[Beacon Staff]

Weekly Poll - Nonsecretory Myeloma

by Beacon Staff on Wed Mar 27, 2013 10:14 am

This week’s poll question is about nonsecretory (or non-secretory) myeloma, which is myeloma that does not secrete monoclonal (M) protein.

This means the myeloma cannot be diagnosed or tracked by the presence of M-protein in the blood and urine or immunofixation studies; however, it can be detected in the bone marrow or upon biopsy of bone lesions.

A blood test called the serum free light chain assay can be used to detect light chains in about 60 percent of patients who were previously considered to have nonsecretory myeloma. This means that these patients are not truly “nonsecretory”. However, most studies include this group of patients when they refer to patients with nonsecretory myeloma.

A few clarifications:

This poll is for anyone who has been diagnosed with multiple myeloma. If you are a caregiver or family member of a patient with myeloma, feel free to answer on their behalf.

For the purpose of this poll, feel free to count yourself as nonsecretory if you have myeloma that does not secrete M-protein (does not produce an M-spike when the myeloma is active), even if it secretes light chains (can be tracked using the serum free light chain assay).

As always, feel free to post additional thoughts, feedback, or comments in the space below. They can be very useful to other readers. For instance, how is your nonsecretory myeloma tracked?

For more information about nonsecretory myeloma, see the following Beacon article:
https://myelomabeacon.org/headline/2011/10/21/nonsecretory-multiple-myeloma/

[Gilbert]

Re: Weekly Poll - Nonsecretory Myeloma

by Gilbert on Thu Mar 28, 2013 7:30 am

Diagnosed1/15/10 it took about a week before doctors were able to determine the non-secretory part of me.Bone marrow biopsy and pet scan were the final statement.Many lesions and hot spots on vertebrae.initial pain was in hamstrings both legs
Radiation 2 weeks 5 months chemo Velcade Revlimid and Dex. Went to Hackensack hospital
Dr Vesole and Dr.Siegel advised 2 stem cell transplants after chemo treatments
Last transplant in 12/10/10. Every 3 months infusion of Zometa blood work check
Every 6 months Pet Scan to check for activity.
Fortunate in that 22million stem cells collected from my 61 year old body.7 million infused each transplant. At this time I still have not spoke with any other non - secretory would love to chat
Good luck to all stay physical keep pushing Many thanks to Dr Levitz at St Claire's in Denville
NJ for sending me to special people at Hackensack for treatment

[mothas]

Re: Weekly Poll - Nonsecretory Myeloma

by mothas on Thu Mar 28, 2013 8:17 am

I was diagnosed with solitary plasmacytoma in 2011, which was successfully treated but unfortunately developed into multiple myeloma around xmas time.

According to my specialist I am 'unusual', I have no Bence jones proteins, no sign of disease in light or heavy chains, no paraprotein levels, no indications of disease in bone marrow biopsy.

The only indication of disease comes in bone damage in my back which can be tracked with MRI scans. I am having an induction treatment of Velcade, Adriamycin and Dex leading to an Autologous stem cell transplant.

I would appreciate any insights from clinical practitioners or patients who have experienced something similar.

Tom