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Is relapse the only cause of high free light chain level?

by lrankin on Wed Mar 16, 2016 9:25 pm

My husband's kappa free light chain level recently went from 7.06 (in Jan 2016) to 42 (March 2016). He hasn't been this high since he started treatment. See treatment history below.

So besides multiple myeloma surfacing, could there be another more benign reason for this? One theory was he could have been dehydrated when he did the blood test. Is that possible?

I hope there can be other reasons.

I know ONE test does not indicate a trend. But is it possible it was 42 and it would go back down? I was told (not by a doctor, but by someone who counsels myeloma patients) that they have never seen it go up and come down. It could stay stable.

Treatment History: Revlimid, Velcade, and dexamethasone (RVD), autologous stem cell transplant in October. We were deciding on maintenance plan and making a decision this month.

lrankin

Re: Is relapse the only cause of high free light chain level

by joe on Thu Mar 17, 2016 7:11 am

Hi,

I can just say that my myeloma free kappa has never been normal, but M-spike is 0 for over a year. My doctor says he is not concerned with it as long as myeloma is in control.

There are so many on this board that have such knowledge that I am sure they will help you with your question.

joe

Re: Is relapse the only cause of high free light chain level

by Little Monkey on Thu Mar 17, 2016 7:36 am

Ask the doctor to retest via the free light chain assay. Sometimes it could just be a one-off.

Little Monkey
Name: Little Monkey
Who do you know with myeloma?: Father-stage 1 multiple myeloma
When were you/they diagnosed?: March/April of 2015

Re: Is relapse the only cause of high free light chain level

by lrankin on Thu Mar 17, 2016 10:18 am

Joe - If I may ask, what has been your treatment journey? Induction? Stem cell transplant? Also, are you on treatment now?

Little Monkey - Thank you. I think they like to wait a month to redo the test. It is killing me not to know.

lrankin

Re: Is relapse the only cause of high free light chain level

by MaryB on Thu Mar 17, 2016 11:10 am

My husband has high kappa (44) and lambda (41) free light chain levels. The doctors say higher than what they would like, BUT we go by the ratio of the two. If the ratio is in the normal range, he is fine. My husband's ratio is 1.07 (normal range).

Doctors have told us number 1 is the range of the M-spike, number 2 the ratio of the kappa and lambda.

MaryB

Re: Is relapse the only cause of high free light chain level

by lrankin on Thu Mar 17, 2016 1:34 pm

His ratio is out of whack, too. Ratio is 4.9 (1.62 is the high end of the normal range).

The only number that went up was kappa from 7 to 42. Lambda still in range.

We are going to restart treatment. Just so discouraged since so soon after auto SCT.

lrankin

Re: Is relapse the only cause of high free light chain level

by Jonah on Thu Mar 17, 2016 1:51 pm

Why was the decision made to restart treatment? Was it because of the elevated kappa free light chain level and the elevated kappa/lambda ratio? Or was there some other reason – for example, other lab results that were also outside the normal range?

Jonah

Re: Is relapse the only cause of high free light chain level

by lrankin on Thu Mar 17, 2016 7:27 pm

Jonah - I might have spoken prematurely. We happen to have an appointment with Dr. Hoffman of Sylvester Cancer Center on Monday. I will provide an update.

Sometimes people don't let the group know what happened. I like to know what the outcome was for others' scenarios. I will repost on Monday. Thank you.

lrankin

Re: Is relapse the only cause of high free light chain level

by Jonah on Thu Mar 17, 2016 9:43 pm

Thank you for the update, lrankin. I agree – it is nice when people follow up and share what they've learned, or even say what they already know when they first ask a question here in the forum.

It's great that you have Dr. Hoffman as your specialist. He's very knowledgeable and has a lot of experience. I'm sure he will want to have a good reason for re-starting treatment, and I would be more than a little surprised if just one free light chain result will convince him to re-start intensive treatment.

He may push for maintenance therapy, but he might have done that regardless of the free light chain results! ;)

Good luck!

Jonah

Re: Is relapse the only cause of high free light chain level

by joe on Fri Mar 18, 2016 6:10 pm

Hi Irankin,

I had a stem cell transplant. It worked for 2 weeks, then did nothing. I was on 3 different chemo, one of them was Pomalyst. Did nothing. As the doctor said, I used up all the chocolates in the box. So I went on a trial drug program. My m- spike at the time was 5.50, my IgA was 5500 (very high). The trial I am on is Revlimid, dex, and the trial drug is panobinostat (Farydak) 6 pills every month.

In 3 months my m-spike went from 5.5 to 0. My IgA from 5500 to normal. It's been like this for 13 months. Also, I just did a PET scan and all is good there. But my free kappa through this journey has been outside of normal for all this time. My doctor said many times he is not concerned with that and neither should I be as long as the myeloma is under control.

I hope this is helpful to you.

JOE

joe

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