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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 MrKhan on Wed Nov 08, 2017 9:33 am

My mother was diagnosed with myeloma. However, after doing some reasearch, I felt she her diagnosis was smoldering multiple myeloma. But her doctor started the treatment.

M protein 2.06
IgG kappa
55% plasma cells in bone marrow
No lytic bone lesions on X ray
MRI spine was normal
She is not having any CRAB symptoms.

The only negative point was 55% plasma cells in bone marrow. Her creatinine level is normal. CBC is within range except for fluctuating WBC of around 20000.

MrKhan

Re: Smoldering or active (symptomatic) multiple myeloma?

by Multibilly on Thu Nov 09, 2017 1:15 pm

Hi MrKhan,

Do you know if your mother had any adverse cytogenetics (altered chromosomes that indicate a potentially worse prognosis)? This would have been revealed on the FISH test that was most likely part of her bone marrow biopsy.

While my particular myeloma specialist would not normally initiate treatment unless someone was actually experiencing organ damage (i.e. meeting one or more of the CRAB criteria), there are many excellent and well-respected specialists that would initiate treatment based on meeting a "myeloma defining event" (MDE) without one necessarily also experiencing a CRAB event. At a 55% bone marrow plasma cell percentage, your mother was very close to experiencing an MDE. To better understand MDEs, see this article:

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014

I would also pay attention to the last sentence in Dr. Rajkumar's excellent commentary:

"Finally, no written criteria can substitute clinical judgment. In many cases, physicians will need to continue to use judgment in making decisions on which patients need immediate therapy, and in deciding when con­tinued observation will be in the patients’ best interests."

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 MrKhan on Fri Nov 10, 2017 10:29 am

Her FISH revealed high-risk myeloma t(4,14) translocation and monosomy 13.

Her initial M band was 2.06 after 2 weeks of bortezomib (Velcade). Her latest reading was 1.8.

MrKhan

Re: Smoldering or active (symptomatic) multiple myeloma?

by Multibilly on Sat Nov 11, 2017 10:56 am

Well, I think the fact that she has a high bone marrow plasma cell percentage coupled with high-risk cytogenetics is the likely reason that her doctor chose to initiate treatment. When to start treatment in the absence of CRAB symptoms is often a judgment call that is based on the experience and preferences of any given doctor.

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 MrKhan on Sat Nov 11, 2017 12:53 pm

Yes, the main reason for initiating her treatment early was most likely her poor health, weakness, and huge weight loss. Fingers crossed, I hope my mother will recover soon and get cured (hope­fully).

MrKhan


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