I have "nonsecretory" myeloma and my myeloma hematologist/oncologist uses PET scans to help determine if I truly do need to change the mode of treatment being used as my disease doesn't blatently show up in the bloodwork done....even in the serum electrophoresis...and if it does show up there it is only minimally so she uses the PET to confirm if it is indeed "active" again and requires a change of tx.
I too have "nonsecretory" multiple myeloma. My doctor did not perform a PET scan, but rather relyed on standard blood test for the M Protein for follow up after a single Plasmacytoma of the spine. It was not until a skull Plasmacytoma became evident that my repeated request for a PET scan was granted. At that time, I was already in the severe situation of stage III Multiple Myeloma clearly shown lesions on the scan. If a PET scan was run earlier or regularly, it would have been caught before progression. Following ASCT, I must have now have routine Pet scans each 6 months to monitor any reoccurence. In my situation, Pet Scans are a must. My cancer did not ever show M Protein and always negative bone biopsy. Freelite testing for light chain was not considered earlier, but is part of my followup now. However PET scans are the best way to see Multiple Myeloma lesions and presence or progression of the disease. I am so greatful for Dr Durie's and the IMF's work on advocating for us for PET Scans.