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Questions and discussion about smoldering myeloma (i.e., diagnosis, risk of progression, potential treatment, etc.)

Smoldering multiple myeloma or MGUS?

by jdh101 on Sun Jan 17, 2016 2:50 pm

The diagnosis from my bone marrow biopsy reads:

Plasma cell neoplasm/myeloma involving 10-15% of biopsy cellularity; 9.5 plasma cells on smear, 50% marrow cellularity; mildly hyper cellular for age. Plasma cells are scattered in number with pre­domi­nantly mature morphology, in few scattered micro clusters. Mitotic figures absent.

Trilineage hematopoiesis with full maturation. Lymphoid cells absent. Erythroid, myeloid dyspoieses absent. Mega­karyocytic are increased in number and adequate with micro­mono­lobated morphology.

CD138+ plasma cells involves 10-15% of marrow cellularity, kappa light chain restricted over lambda light chain. No granulomas. The bony trabecular is unremarkable; osteoblastic or osteoclastic activity absent. Fibrosis absent (Reticulin 0). Negative iron stores (PERL stain) Negative amyloid (onto red stain)


Here's my question.

I thought I was in MGUS because of the slide smear (9.5% plasma cells), but was told I have smoldering multiple myeloma. Is this a concrete evaluation or is it open to interpretation given the other number (10-15%)?

This is all Greek to me. I'm trying to learn.

Thank you in advance for any right you can shed on this.

jdh101
Name: jdh101
When were you/they diagnosed?: 1/15/2016
Age at diagnosis: 63

Re: Smoldering multiple myeloma or MGUS?

by Multibilly on Sun Jan 17, 2016 5:49 pm

Hi JDH,

Welcome to the forum!

When you have a disparity between the plasma cell count from the biopsy and aspirate, one goes with the higher figure (10-15%, in your case). The 2014 International Myeloma Working Group (IMWG) diagnostic criteria for determining bone marrow plasma cell percentage (BMPC) state that:

"Clonality should be established by showing κ/λ-light-chain restriction on flow cytometry, immunohistochemistry, or immunofluorescence. Bone marrow plasma cell percentage should preferably be estimated from a core biopsy specimen; in case of a disparity between the aspirate and core biopsy, the highest value should be used".

Do you know what your M-spike and kappa & lambda free light chain values are?

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

Re: Smoldering multiple myeloma or MGUS?

by jdh101 on Sun Jan 17, 2016 6:35 pm

Thank you so much for answering my post.

M-spike is 14.00
Free Kappa / Lambda Rat. 5.831 (a year ago it was 1.593)
Free Lambda Serum 1.72 (a year ago it was 4.54)
Free Kappa Serum 7.20 (a year ago it was 7.23)

I do have a question, is smoldering multiple myeloma considered a malignant form of multiple myeloma?

Thank you for your time,
Julie

jdh101
Name: jdh101
When were you/they diagnosed?: 1/15/2016
Age at diagnosis: 63

Re: Smoldering multiple myeloma or MGUS?

by Multibilly on Sun Jan 17, 2016 7:25 pm

That's a pretty low M-spike and free light chain (FLC) ratio, which is good news. With those levels (and assuming you have no CRAB conditions and/or worrisome cytogenetic results), my specialist might label your condition with his personal term "smoldering lite".

Medical literature is somewhat split when it comes to describing smoldering multiple myeloma as a "malignancy," and some doctors reserve the term "malignant" only for symptomatic multiple myeloma. I think Dr. Hoffman sums up this controversy rather well in this post:

https://myelomabeacon.org/forum/smoldering-myeloma-malignancy-t4494.html#p26360

By the way, if you haven't found a true multiple myeloma specialist yet (not simply a hematologist / oncologist who might have some other multiple myeloma patients), folks on this forum would generally say that should be your first order of business. If you let us know what city your are in, folks can make some recommendations as to where to find these specialists.

Lastly, it's always helpful if you include the units of measure and normal lab ranges whenever you post a lab value on the forum ;-)

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

Re: Smoldering multiple myeloma or MGUS?

by jdh101 on Sun Jan 17, 2016 7:57 pm

All good news, thank you.

All the best,
Julie

jdh101
Name: jdh101
When were you/they diagnosed?: 1/15/2016
Age at diagnosis: 63

Re: Smoldering multiple myeloma or MGUS?

by SlimMoe on Mon Jan 18, 2016 5:05 pm

So, if you are defined as having smoldering multiple myeloma, do you have cancer?

SlimMoe

Re: Smoldering multiple myeloma or MGUS?

by jdh101 on Mon Jan 18, 2016 6:03 pm

I'm trying to understand. If I look on Wikipedia (hardly a doctor!) it defines the condition as malignant, but I'm going to speak with my doctor. Is smoldering myeloma considered a malignant plasma cell neoplasm?

jdh101
Name: jdh101
When were you/they diagnosed?: 1/15/2016
Age at diagnosis: 63

Re: Smoldering multiple myeloma or MGUS?

by mrozdav on Mon Jan 18, 2016 7:17 pm

SlimMoe and jdh101: When I was smoldering I had the same question. My oncologist told me that, yes, indeed, I had cancer.

mrozdav

Re: Smoldering multiple myeloma or MGUS?

by Multibilly on Mon Jan 18, 2016 10:16 pm

All of the hematologists I have met with have always described smoldering myeloma as a "cancer". However, they do not consider MGUS to be "cancer".

The way I look at it, it really is just a question of semantics as to whether one calls smoldering myeloma a malignant plasma cell disorder/dyscrasia, cancer or some other term. The fact remains that smoldering myeloma is a precursor stage to symptomatic myeloma and giving it a designation such as "cancer" or "malignancy" will not alter how one monitors or potentially deals with it over time.

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

Re: Smoldering multiple myeloma or MGUS?

by jdh101 on Wed Jan 20, 2016 6:02 pm

I just spoke with my NP, who took me through the FISH and flow cytometry studies. I am await­ing the actual copy of the report, but what he said based is that my risk for progression according to those tests was intermediate.

My kappa lambda free light chain ratio went from 4.186 to 8.109 in less than a month. The standard range is 0.260-1.650. Insofar as numbers go, the ratio is not all that bad, but it just about doubled.

Having said that, my M-spike is holding at 0.93 g/dL. The M-spike percentage is 13.90.

Maybe because I just found out about all this I am hyper focused on possible outcomes, but I would like some sense of what I might anticipate in terms of possible progression to multiple myeloma.

Any thoughts?

Thank you

jdh101
Name: jdh101
When were you/they diagnosed?: 1/15/2016
Age at diagnosis: 63

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