[lovemotherhood99]

Trying to understand and compare Lab Results

by lovemotherhood99 on Mon Sep 09, 2013 6:10 pm

Hello! I am new to this forum, and new to the words Multiple Myeloma. My mom recently revealed to us that she has multiple myeloma. She was diagnosed back in 2009 and never said a word, and neither did our dad. They were hiding it from us thinking it would be too stressful for me to handle as I have CIDP and was diagnosed with it at around the same time my mom was diagnosed with multiple myeloma.

Now that I know, however, I am trying to figure out what stage she is in, or if it has progressed significantly.

While she has had a few symptoms, mainly an ongoing headache, for years, which gets worse if she bends to the floor to pick something up, (That in itself causes great suffering.), and some fatigue that went away with an adjustment to her Thyroid medication, the symptoms have never been significant enough to alter her life.

Her hematologist recently told her that he wants to start therapy. He would like for her to participate in a clinical study where she will be receiving either a chemo drug or placebo. If her multiple myeloma is so severe, would one want her to be on a placebo? We cannot figure out if her multiple myeloma has progressed significantly or not.

She is okay living her life as it has been. She does not want treatment unless it is absolutely necessary. She is afraid to stir things up by placing her on therapy she doesn't need. She feels okay, relatively speaking, of course.

I have her 2009 lab results and her current ones she received last week. I do not understand any of it, so please bear with me. can someone please help me and advise me...please?

Total protein in 2009: 8.4 (2013: 8.8)
Albumin in 2009: 45.4% 3.8 (2013: 43.0% 3.8)
Alpha 1 in 2009: 2.5% 0.2 (2013: 2.1% 0.2)
Alpha 2 in 2009: 10.5% 0.9 (2013: 10.3% 0.9)
Beta in 2009: 11.7% 1.0 (2013: 15.8% 1.4+)
Gamma in 2009: 30.0 2.5+ (2013: 28.9% 2.5+)
MSPIKE (Gamma) in 2009: 18.2% 1.5 (2013:16.4% 1.4)
Ratio A/G in 2009 & in 2013 is: 0.8

Protein Electro., S
Protein, Total, Serum in 2009: 8.4 (2013: 8.6)
Albumin in 2009: 3.8 (2013: 4.1)
% Albumin in 2013: 48
A/G Ratio in 2009: 0.8 (2013: 0.9)
Alpha-1-Globulin in 2009: 0.2 (2013: 0.2)
Alpha-2-Globulin in 2009: 0.9 (2013: 1.0)
Beta Globulin in 2009: 1.0
Beta in 2013: 0.9
% Beta in 2013: 10
Gamma Globulin in 2009: 2.5
Gamma in 2013: 2.3
% Gamma in 2013: 27
M-Spike in 2009: 1.5
Monoclonal Protein in 2013: 1.6
Globulin, Total in 2009: 4.6 (2013: 4.5)

Kappa Free Light Chains, S in 2009: 12.02 (2013: 1.36)
Free Lambda Light Chain, in 2009: 64.47 (2013: 9.54)
Kappa/Lambda Ratio in 2009: 0.19 (2013: 0.14)

I am really sorry if I have duplicated any of the test results, however, I simply decided to include everything on the various paper work. I do hope someone can please help me understand what is going on with my mom. I don't know if she's getting better or if she is getting worse. I do not know if she needs to be on definitive treatment or participate in a clinical study where she may or may not be receiving a placebo. I am very confused.

[Dr. Adam Cohen]

Re: Trying to understand and compare Lab Results

by Dr. Adam Cohen on Fri Sep 13, 2013 8:27 am

Your mother has a monoclonal gammopathy, meaning there is an abnormal protein (called an M-spike or M-protein on the protein electrophoresis) in her blood. However without more information it isn't possible to tell if she has active multiple myeloma, which always requires treatment, or if she has one of the precursors to active myeloma--either smoldering myeloma or MGUS-- which are not usually treated, just watched closely. To have active myeloma, she needs to have evidence of end-organ damage, the so called "CRAB" symptoms: high calcium in the blood, renal (kidney) failure, anemia, or bone lesions/damage.

I suspect she didn't have any of these features since she was diagnosed in 2009 and hasn't been treated. Her M-spike hasn't changed between 2009 and 2013, so she doesn't appear to be progressing, though you'd need other information (e.g blood counts, calcium levels, creatinine levels, bone xrays) to know this for sure. Most likely she has smoldering myeloma from your description. Smoldering myeloma in general has a risk of progressing to active myeloma of about 10% per year, and the standard of care is just close observation, since previously no studies had ever shown any benefit of starting early treatment when patients had no symptoms or end-organ damage yet. There are some tests now available, however, such as the serum free light chain assay, that can identify a subgroup of smoldering patients with a higher risk of progression (about 50% in the next 2 years). Thus there are now a number of clinical trials trying to see if intervening early in these "high-risk" patients with a novel drug can delay or prevent the progression to active myeloma. I suspect your mom is being offered one of these trials, but you'd have to ask her doctor. A placebo arm is justified in this setting since the standard of care would be to do nothing and just observe. Whether or not to do the trial is up to her. As long as she is being watched closely they will be able to start appropriate treatment at the first sign that she' s progressing, whether she is on the trial or just continuing on observation.
I hope this is helpful.