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Is my father's multiple myeloma relapsing?

by ParvinZ on Wed Aug 12, 2015 3:51 pm

Hello Everyone,

Hope you're doing well today. Just wanted some advice regarding my dad's condition.

He was diagnosed with kappa light chain multiple myeloma last May, stage I, at age 57.

He was put on dex, thalidomide and Velcade and did really well, achieving stringent complete remission in 2 cycles. However, we continued the chemo as recommended by our hema­tol­o­gist and then, after a total of 5 cycles, did an auto stem cell transplant (SCT). (This was in No­vem­ber.)

He recovered really quickly.

And then he was put on lenalidomide as maintenance chemo. We did another round of tests again in May, but everything was alright, besides a tiny rise in beta 2 microglobulin. However, the kappa lambda ratio was fine and the electrophoresis didn't show anything abnormal either.

But we just got back new labs today.

His beta 2 microglobulin - 2629
Kappa free light chains - 60.93 mg/L (ref range: 3.3-19.4)
Lambda free light chains - 20.66 (ref range 5.7-26.3)
Kappa- lambda ratio - 2.95

The serum immunofixation electrophoresis says faint monoclonal IgG kappa light chains paraproteins present.

The serum protein electrophoresis says a faint band present in gamma globulin region.

So these were today's labs and I'm really worried about a relapse. Was hoping someone could help me make sense of this, because he's had no symptoms and has generally been in great shape and in high spirits.

Is there any way this could NOT be a relapse? How concerned should we be?

I'm really sorry for the long post, just really really worried. When he was first diagnosed, every­thing seemed to be working out, and all the stats said he was doing great. And that things were looking good for us. But now I'm just really worried..

I'd be really grateful for the advice. Thank you so much in advance.

Warmest wishes,

Zoya

ParvinZ

Re: Is my father's multiple myeloma relapsing?

by antelope1225 on Wed Aug 12, 2015 4:23 pm

Hi ParvinZ.

I would guess that the number you thought was the "beta-2 microglobulin" was actually a different microglobulin. I don't think the beta-2 microglobulin would go to 2629.

This shows the International Staging System and a beta-2 microglobulin of 5.5 or greater is stage III multiple myeloma.

If the kappa-lambda ratio is 2.95, that is only slightly elevated.

The International Staging System

This system divides myeloma into 3 stages based only on the serum beta-2 microglobulin and serum albumin levels.

Stage I:
Serum beta-2 microglobulin is less than 3.5 (mg/L) and the albumin level is 3.5 (g/dL) or greater

Stage II:
The beta-2 microglobulin level is between 3.5 and 5.5 (with any albumin level),
OR
The albumin is below 3.5 while the beta-2 microglobulin is less than 3.5

Stage III
Serum beta-2 microglobulin is 5.5 or greater.

Cathy

antelope1225
Name: Cathy1225
Who do you know with myeloma?: Myself
When were you/they diagnosed?: May 25 2012
Age at diagnosis: 55

Re: Is my father's multiple myeloma relapsing?

by Jonah on Wed Aug 12, 2015 7:08 pm

The beta2-microglobulin level that was listed in the original post may be measured in mcg/L. Usually here in the U.S., you see it with units that are either mcg/mL or mg/L, which end up being equivalent. But if it is measured in mcg/L, it will be 1000 times as high as what it would be in either mg/L or mcg/mL.

You never want to judge whether a relapse is happening based on a single set of lab results. Instead, you want to look at how the results compare to trends in the results. Have your father's free light chain levels and ratio bounced around a bit, so that the latest results aren't nec­es­sarily strange? Or is the rise in his kappa level a definite spike upwards, outside what you've seen in his previous results?

Also, you didn't mention whether your father has any kidney damage. If he does, then the normal reference range for the free light chain ratio is different. It's 0.37-3.10 instead of 0.26-1.65.

If the latest kappa level is definitely a spike upwards, your father probably should have his free light chain levels checked again in a month. Since he has light chain myeloma, the FLC levels and ratio are what you want to be watching carefully.

Did your father have testing done on the cells from a bone marrow biopsy at the time he was diagnosed to determine what sort of chromosomal abnormalities, if any, are in his myeloma cells? Those abnormalities, usually found through "FISH" testing of the myeloma cells, are considered a good reflection of how aggressive his disease may be.

One last thing. There is some evidence that more aggressive multiple myeloma tends to re­spond more quickly to treatment with new drugs such as thalidomide, Revlimid, and Velcade, but that remission lasts for a shorter time. There has been some debate on this point, however, here in the forum. See, for example, this forum discussion:

"Speed of response to treatment" (started Jan 16, 2014)

which was sparked by this article:

"Researchers Take A Closer Look At Extended Revlimid-Dexamethasone Therapy For Newly Diagnosed Myeloma," The Myeloma Beacon, Jan 15, 2014

I bring this up because achieving a stringent complete response after just two cycles of treat­ment is, in fact, a very fast response, and reading that immediately made me think about the research on speed of response and disease aggressiveness.

To me, this is just another reason to make sure you put your father's recent lab results into perspective by going over his previous results and looking at the trends.

Good luck!

Jonah

Re: Is my father's multiple myeloma relapsing?

by Multibilly on Wed Aug 12, 2015 9:14 pm

Jonah got it right on the differences in units of measure for the the beta2 microglobulin (B2M). My B2M is also reported in ug/L, with a reference range of 1010-1720 ug/L - so the magnitude of the B2M looks correct to me.

But ... B2M is not really used to monitor disease progression/relapse. See Dr. Libby's comments here:

"Beta 2 microglobulin" (forum disc. started Mar 8, 2015)

Also, see Dr. Libby's comments on the definition of relapse in multiple myeloma, as originally stated by the IMWG in 2011, here:

"What exactly is the definition of relapse?" (forum disc. started Dec 16, 2014)

As Jonah pointed out, you can't determine relapse by just looking at just one set of lab numbers.

Based on just the FLC numbers being on the rise, the relevant section in the above thread is as follows:

In patients who do not have clinical relapse, a significant paraprotein relapse is defined as ... an increase in the ... involved FLC level by more than or equal to 20 mg/dL (plus an abnormal FLC ratio) in 2 consecutive measurements separated by less than or equal to 2 months

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Is my father's multiple myeloma relapsing?

by Boris Simkovich on Wed Aug 12, 2015 11:08 pm

Thanks Cathy, Jonah, and Multibilly for helping Zoya out.

Zoya, just a quick follow-up to Multibilly's comments. Note that the definition of relapse that he quotes, which is in terms of a change in the involved free light chain level, is 20 mg/dL.

The lab that reports your father's free light chain levels reports them in mg/L. 20 mg/dL equals 200 mg/L. (1 deciliter = one tenth of a liter, so 1 liter = 10 deciliters.)

So your father's kappa free light chain level would have to be above its lowest level by 200 mg/L, as confirmed by two separate tests within 2 months of one another, for him to have officially relapsed.

Boris Simkovich
Name: Boris Simkovich
Founder
The Myeloma Beacon

Re: Is my father's multiple myeloma relapsing?

by ParvinZ on Fri Aug 14, 2015 1:28 am

Thank you so very much for all your advice, very thoughtful responses and all the guidance and I'm so sorry it took so long to reply. We'd been going in and out of the hematologist's office.

The thing is, our hematologist, while he also said we need to observe trends and wait for a month to test again, he did say that it looks like it may be back. It was the scariest feedback we've been given because he didn't leave us with many options. He mentioned we could look at a clinical trial perhaps. But is it that bad? Is the prognosis that terrible if you relapse within the first year after the auto SCT.

Also, his fish panel / cytogenetics suggested that he was not a high risk candidate.

ParvinZ

Re: Is my father's multiple myeloma relapsing?

by antelope1225 on Fri Aug 14, 2015 3:34 pm

Hi ParvinZ,

I know how hard it is to wait for a test and fear the worst. We will be hoping with you that your father's myeloma is not relapsing. But there are other medications his doctors can prescribe - and it seems that different people respond to different treatments.

Luckily he was diagnosed when just at Stage I, so hopefully there is little damage to his organs.

Please keep us posted how he does.

Cathy

antelope1225
Name: Cathy1225
Who do you know with myeloma?: Myself
When were you/they diagnosed?: May 25 2012
Age at diagnosis: 55


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