[Multibilly]

Risk of progression classification - smoldering myeloma?

by Multibilly on Wed Dec 26, 2012 3:59 pm

My doc just got my radiology report back from a PET/CT scan which indicated that I do not have any bone lesions to be concerned with at this time (yipee!!) , and therefore I don't meet any of the CRAB criteria. I'm going to have another team at a different hospital look at the PET/CT images to verify this finding, but according to my first doc, I am now technically diagnosed as having Smoldering multiple myeloma.

My question now is just WHAT IS MY FORMAL CLASSIFICATION FOR RISK OF PROGRESSION? I have seen simple classifications which include standard/high as well as low/intermediate/high. How are these risk classifications arrived at? The reason I ask is I want to know if I should be considering any of the treatment options that are recently being put out for consideration for Smoldering multiple myeloma patients (most, if not all,of these articles suggesting early treatment seem to be restricted to "High Risk" Smoldering multiple myeloma patients). Or, am I at a risk level where my path should clearly be to just monitor the disease?

My key data includes:

No CRAB features
No abnormal chromosome or FISH results
11% plasma cells
1.6 g/dL SPEP paraprotein level (M-Spike)
0.05 K/L Light Chain Ratio

[Stan W.]

Re: Risk of progression classification - smoldering myeloma?

by Stan W. on Thu Dec 27, 2012 5:18 pm

I've found that one doctor's prognosis of high risk isn't another doctor's.
Anyway, you said you don't have any lesions to be concerned with. Does that mean you don't have any? Or, none that are bad enough to be concerned with?

[Multibilly]

Re: Risk of progression classification - smoldering myeloma?

by Multibilly on Thu Dec 27, 2012 6:30 pm

Stan W. wrote:
> I've found that one doctor's prognosis of high risk isn't another doctor's.
>
> Anyway, you said you don't have any lesions to be concerned with. Does that
> mean you don't have any? Or, none that are bad enough to be concerned with?
No lesions were found in my PET-CT scan. However, I did just get a copy of t the radiologist's report. It states that "No metabolically active lesions are seen that are suggestive of multiple myeloma...and no soft tissue masses to suggest plasmactyoma." But is also states that there are "lucencies in the femoral shaft bilaterally. These may represent deminerilization. Myelomatous involvement is not excluded..." After getting this report, I communicated with my second doc (who is a multiple myeloma specialist) this morning. He is going to reserve judgment until his team can review the actual PET-CT images later next week.

[Stan W.]

Re: Risk of progression classification - smoldering myeloma?

by Stan W. on Fri Dec 28, 2012 12:22 pm

I've had 2 skeletal surveys, a PET and CAT scan as well as a MRI. All came to the same conclusion in a language that I was able to understand. No lesions. The bone density test came up with osteopenia.
The two things I've been told to keep an eye on were my hemoglobin and creatinine numbers. I'm in a clinical trial with a human anti-body to strengthen bones. I get monthly infusions and my CBC is always pretty good. At least, this is what the doctor and nurse always tell me. In fact, my hemoglobin went from 12.8 to 13.4 this past month. Doctor was very happy with that.
They also told me to drink plenty of water to flush my kidneys.

[Ricardo]

Re: Risk of progression classification - smoldering myeloma?

by Ricardo on Fri Dec 28, 2012 11:19 pm

Hi Multibilly,

I believe there are currently two main approaches to classifying the "risk" of smoldering myeloma patients.

One is from the Mayo Clinic and the other is from the Spanish "PETHEMA" myeloma group.

This article describes the two approaches:

http://asheducationbook.hematologylibrary.org/content/2010/1/295.full

(Go to the section labeled "Risk of Progression to Multiple Myeloma".)

Both approaches define a set of criteria that create a scoring system. If none of the criteria apply to you, your score is zero. If one of the factors applies to you, your score is one. Etc.

The Mayo Clinic system has three criteria. The article described them as follows: "For SMM patients, the following features are considered to be adverse risk factors: ≥3 g/dL M-protein, an FLC ratio outside the reference range of 0.125 to 8, and ≥10% bone marrow plasma cells. At 5 years of follow-up, SMM patients with all three risk factors have, on average, a cumulative risk of multiple myeloma progression of 76% (median time-to-progression [TTP] was 1.9 years); for patients with two or one risk factors, the corresponding risk was 51% (median TTP, 5.1 years) and 25% (median TTP, 10 years), respectively."

The description of the PETHEMA criteria is a bit harder to understand. Or at least it was for me. There are two factors. The first is whether 95 percent or more of the bone marrow plasma cells are considered "aberrant" (not normal) based on "multiparametric flow cytometry of bone marrow aspirates." The second criteria is whether you have at least one immunoglobulin (Ig) level that is lower than the normal range; if you do, you have what is called "immunoparesis."

The Spanish group found that the risk of progression from smoldering to active myeloma at 5 years was 4 percent if you had none of the risk criteria, 46 percent if you have one of the critieria, and 72 percent if you have both criteria.

[Multibilly]

Re: Risk of progression classification - smoldering myeloma?

by Multibilly on Sat Dec 29, 2012 10:01 am

Ricardo wrote:
> Hi Multibilly,

>
> This article describes the two approaches:
>
> http://asheducationbook.hematologylibrary.org/content/2010/1/295.full
>

Many thanks Ricardo! This is a great, understandable article that any one diagnosed with Smoldering/Asymptomatic multiple myeloma or MGUS ought to read.

Stan W: Thanks. I will also be having some follow up discussions with another specialist next week on my latest test results, including, just what the "demineralization" in my femur shaft means. I'd like to know if I should be getting a bone density test or some other test to rule out myeloma involvement and whether I can or should be doing something to deal with the demineralizaiton in my femur.

[torimooney]

Re: Risk of progression classification - smoldering myeloma?

by torimooney on Sat Dec 29, 2012 12:58 pm

Dr. Berenson in LA reports a marker called BCMA (B cell maturation antigen) found in the blood.. This marker, he believes,may be an indicator of progression of multiple myeloma. The lower the marker, the lower the progression rate and the better chance of survival.. I know he included MGUS patients in this study, so perhaps this can give you another vehicle of determining risk of progesssion if oncologists are currently using it. . There is posted information about this and it can be found in e most recent ASH confernence reports. The research paper cwas published in the 2012 British Journal of Hematologiy titled "serum b-cell maturation antigen". It states at the end "further studies will reveal the stuctures on this circulating form of BCMA and whethter this protein will become an important prognnostic factor and additional marker with which to follow patients with multiple myeloma and other b-cell cisorders."

[Dianem]

Re: Risk of progression classification - smoldering myeloma?

by Dianem on Sat Dec 29, 2012 2:23 pm

Hi Multibilly - I find the understanding of MGUS, SMM, AMM, and multiple myeloma confusing along with the risk factors. When first diagnosed with MGUS last Dec I assumed the M spike was correlated to the amt of plasma cells. Wasn't clear to me how two people can have the same spike, but have different amt of plasma cells. When told my m spike was 1.5, I wasn't surprised when my oncologist recommended a BMA, 24 hour urine, scans, etc. which showed less than 5 percent plasma cells (Ig chromosome 7) with no CRAB criteria. I met another woman whose spike is much lower than mine, but has greater plasma cells. What is the variable involved in the secretion of para protein? And, do different chromosome abnormalities influence plasma cell percentage and para protein? Thanks Diane

[Multibilly]

Re: Risk of progression classification - smoldering myeloma?

by Multibilly on Sat Dec 29, 2012 7:06 pm

Dianem wrote:
> Hi Multibilly - I find the understanding of MGUS, SMM, AMM, and multiple
> myeloma confusing along with the risk factors. When first diagnosed with
> MGUS last Dec I assumed the M spike was correlated to the amt of plasma
> cells. Wasn't clear to me how two people can have the same spike, but have
> different amt of plasma cells. When told my m spike was 1.5, I wasn't
> surprised when my oncologist recommended a BMA, 24 hour urine, scans, etc.
> which showed less than 5 percent plasma cells (Ig chromosome 7) with no
> CRAB criteria. I met another woman whose spike is much lower than mine,
> but has greater plasma cells. What is the variable involved in the
> secretion of para protein? And, do different chromosome abnormalities
> influence plasma cell percentage and para protein? Thanks Diane

Perhaps others here can answer these questions. I can see how one would naturally assume that the concentration of abnormal plasma cells in one's bone marrow and the concentration of the paraproteins those abnormal plasma cells produce would tend to move in lockstep.

[kdboca]

Re: Risk of progression classification - smoldering myeloma?

by kdboca on Mon Apr 29, 2013 12:03 pm

I applied for the Novartis BHQ880 Anti-DKK1 Antibody trial for SMM high risk progression. I was rejected because my Beta-2 Microglobulin was 2.1 mg/dL (0.8 - 2.2). I'm IgG Kappa with 10% plasma involvement. I have some chromosomal abnormalities (trisomes) but the conclusion was that I was not a member of their high-risk pool. I can be happy with that.