Tom et al,
I had a prostatectomy 9/2024 , Gleason 9, etc. A CT scan followed with lung nodules "only", too small to biopsy.
Two months later CT showed small nodule growth and I added Nubeqa to Lupron injections. Nodules "disappeared" in a short time and all scans including PSMA Pet, showed all "clear" status with no further spread as of today...so two years hormone therapy and voila... still undetectable PSA and testosterone, CT clear. Oncologists confirm it was spread distantly from prostate( unusual but not too uncommon) and not simply "lung cancer" given it disappeared with therapy. That would not have happened otherwise.
Caveat: I have consulted with two excellent oncologists who recommended I begin "intermittent therapy" or holiday, beginning 9/18/26, given strong response to therapy over two years. However, at recommendation of one oncologists I then had a "Caris" test for gene/DNA and found I have 100% Pten loss which "opens the gates" for future cancer spread especially with original aggressive cancer diagnosis. Holiday ? Not so sure without some "gate blocking". I am currently taking Nubeqa 300mg twice daily - off label so don't know if it will help except to keep testosterone low. Hot flashes continue and breast enlargement occurs when Nubeqa alone is taken as a monotherapy.
Question: Should I go back on doublet with Orgovyx and Nubeqa because it worked well, stay the course with monthly PSA and scans with or without Nubeqa? One oncologist said if it was him he'd stop "holiday" go back on doublet therapy, other oncologist said do monthly PSA and scan every few months. Let my body recover from hot flashes, fatigue etc.
It's a dilemma due to issues of Cardio and type 2 diabetes because if there's a recurrence of mets I can't take Truqap plus abiraterone and prednisone, new drug triple "regimen" , as of 7/2026, for Pten loss. Side effects would be daunting - comorbidity more possible.
What to do? Recommendations anyone? Sorry for the epistle! Best to you, Tom and others, who may be on this similar journey.
Richard