stem cell transplant in the U.S. is Revlimid. It is given without dex or with dex in maintenance and comes in a variety of dosages from 5 mg up to 25 mg. You may ask your doctors if that is available for you. Some countries only prescribe it for relapsed patients. If you are in one, perhaps, given your climb in the serum free light chain numbers, maybe you would qualify.

The serum free light chain test measures the kappa and lambda chains and provides a ratio between the two. The normal ranges are:

kappa 3.3-19.4 mg/l
lambda 5.71-26.30 mg/l,
kappa/lambda ratio: 0.26-1.65.

The chain that is way off the range is referred to as the involved chain. Whichever chain is bouncing for you up to 140 would be the involved chain. More than likely the ratio is also out of range as well.

Second, do you have an M-spike? If not, you have light chain only multiple myeloma which is only trackable by the serum free light chain test. I would ask about it.

How often are you tested? If the next test continues to be high then you probably need to start treatment with one or more of the novel agents such as Revlimid.

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Rising, falling & rising serum lamba free light chains

by Kate C on Fri Jan 25, 2019 6:46 pm

Thank you Ron. You are knowledgeable; I am in Sydney, Australia. Yes I did have an M-spike which rose dramatically, bringing on the stem cell transplant. That virtually disappeared but is slowly rising but still under the upper limit. The current lambda reading of 140 is just below the 166 when I was first diagnosed.

My doctor said he was going to judge my progress mostly using lambda serum free light chain results. He has been away for the past 7 months and I've had young fill-in doctors but will have my specialist back again for my next appointment in April. My tests are 3 monthly at the moment.

I should learn how to ask the right questions of my doctors. The kappa/lambda is out of whack when the lambda is high.

Thanks again Ron. Feels much better having someone to talk to.

Kate C
Name: Kate C
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2015
Age at diagnosis: 71


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