“…truly non-secretory myeloma to less than 3% of all newly diagnosed myeloma patients. With regard to prognosis, it appears from most series that patients with non-secretory myeloma have a prognosis similar to or better than that of patients with secretory myeloma..”
Hi David- I am wondering about monitoring my MM. I am non secretory. I had a BMB to confirm this then underwent chemo for a short period, could not tolerate well. Then off for an autologous stem cell transplant (ASCT).
That was over one year ago and I have been cruising along quite well since. I am being monitored by my free light chain blood work.
I am grateful no more BMB but I am concerned as the original diagnosis was stage 1, only because I didn’t have the normal markers in my blood work that the criteria said I should have (missing because I am non secretory).
I have a hemotologist who has never worked with non secretory so I wonder now if his diagnosis of stage 1 was correct. My malignant cells in the original BMB were 80-90%. I fractured over 9 vertebrae and multiple ribs and one shoulder prior to treatment.
I’m going to sign up for your course. Any info you can shed on the non secretory would be appreciated. My dad passed away from MM a few years ago so I believe there must be a genetic link. I am now 62 years old.
I too was non-secretory when I was first diagnosed. I think we non-secretors are a whopping 1-2% of total MM diagnoses in the US annually. For a rare blood cancer that totals less than 2% of all annual cancer diagnoses in the US, I’d say we are the rare of the rare.
I mention these stats in order to make the case that yes, you should find and work with a MM specialist. I’m sure your hematologist is knowledgable, well-educated, etc. but there is nothing like experience when it comes to treating us for the long term.
Your local oncologist is important for routine cancer care- diagnostic testing, chemotherapy administration, etc.
Further, like you, I question a diagnosis of stage 1 considering your bone involvement combined with your 80-90% monoclonal proteins in your bone marrow when you had a BMB.
Okay, that’s the bad news. The good news is that is sounds like your initial treatment of induction therapy and an autologous stem cell transplant put you into remission. In other words, even if your MM was more advanced at diagnosis, your therapy worked as it should.
I often advise early stage MM patients to undergo low-dose therapy. Standard-of-care for MM, I believe, is designed for more advanced MM patients- say stage 2 or 3.
When you say “I have been cruising along quite well since,” I take you to mean that you have no side effects and your bones have healed. This is great.
Going forward, I encourage you to have regular bone marrow biopsies. I’m sure you don’t like this procedure, none of us do, but I know of no other diagnostic tool that can reliably measure your monoclonal proteins.
You didn’t mention any type of imaging study (MRI, PET-CT, whole body x-ray). Considering your original bone involvement, I would get a regular scan of some type in order to keep an eye on any and all bone involvement. Please consider a PET scan. My experience is that PET scans do the best job of detecting early bone activity for MMers. This is the kind of thing that a MM specialist would know.
I too, dealt with extensive bone involvement. I relied almost exclusively on x-rays, PET and MRI’s.
Finally, let me plug non-toxic, non-conventional MM therapies like anti-angiogenic foods, supplements as well as complimentary therapies like exercise and whole-body hyperthermia (sauna).
The study linked below cites non-secretory MM have a longer overall survival than conventional MM patients. I am biased of course but I believe that non-conventional therapies can improve our overall survival even more.
Let me know if you have any questions.
MM Cancer Coach
“Overall survival improved in both secretory and nonsecretory myeloma patients diagnosed between 2001 and 2012 compared to the earlier period. However, the improvement in survival was greater in patients with nonsecretory multiple myeloma. The median overall survival for nonsecretory patients diagnosed between 2001 and 2012 was 8.3 years compared to 5.4 years for secretory patients diagnosed in the same time period…”
“Newer methods of assessment for plasma cell disorders, such as the widely used serum free light chain assay, have reduced the number of patients with truly non-secretory myeloma to less than 3% of all newly diagnosed myeloma patients. With regard to prognosis, it appears from most series that patients with non-secretory myeloma have a prognosis similar to or better than that of patients with secretory myeloma…”
“Conclusion and future directions-
Several lines of evidence point to a genetic predisposition to MM and other plasma cell dyscrasias. Until recent years, only case-control studies and reports of occasional high risk families supported this view.
More recently, identification of hyperphosphorylated paratarg proteins and identification of putative susceptibility loci by GWASs have provided more firm evidence indicating inherited predisposition to MM and related disorders. The discovery of pP-7 as a frequent target of paraproteins in MM offers a potential link between the old concept of chronic antigenic stimulation as a potential cause of MM, and observations of familial predisposition as well as racial disparities in the incidence of MM.
GWASs have to date identified several susceptibility potential regions of interest in MM and further molecular studies aimed at identification of specific genes of interest are ongoing. Although these discoveries are provocative, further work will be required to identify the genes and mechanisms underlying inherited susceptibility to MM, and these studies will be facilitated by the use of additional resources such as family registries and large-scale consortia.”