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Questions and discussion to help forum members determine if they may have multiple myeloma, smoldering multiple myeloma, or MGUS.

Smoldering or active (symptomatic) multiple myeloma?

by mtsmith on Thu Jan 19, 2017 12:37 pm

As I mentioned in this forum thread, I was originally diagnosed in February last year with a solitary plasmacytoma. It's possible I may now have either smoldering or active (symptomatic) multiple myeloma.

How quickly do blood levels/symptoms change?

Here are my blood results from September:

SERUM KAPPA FREE LIGHT CHAINS 18.20 mg/L
SERUM LAMBDA FREE LIGHT CHAINS 31.20 mg/L
SERUM KAPPA /LAMBDA RATIO 0.58

IGG 1087 mg/dL
IGA 223 mg/dL
IGM 168 mg/dL

TOTAL PROTEIN-TP 7.4 g/dL 6
ALBUMIN 4.1 g/dL
ALPHA 1 0.3 g/dL
ALPHA 2 0.9 g/dL
BETA 0.8 g/dL
GAMMA 1.2 g/dL

SPE INTERPRETATION Faint to moderate zone of restriction accompanied by polyclonal gamma.

MONOCLONAL PROTEIN, SERUM 37.0 mg/dL

IMMUNOFIXATION, SERUM Minute amount of IgG kappa monoclonal protein is present.

The CT scan at the end of December showed multiple lytic lesions. I am having new blood tests and meeting with the hematologist/oncologist next week.

I'm not sure whether this means I will begin treatment, or if they will wait and see.

mtsmith
Name: mtsmith
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb '16
Age at diagnosis: 56

Re: Smoldering or active (symptomatic) multiple myeloma

by mtsmith on Thu Jan 26, 2017 9:39 am

Well, getting more confused.

Met with physician yesterday. Blood work came in. Everything normal (free lambda chains still slightly above normal range - 27.8 mg/L - but down from September), except the monoclonal went up from 37 mg/dL to 94.8 mg/dL. I know that number is small compared to most that I have seen posted, but in the spirit of every one is a snowflake, what does it mean?

Upon extensive review of the December CT scan, it looks like there is no change in the size of the one very small lesion that had been identified on a different vertebrae when I had the CT scan done in February 2016 regarding the solitary plasmacytoma surgery. Doctor said he would have expected that to be much larger by now if I had active myeloma. The other lesions are so small they aren't sure they are really there.

Do I have smoldering multiple myeloma? Should I start some kind of treatment now because of the rise in the monoclonal (hit it now before it gets worse, which is what my wife thinks we should do)?

mtsmith
Name: mtsmith
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb '16
Age at diagnosis: 56

Re: Smoldering or active (symptomatic) multiple myeloma

by Multibilly on Thu Jan 26, 2017 1:06 pm

Did you ever have a bone marrow biopsy and do you know what your clonal bone marrow plasma cell percentage (BMPC) is? Since you have such a miniscule m-spike, you would need to largely rely on the BMPC % to make an exact diagnosis. I also wouldn't worry about a "jump" from 0.03 g/dL to 0.09 g/dL since you have such a small m-spike to begin with. Your measurements probably aren't even with the accuracy of what the SPEP test can actually reliably measure at such low levels.

If you have a osteolytic lesion and your clonal BMPC is > 10%, then your diagnosis would be multiple myeloma.

If you only have one osteolytic lesion and your clonal BMPC is < 10%, then your diagnosis would be a solitary plasmacytoma.

If you had no osteolytic lesions and your clonal BMPC was > 10%, then you would have a diagnosis of smoldering myeloma.

The statements above assume that you don't meet any of the other CRAB criteria or have a myeloma defining event.

CRAB and myeloma defining events are defined as follows:

CRAB:

*Hypercalcemia: serum calcium >0.25 mmol/L (>1mg/dL) higher than the upper limit of normal or >2.75 mmol/L (>11mg/dL)

*Renal insufficiency: creatinine clearance <40 mL per minute or serum creatinine >177µmol/L (>2mg/dL)

*Anemia: hemoglobin value of >20g/L below the lowest limit of normal, or a hemoglobin value <100g/L

*Bone lesions: one or more osteolytic lesion on skeletal radiography, CT, or PET/CT. If bone marrow has <10% clonal plasma cells, more than one bone lesion is required to distinguish from solitary plasmacytoma with minimal marrow involvement

MYELOMA DEFINING EVENTS:

*60% or greater clonal plasma cells on bone marrow examination

*Serum involved / uninvolved free light chain ratio of 100 or greater, provided the absolute level of the involved light chain is at least 100mg/L (a patient’s “involved” free light chain—either kappa or lambda—is the one that is above the normal reference range; the “uninvolved” free light chain is the one that is typically in, or below, the normal range)

*More than one focal lesion on MRI that is at least 5mm or greater in size.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Smoldering or active (symptomatic) multiple myeloma

by mtsmith on Thu Jan 26, 2017 1:44 pm

I had bone marrow biopsy when the tumor was removed last year. I remember seeing 10%.
The lesion is the only CRAB factor. Everything else in normal range.

I just got a call from my hematologist / oncologist. We are doing a PET scan.

I truly appreciate your input!

mtsmith
Name: mtsmith
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb '16
Age at diagnosis: 56

Re: Smoldering or active (symptomatic) multiple myeloma?

by mtsmith on Mon Feb 06, 2017 1:55 pm

Well it gets more interesting / confusing.

I just got a call from my specialist regarding the PET scan. The suspected lesions on my spine were not active, and the scan showed normal for the marrow. However, there were minute spots on two ribs, so we have decided that, although they are tiny, it is indeed multiple myeloma which we have caught very early (except for the T-11).

I am beginning a two weeks on, one week off cycle of Velcade, Revlimid, and dexamethasone (VRD) and will see what happens.

mtsmith
Name: mtsmith
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb '16
Age at diagnosis: 56


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