[travisbevers1979]

Is my MGUS progressing?

by travisbevers1979 on Thu Sep 03, 2015 9:44 am

I am a 35yr old male, diagnosed with MGUS in December of 2011, i was misdiagnoes with Multiple Sclerosis for over a year due to severe Nueropathy of the hands and legs, after being treated for MS for over a year with no signs of improvement, i was finally diagnosed with MGUS after visiting UT Southwestern in Dallas,treatment. Initial bone marrow biopsy showed 5% malignent plasma cells, the other shocker was that they found what were called mast cells in my bone marrow, the actuall report read "Tryptase shows increased mast cells, up to 7% of elements especially concentrated in the lymphoid aggregate". This was in January of 2012, since then i see the Dr. every 6 months for blood work, my last visit was 8-18 and below are the test results.
The last number on the test is my test value.

FREE KAPPA, SERUM 3.3-19.4 mg/L 9.0
FREE LAMBDA, SERUM 5.7-26.3 mg/L 36.3
FREE KAPPA/LAMBDA RATIO 0.26-1.65 0.25

Protein Total 6.1-8.1 g/dL 7.0
ALBUMIN ELP 3.8-4.8 g/dL 4.3
ALPHA 1 0.2-0.3 g/dL 0.3
ALPHA 2 0.5-0.9 g/dL 0.5
BETA 1 GLOBULIN 0.4-0.6 g/dL 0.4
BETA 2 GLOBULIN 0.2-0.5 g/dL 0.3
GAMMA GLOBULIN 0.8-1.7 g/dL 1.3
ABNORMAL PROTEIN BAND 0.8
Evaluation reveals a restricted band (M-spike)
migrating in the gamma globulin region.


Also to note is that my Platelet count has dropped from 120Thousand/UL to 70 in the last year, i have Petichia on my lower legs. My Lambda Serum has elevated to 36.3 and the Kappa/Ratio is at .25, do these tests results show that my MGUS is active and should i be worried, they have not done a bone marrow biopsy or upep since 2012. Any help would be appreciated.

[Multibilly]

Re: Is my MGUS progressing?

by Multibilly on Thu Sep 03, 2015 12:35 pm

Travis,

You say you are worried about progressing, but you are only providing your latest lab figures and not your previous numbers for comparison.

Specifically, what were your previous free light chain and abnormal protein level (M-spike values) compared to these latest ones?

In any case, an M-spike of 0.8 g/dL and an FLC ratio of 0.25 are pretty darn low numbers.

I also wouldn't expect a doctor to order a bone marrow biopsy or UPEP with your kind of numbers. They would only tend to do that if there was a very significant change in the above numbers or if you started to show any CRAB symptoms (high calcium, low hemoglobin, high creatinine or the presence of lytic lesions or bone pain that was confirmed by a radiological exam).

But you should still continue to get your basic lab tests periodically done twice a year, which sounds about like the right frequency of testing if you are concerned about progressing. While it isn't for everybody, I really like tracking and graphing my numbers over time so that I have a clear picture of just what is happening.

[travisbevers1979]

Re: Is my MGUS progressing?

by travisbevers1979 on Thu Sep 03, 2015 1:58 pm

My apologies for not showing my last results, they are listed below. These labs are from February 2015. As before the last number listed is my lab result. My concerns are my platelets are dropping each time i go in for labs and now i have pitichia forming in my lower legs and a rising Lambda Serum, not sure if this means anything, with my Platelets dropping i would assume they would want to know why but they do not seem to worried. My Platelet count in Feb. 2015 were 84 Thousand/UL and the last labs in August they were down to 70Thousand/UL

KAPPA FLC,SERUM 3.30-19.40 mg/L 10.33
LAMBDA FLC,SERUM 5.71-26.30 mg/L 31.31
KAPPA/LAMBDA FLC RATIO,S 0.26-1.65 0.33

Protein Total 6.3-8.2 g/dL 7.0
ALBUMIN ELP 3.52-5.42 g/dL 4.30
ALBUMIN (%) 61.4
ALPHA 1 0.18-0.40 g/dL 0.29
ALPHA-1 (%) 4.2
ALPHA 2 0.45-0.97 g/dL 0.57
ALPHA-2 (%) 8.1
BETA GLOBULIN 0.30-0.59 g/dL 0.35
BETA 1 (%) 5.0
BETA 2 0.20-0.53 g/dL 0.27
BETA 2 (%) 3.8
GAMMA GLOBULIN 0.70-1.54 g/dL 1.23
GAMMA GLOBULIN (%) 17.5
M COMPONENT :
Present
M PEAK ID 1 :
IgG Lambda (Gamma region)
M COMP 1 (g/dL) 0.61
INTERPRETATION M component present identified by immunofixation as IgG Lambda (Gamma region).
Recommend serum immunoglobulin quantification by nephelometry. Recommend 24
hour urine collection for protein electrophoresis.

[Multibilly]

Re: Is my MGUS progressing?

by Multibilly on Thu Sep 03, 2015 3:58 pm

Thanks. We all naturally worry about where our numbers are going, but these kinds of changes in your M-spike and FLC numbers could be written off to normal day-to-day variations and/or uncertainty in the lab measurements themselves.

I'm not a doc, but I wouldn't worry about these numbers. These figures could just as easily go back down by these amounts on your next test.

Again, it's good to graph all these things over time so that you can put things in perspective as the numbers fluctuate.

Lastly, if you aren't being monitored by a multiple myeloma specialist (at least once in awhile), I'd suggest you think about it. Specialists can spot significant changes over time and/or can recognize if something is really going south....and it's good to have that relationship already established should you ever progress.