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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

Have MGUS, FLC ratio drifting down - what's it mean?

by angiebaldy on Wed Jun 11, 2014 12:46 pm

The free light chain (FLC) ratio at diagnosis can be a factor which increases risk of progression at diagnosis.

I am MGUS IgA lambda and my baseline FLC ratio was 0.59.

Over the last 2 years, my FLC ratio has slowly decreased from the baseline of 0.59 to 0.34 to 0.2. My kappa and lambda have remained within normal, but the ratio is now low (not extremely low, but under the low end of normal of 0.26) and I would like to know if I should be concerned.

Some other background of recent events is I have new pain in my jaw (went to dentist thinking it was a dental problem and my dentist said my teeth and gums are great, but I have some bone loss at the jaw line), new onset lower back pain (I do have severe spinal canal stenosis in the lower back),and now my Ferritin and Iron are low (Hgb is good at 13.4).

My M-spike is roughly the same at 0.89 and my last one was 0.8. IgA is the same at 892 (was 923), and my b2m has only slightly increased from 1.4 to 1.54.

My LDH is 186 or 500 (depending on the lab and values that were used, but both are within normal; however, it has increased from 172 to 186 or the different lab from 363 to 500).

I am having a bone density test and skeletal survey done tomorrow and I start IV iron next week.

I think this is ok but I guess it is the subtle changes that are worrying me. My new heme/onc thinks I need another bone marrow biopsy to either confirm I am still MGUS or have pro­gressed to SMM.

Thanks in advance for any answers!

angiebaldy
Name: angiebaldy
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
Age at diagnosis: 47

Re: Have MGUS, FLC ratio drifting down - what's it mean?

by elizabeth104 on Fri Jun 13, 2014 4:43 pm

HI Angie,

Thanks for asking this question. I would be interested in what your doctor says about this drop in FLC ratio. I am in a similar situation. I was diagnosed IgG lambda MGUS and a few years later reclassified to smoldering myeloma based on bone marrow biopsy. My ratio was normal at diagnosis at 0.79, and it has slowly crept down to just barely abnormal at 0.21 at my most recent labs. My lambda is still in range and my kappa below range.

Good luck with your upcoming tests!

Elizabeth

elizabeth104
Name: Elizabeth
When were you/they diagnosed?: 25 MGUS, 28 SMM

Re: Have MGUS, FLC ratio drifting down - what's it mean?

by angiebaldy on Fri Jun 13, 2014 9:06 pm

Elizabeth,

I actually looked at my trends since my MGUS diagnosis 2 years ago today and it has been ever so slowly trending down.

Baseline 0.59, then 0.54 three months later, 0.34 six months later, 0.26 six months later, and finally 0.20 a total of 2 years after initial diagnosis.

My kappa and lambda have always been in range until this last time, and they are like yours and below normal.

I will let you know what the doctor says. My follow up is coming up on Tuesday with my new doctor and I am going to point this out and see what he says. I also have my first appointment with my new multiple myeloma specialist on the 24th and I am going to bring it up to him.

I am changing multiple myeloma specialists only because I moved and my old one is now a 7 hour drive. Can't wait to see my new one at Winship Cancer Center. This is much closer to me at only 3 hours. Will post when I know something.

angiebaldy
Name: angiebaldy
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
Age at diagnosis: 47

Re: Have MGUS, FLC ratio drifting down - what's it mean?

by angiebaldy on Thu Jun 19, 2014 8:50 pm

I posted a few days ago but thought I would try again. Reader's digest version. Diagnosed with IgA lambda MGUS in June 2012. Baseline FLC was 0.59. It has been trending down and my most recent was actually abnormal at 0.2. I am concerned because I have new onset jaw pain and low back pain as well and bone tired fatigue. I am anemic but it looks like IDA. Should I be concerned about the ratio that has been trending down over the last 2 years?

angiebaldy
Name: angiebaldy
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
Age at diagnosis: 47

Re: Have MGUS, FLC ratio drifting down - what's it mean?

by TerryH on Thu Jun 19, 2014 10:05 pm

What did your doctor say at your appointment this Tuesday?

TerryH

Re: Have MGUS, FLC ratio drifting down - what's it mean?

by angiebaldy on Fri Jun 20, 2014 9:06 am

My doctor wasn't really very helpful with the question I had about the ratio. He said that maybe my multiple myeloma specialist whom I am seeing on the 24th. I am changing to Winship Cancer Center in Atlanta because it is closer to where I live now and I will be seeing Dr. Lonial. I hope he has a better explanation for me.

Angie

angiebaldy
Name: angiebaldy
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2012 MGUS Jan. 2014 SMM
Age at diagnosis: 47


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