[Fozz]

Confused and worried

by Fozz on Wed Feb 18, 2015 2:39 pm

Hi all,

I wonder if anyone can help either to help me understand things or help stop me from worrying?

I'm 44 years of age, female and have 3 children.

I was diagnosed with MGUS about 7 weeks ago. My M-spike was 9 g/l and everything else in the bloods was normal. BMB showed less than 1% plasma cells with 77% of those with neoplastic phenotypes.

I started with a kidney infection 4 weeks ago, and my GP suggested I rang the nurse specialist, and she suggested another round of bloods. It's the results of these bloods that have worried and confused me.

My M-spike has risen from 9 g/l to 13 g/l IgA lambda, and my free light chain ratio is now high at 0.19 with a reference range of 0.26 to 1.65. My kappa is 7.4 mg/l (3.30 - 19.40) and my lambda is 39.8 mg/l (5.70 - 26.30).

Both the bloods for the MGUS diagnosis and these recent ones show everything else is normal (kidney function, calcium etc.).

I'm confused and worried because I understood it when they told me my diagnosis of MGUS that MGUS is benign, stable, and has a low risk of progression. I'm finding various references on the web, some saying a rise in ratio means progression, and others saying it can be normal to have a high ratio and still be MGUS.

How will they know if it's progressing without doing another BMB and is a BMB totally reliable?

Sorry I've rambled on a bit!

Thanks,

Kath

[Multibilly]

Re: Confused and worried

by Multibilly on Wed Feb 18, 2015 3:51 pm

Hey Kath,

I remember being where you are when my numbers went a bit over my original diagnosis figures. I can also appreciate your angst since you are a mom of 3 kids.

First, this is not that big of a change in your M-spike. Your numbers are going to fluctuate over time and you really need to look at the trends over time. Converting to the more typical units of measure for M-spike that are used in the USA, you basically went from 0.9 g/dL to 1.3 g/dL...again not that big of a change. And your involved/uninvolved free light chain ratio is only ~ 5.4 (39.8/7.4), which is quite low. You start to worry when the FLC ratio is approaching 100 or is steadily climbing by quite a bit over several tests. You could easily be back down to an M-spike of 0.9 g/dL (or lower) when you get re-tested.

Additionally, at your low marker levels, some of these tests are simply not as accurate as you may first think, including the free light chain assay and the SPEP M-spike measurements. So, some of this change could also be attributable to basic lab measurement variance and error.

BMB results can be even more variable than serum test results. This is because the myeloma disease is not spread evenly throughout our skeleton. Therefore, your doc can hit different pockets with different distributions of myeloma cells when he does the BMB (that is, you could have different BMB readings on the same day if the samples were taken just inches apart from one another).

In any case, your doc is very likely not going to want to run another BMB based on where your current numbers are currently sitting.

It really helps to do simple graphs of your markers over time to get an idea if anything is really changing in a big way. So, I might suggest graphing your M-spike, involved heavy chain, involved free light chain, and free light chain ratio over time. I also track hemoglobin, creatinine, albumin, BUN, calcium, B2M and my other heavy chains, but I am an engineer and I'm admittedly overly-preoccupied about tracking all these markers.

You can get an idea of some of the things I track and just how much the numbers can naturally vary over time by looking at the graphs here:

https://myelomabeacon.org/forum/fenofibrate-tricor-and-multiple-myeloma-t2690-30.html

How frequently are you due to be monitored / re-tested? You are going to want to ask to be imaged (MRI or PET/CT) from time to time. I assume you must have been imaged at least once if your doc went so far as to order a BMB for you.

Hope this helps put your mind at rest ...