[TeamAndrade]

Nonsecretory multiple myeloma

by TeamAndrade on Mon Nov 24, 2014 6:48 pm

Hello,

My husband (40) was diagnosed with nonsecretory multiple myeloma. Is there anyone else out there with this?

We have been told it is very rare form. I would like to compare stories. He is also pretty young.

Thank you!

[Mister Dana]

Re: Nonsecretory multiple myeloma

by Mister Dana on Tue Nov 25, 2014 11:23 am

"Nonsecretory multiple myeloma & other novel things" (forum thread started July 17, 2014)

is a link to my story of being diagnosed and treated for nonsecretory multiple myeloma and some complications starting in December 2013.

"Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient)" (forum thread started July 26, 2014)

tells about my further treatment, an outpatient autologous (self-donated) stem cell transplant, in the summer of 2014.

Having the nonsecretory version is rare, about three percent of all cases, I think. The treatments seem to be the same as for secretory multiple myeloma.

Dana

[Anonymous]

Re: Nonsecretory multiple myeloma

by Anonymous on Wed Nov 26, 2014 12:08 am

My mom was diagnosed with nonsecretory multiple myeloma a few months ago and it is harder to track. She has to have bone marrow biopsies to measure disease. But I don't think it effects treatment or results.

Good luck!

[Tom184]

Re: Nonsecretory multiple myeloma

by Tom184 on Wed Nov 26, 2014 11:25 am

I was diagnosed with nonsecretory myeloma in February 2011. I had a very good response in particular to Revlimid. I had an autologous stem cell transplant in August 2011. I have been on Revlimid maintenance since the transplant.

As far as can be told (that is the tricky part with being nonsecretory), I have been in a complete remission for more than three years. My oncologist feels he can monitor, with a reasonable degree of accuracy, how I am doing by keeping an eye on whether or not I become anemic again and following my light chain counts. (Beats having lots of bone marrow biopsies!)

Bottom line: Other than missing out on the simplicity of knowing your status by measuring the M-spike, there does not seem to be much, or any significant, difference.

The best of luck to you and your husband.

Tom

[Mister Dana]

Re: Nonsecretory multiple myeloma

by Mister Dana on Fri Nov 28, 2014 2:40 am

A healthy person's blood contains low levels of immunoglobulins (heavy proteins) of various weights, and a mixture of kappa and lambda light chains of paraprotein. A person with multiple myeloma has a big clone of abnormal plasma cells busily making one of the Ig's and an excess of one of the light chains. If these are secreted into the bloodstream, the Ig made by the cancer cells will show up as the "M-spike" on a protein electrophoresis graph, and the light chains made by the cancer will cause an unusually high or low ratio of kappa to lambda free light chains.

So, with regular secretory multiple myeloma, a doctor can monitor whether the disease is present or absent, coming or going, by tracking these chemical secretions in the blood and urine.

With nonsecretory multiple myeloma (about 3 percent of multiple myeloma cases), the bad cells don't reveal themselves in this way. I get those blood tests once in a while, but they don't tell us much. Instead, my doctor monitors me by (a) having a bone marrow core taken out, viewed microscopically by a pathologist and analyzed for cancer, and (b) ordering a PET scan image on which active lesions would show up as "hot spots".

The advantage of being nonsecretory is that I don't have M-protein gumming up my blood, nor free light chains damaging my kidneys. Otherwise, all the rest of what I read in the forum is of interest.