Stopping Nubeqa and Orgovyx after 6 months

It’s not unusual for the PSA to rise after stopping ADT and then go back down again. Sounds like you got the best of all options.

Just keep track of your PSA you may go for years. You just never know..

@jeffmarc thanks Jeff. Seems like the motto for this disease might appropriately be “You just never know…”

It’s not unusual for the PSA to rise after stopping ADT and then go back down again. Sounds like you got the best of all options.

Just keep track of your PSA you may go for years. You just never know..

Update…well it’s been a little more than six months since stopping ADT. I received two opinions from respected oncologists (UCLA & MD Anderson). One suggested 6 more months, the other suggested a holiday to see how my PSA would respond. The doc who suggested the holiday maintained that the worse thing that would happen would be a gradual rise in PSA, and a return to ADT with a possible PSMA PET scan.
Here’s what happened to my PSA post ADT. It was undetectable when I stopped:
Month one: .07
Month two: .21
Month three: .21
Month four: .30 (uh oh)
Month five: .24 (hmm)
Month six: .18 (what’s this?!)
Testosterone is now back to 255.
I feel normal again. Libido is back; brain fog, irritability and hot flashes gone, energy back as are my red and white blood cells.
I’m pretty thrilled with this outcome. I have no idea how this will progress, but for now it looks positive.
If there’s one thing I’ve learned from all this, it’s that:
1. Everyone responds differently to treatment regardless of their diagnosis.
2. Competent oncology docs give varying opinions based on the same facts.
3. At the end of the day, you will make the final decision on your treatment protocol.
I will continue updating you all as my ADT-free months progress. I wish you all the best with your treatments!

@jeffmarc one more comment. In my case, you’ve previously advised against my stopping ADT after 6 months and you’ve supported longer duration ADT…12-18 months. I understand where you’re coming from and a longer duration might be justified for some. But given my experience, might it make sense for men to stop ADT after 6 months (I also had SBRT concurrently) to see if their PSA rise and then fall to an acceptable level for a sustained period? It doesn’t seem like there’s much to lose with this strategy but would like to hear your thoughts.

Thank you!
A little more background on my situation. I have been treated at UCLA Medical Center and am seeing a Genito Urinary oncologist there. I have also gotten a second opinion from a Genito Urinary oncologist at MD Anderson. Both docs well known and highly respected for their positive outcomes.
I think that their suggestion (both of them) that I might be best served by a holiday after 6 months of ADT is a real balancing act. I am meeting with them both in two weeks to really dive into my options and whether I might opt for this holiday. Testosterone deprivation is not a benign treatment and I think that more and more specialists realize that ADT can most certainly shorten life-expectancy in itself, and most definitely have a real negative effect on quality of life. I suffer from major brain fog, fatigue, irritability, anemia, significant joint pain, low white blood cell count, hot flashes that interfere with my ability to get quality sleep and a resting heart rate that has risen significantly. And yes, I ride my Peloton 3-4 times a week and do resistance training 2-3 times a week. I can’t imagine how I would be feeling if I did not do this.
Obviously, I consider all of these side effects better than dying from próstatas cancer, but I do think that forward thinking oncologists are now thinking that “holidays” from ADT, rather than just putting men on this toxic protocol for years and years on end, might be a more beneficial approach overall.
I am not sure how I will proceed but at least they are giving me this option. More specifically the option of taking a holiday and then monitoring my PSA closely to see if it rises above 0.1 and then possibly reapplying ADT or some form of radiation (based on PET Scan). I was hoping that someone else in this group had taken this path, but at this point I have not seen that response. Soooo, if I decide to take this ADT holiday, I will certainly let you all know how it goes. Good luck to you and keep fighting the good fight.

@glabelle

What's your Glison level? Was your prostate removed? Are there any metastases? Have you stopped ADT and stopped taking lutamide?

@glabelle
If somebody is a Gleason seven then Stopping ADT after six months is reasonable. If a Gleason eight even NCCN recommends 12 months of ADT.

Besides the Gleason score, you’ve also had metastasis in other spots. Were those spots zapped with SBRT when you had your radiation treatment, Or were they just controlled by ADT? That can make your cancer a lot more aggressive. What’s your doctor think about this? I’m pretty sure most genito urinary oncologists Would recommend 12 months of undetectable PSA before stopping. Has yours remained at < .04 since August?

If you want to get another opinion, come to the ancan.org Weekly advanced prostate cancer meeting next Week on Monday at 8 PM Eastern time. Go to the website and if you sign up, you’ll get a newsletter every week that has some really great stuff in it about the latest treatments in prostate cancer. The guys that run, the meeting have 15 years experience, helping people with their prostate cancer treatment. There’s almost always three or more doctors in the room. You need to install GoTo Meeting on your device, it works on any computer phone or tablet and it’s free. You don’t have to sign up to go to the meeting. You will get advice and information there that nobody else has given you.