[Laura]

Nonsecretory multiple myeloma - how often to get tests?

by Laura on Sat Nov 16, 2013 11:16 am

Hello,

I was diagnosed with nonsecretory multiple myeloma in May of 2012.

I am concerned if my oncologist is doing whatever it needs to be done to monitor the disease. Is it under control? Is it progressing?

I underwent the chemo protocol and a stem cell transplant as well. I was declared in remission about three months ago.

Now, my oncologist placed me on a three month follow up visits. Good news? i am concerned if I should push for more periodic tests since my disease cannot be detected with blood or urine tests.

Any comments/advice?

[StandingTall]

Re: Nonsecretory multiple myeloma - how often to get tests?

by StandingTall on Sat Nov 16, 2013 1:54 pm

If it would help you have piece of mind and sleep better at night, then it may benefit you to ask for it. On the other hand, I think three month periods seem frequent enough. Still, I am sure the feeling of having this hang over your head feels unendurable...waiting for the axe to drop...something out of your hands. Just please try to enjoy the good things...each day as it comes...as I am no professional or holistic guru, but who knows what makes multiple myeloma switch on, but I am sure stress and worry doesn't help...so please be sure to take care of yourself. But if you can't think straight because of this anxiety, then yeah, it is perfectly okay to ask your doctor to work with you on this!

[Multibilly]

Re: Nonsecretory multiple myeloma - how often to get tests?

by Multibilly on Sat Nov 16, 2013 4:18 pm

QUOTE: Hello,
...i am concerned if I should push for more periodic tests since my disease cannot be detected with blood or urine tests. Any comments/advice? END QUOTE

Response: Hey Laura: So, you also don't have enough FLCs in your blood to get a measure on the status of the disease via just a Freeliste assay? I was just thinking that might be an intermediate option you could do between BMBs, depending on your serum FLC levels? .

[terryl1]

Re: Nonsecretory multiple myeloma - how often to get tests?

by terryl1 on Sat Nov 16, 2013 5:04 pm

For true non-secretors, I believe they also track it by imaging tests like the MRI and PET CT. That could be an option although the PET CT uses quite a bit of radioactivity.

[Multibilly]

Re: Nonsecretory multiple myeloma - how often to get tests?

by Multibilly on Sat Nov 16, 2013 7:35 pm

I was just thinking of something quick and easy between 3 month visits. PET/CTs are indeed very radiation intensive and should therefore only be used sparingly. They also are very time consuming and pricey (my insurance's adjusted rate for a whole body PET/CT is $2,300....if you have a 10% copay for imaging services, that is $230). Whereas, a SFLC assay is something like $100 ($10 out of pocket for a 10% copay). The question is indeed whether an SFLC is an option or not in this case?

See this article for some addtl insights from a couple of the great docs on this site.

https://myelomabeacon.org/forum/tracking-nonsecretory-multiple-myeloma-response-to-therapy-t155.html

[Dr. Peter Voorhees]

Re: Nonsecretory multiple myeloma - how often to get tests?

by Dr. Peter Voorhees on Sun Nov 17, 2013 9:16 am

Dear Laura,

Are you on maintenance therapy?

It would be good to know if your serum free light chain testing was abnormal at diagnosis or not. If abnormal, this could be used to help monitor your disease status. It would also be good to know if the beta2-microglobulin was elevated at diagnosis. This could be another way to monitor the disease in a non-invasive, radiation free way. If you have truly non-secretory disease, you will need to be followed with periodic bone marrow biopsies and PET-CT. The frequency of these tests can be discussed with your oncologist. Issues such as experience with previous bone marrow biopsies, co-pays for imaging, etc may wind up figuring in to the equation. If there is concern about the frequency of monitoring, you should bring that up with your oncologist. You could certainly have standard labs done in between visits to see if you are developing worsening anemia, a high calcium level, kidney problems, etc.

It is great to hear that you are in remission. Good luck and let us know if you have any other questions.

Thanks!

Pete V.