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Stopping ADT Scared and Anxiety Update
I met with my urologist/surgeon this morning. We discussed both him and my oncologist recommending that I stop ADT (Orgovyx).
Prostectomy+ Seminal vesticals+7 lymph nodes 01/2022
Gleason 9, Decipher .99, 1 lymph node positive
Started ADT on Orgovyx 01/2023 prior to radiation
Pelvic radiation completed 05/2023
Still on Orgovyx-- 2 1/2 yrs total, 2 yrs since radiation
PSA has been undetectable at < 0.01 since radiation (2 years now). Last PET scan a year ago is clear.
I'm scared to do it, but both drs say it's the right thing to do. My PSA will be monitored very closely and if PSA starts to do back up, we'll do a PET if needed and treat it. I think I'm in good hands. If cancer recurrs, treatment will be early.
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Along with your Orgovyx did they also have you try adding abiraterone or one of the lutamide receptor inhibitors (enzalutamide, etc.)?
It sounds like you did really well on Orgovyx and your treatments, hope your psa stays undetectable!
Thanks,
Phil
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2 ReactionsAfter 28 months ADT I agreed with my MO , it’s the right thing to do. Checked Psa in May and will check Psa in July. So far my Psa reading is identical to yours< .01. Stopped ADT : January 2025. FYI only. We’re all on the same boat. Lol
You’ve been undetectable for two years.. Many different doctors would tell you to at least stop and get monthly blood tests for a few months to see if it comes back, It may not come back for a long time. I run into people with Gleason nine that just don’t have it come back for decades. You may be one of them unless you stop you will never know.
The thing is so many people stop taking ADT And find their PSA doesn’t rise for a long time, If at all. Lots of people in the user groups I belong to stop their drugs and restart them if it comes back.
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2 ReactionsWe've never discussed, not yet at least, adding anything with Orgovyx.
Is adding something like you mentioned a way to stay on Orgovyx?
I sure want to avoid CR and metastisis.
Yea, but what's the danger that the PSA starts rising and the cancer develops into something that's difficult to manage?
I guess the theory is if I'm having PSA taken very often (whatever that is), that if it starts to rise we'll be on top of it and catch anything as early as it could be?
No, I wasn’t trying to suggest a way to stay on Orgovyx. I asked because I started Orgovyx 2 1/2 months ago and tried adding abiraterone and prednisone but had bad side effects.
Now looking to maybe try something else for a second medicine but doctor said Orgovyx only is ok but second medicine can provide additional help. Good to see that you did well on Orgovyx.
Thanks,
Phil
Ive had tiredness, muscle aches, joint aches, sweating at night, etc. Not sure if all that is Orgovyx side effects or me just having no testosterone and getting old.
I am able to stay on Orgovyx but could not stay on the abiraterone and prednisone. With Orgovyx I have fatigue, headaches, some sweats, random other stuff it seems. But not totally intolerable considering the necessity.