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Re: Relapse 9 months after transplant - now nonsecretory

by Ian on Wed Sep 30, 2015 5:48 am

Hi Tracy,

Thanks for mentioning oligosecretory myeloma. I thought about adding it into the mix, but I held back, mainly because I didn't want to overcomplicate things.

Also, I have the impression that, as the free light chain assay is used more and more to monitor multiple myeloma patients, fewer myeloma specialists are using the "oligosecretory" classi­fi­cation. Instead, patients are mainly being classified into the three broad categories I described earlier in this thread -- "regular" (both an M-spike and elevated free light chains present), "light chain only", and "nonsecretory".

I agree, though, that some (many?) of the patients who are being told that they are non­secretory are probably oligosecretory instead.

The Beacon article you mentioned about oligosecretory disease has an interesting discussion that reflects some of what I wrote earlier in the thread about how multiple myeloma has a tendency to become more nonsecretory as it progresses:
Dr. Rajkumar believes that “as the disease progresses, the myeloma cells become more genetically abnormal and lose the ability to synthesize and/or secrete mono­clonal proteins,” causing oligosecretory disease.

However, Dr. Rachid Baz from the Moffitt Cancer Center, who was not involved with the study, is not com­pletely convinced that oligosecretory disease becomes more prevalent in advanced stages of myeloma.

He explained that spikes in M-protein levels are high in newly diagnosed patients, but low after treatment, and that retreatment often begins before M-protein levels are measurable again.

“In this situation, the patient would be labeled as having oligosecretory disease while, in fact, if that patient had waited longer to start therapy, his/her M-spike may have reached measurable levels,” he said.

Ian

Re: Relapse 9 months after transplant - now nonsecretory

by mikeb on Wed Sep 30, 2015 11:34 am

TracyJ,

Thanks a lot for your answer to my question. That helped me understand things better.

No doubt, your case is on the fringes of current medical understanding! And way past the fringes of my understanding. ;)

Your hypothesis about your having polyclonal plasma cell disease initially seems reasonable to me. I sure don't have any better guess about what could have happened.

And your point about the difficulty of measuring disease progression for a true nonsecretory myeloma patient is a very good one. There are a couple of long-time (18 and 20+ years!) myeloma patients in my (Philadelphia) support group who are nonsecretory, and they both deal with the challenges you described.

Also, very interesting discussion about heavy-chain ("regular") vs. light-chain vs. oligosecretory vs. nonsecretory forms of multiple myeloma. This certainly is a complex disease. Right now I have the image of a multi-headed hydra in my (single) head.

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Relapse 9 months after transplant - now nonsecretory

by JinMingDao on Wed Dec 02, 2015 8:23 am

Thank you for your well wishes, Mikeb. I am happy to report that most of my pain has subsided, and that I am in my second month of the three month CyBorD regimen. I feel well enough to drive short distances alone, which is such a confidence booster. I thank God for the little things.

As long as I don't stay out too long (I get sleepy quickly), I can do it. At the moment, my doc plans to finish this up mid-January, and start me on a maintenance regimen. I should be able to get back to work by March, hopefully. Fingers crossed! Merry Christmas and/or Happy Holidays to all!

JinMingDao
Name: Kim
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2014
Age at diagnosis: 46

Re: Relapse 9 months after transplant - now nonsecretory

by mikeb on Fri Dec 04, 2015 2:05 pm

Hi Kim (JinMingDao),

Glad to hear that your pain is better and that you are into the 2nd month of your CyBorD treatment. I hope things continue to go well for you.

Please keep us posted on how things go for you.

And best wishes to you for a Merry Christmas and Happy Holidays!

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

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