Stopping ADT Scared and Anxiety Update

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

After 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.

We'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.

Interesting, you say you are not experiencing any side effects from the Orgovyx yet then describe the very side effects of low or no testosterone...

My experience, keep in mind this is a heterogeneous not homogeneous disease so may not be yours.

I've done ADT twice, 1st, Lupron for 18 months starting in January 2017 as part of triplet therapy. The 2nd time, Orgovyx for 12 months in conjunction with SBRT in April 2023.

I went 4+ years the first time before my PSA began to show activity. Currently at 14+ months the 2nd time, holding steady at .03.

Both times I generally did labs and consults every three months. We had decision criteria in place about when to decide if it was necessary to go back on treatment:

Three or more consecutive PSA increases and..
PSA between .5-1.0

The latter was to provide a statistically reasonable chance a PSMA PET would show where the recurrence was and thus inform our treatment decision.

In both cases, T began to recover in three months. The side effects diminished and I felt "better."

I am high risk, GS8, GG4, PSADT and PSAV very rapid, short time to BCR after surgery. Some would say I should never come off ADT. I am not one of those some and my medical team supports me.

Why? Because they know I will actively monitor and go back on treatment when it is necessary.

There is always a dilemma in our medical decisions about treatment, too soon, too late, too much, too little, too short, too long, which ADT, which ARI, which radiation...

It's nice to have choices then we start getting nervous, am I making the right choice...? I say this, you likely are making a good choice, combining your understanding, preferences and the training, education, experience and advice of your medical team. I am not sure there is a "right" choice." You can drive yourself into a worrisome state trying to determine the right choice, that can cause stress and stress can cause inflammation and that's a cycle that can make things worse.

You ask "what's the danger...?" I say as a layman, minimal if you are actively monitoring when you and your medical team decide to come off treatment based on the clinical data.

If you are comfortable with your medical team, listen, consider what they have to say.

Finally, keep in mind that given the rate of change in treatment possibilities brought on by medical research, if you come off and enjoy a "lengthy" PFS period, you may have "new and better" choices, if, when, that time comes!

An example - https://www.urotoday.com/video-lectures/advanced-prostate-cancer/video/mediaitem/4908-psma-dc-trial-lutetium-sbrt-to-delay-adt-in-oligometastatic-prostate-cancer-oliver-sartor.html?utm_source=newsletter_14320&utm_medium=email&utm_campaign=prostate-cancer-daily

Kevin

PCF.org webinar from May 2025 Hormone Therapy: When, why is posted on site and may be informative.
There are a number of "lutamides" that your MD might add to your ADT.
Best wishes.