Stopping ADT

Diagnosed with de-novo stage 4 (metastatic to my spine) in 2021. ADT+Apalutamide have successfully kept my PSA undetectable since then.

Well, it is "possible..."

The question is, what are the risks in doing so?

The answer, not sure anyone knows.

There is also the question of how long it would take for him to recover (if) his testosterone to where he begins to "feel better" vice "when (if, but when is more likely given his GS) his PSA would begin to rise, Recovery of T is a function of things like time on ADT, baseline Testosterone, which agent he is on, say Orgovyx vs Zoladex, age...I mean, if he came off and it took a year plus for T to begin recovery to say 100+ but the PSA began rising before that, well, was anything gained?

Discuss with his medical team, if everyone's in agreement, then have a plan to actively monitor, labs and consults, perhaps PSMA imaging though issues with insurance and detection at low PSA values may come into play, and decision criteria about what constitutes clinical data to resume treatment -say three or more consecutive PSA increases, at what PSA would he go back on treatment.

That GS plus your mentioning of metastases to the bones generally from my experience over these 11+ years indicates continuous versus intermittent treatment, there is other clinical data - PSA doubling time and PSA velocity, if he's had surgery and BCR, what was the time between the two.... that factors into a decision.

I am high risk, GS 8, GG 4, 18 months to BCR, PSADT < 3 months...yet, for whatever reason my PCA has not spread to bones or organs, so my medical team and I have been able to make decisions about intermittent treatment.

Last comment, if the decision is to come off treatment, is he an active person? My T has recovered rapidly both times I've come off ADT, why, who knows, but I have seen literature that talks about the possibility of exercise plays in Tv recovery, just a thought.

Kevin

Yes, that makes sense and thank you for taking the time to reply.

This forum is priceless - all the wisdom and experience helps all of us on this journey; from the unknown and associated questioning to the angst of the details.

I take turkey tail mushroom tea daily in the evening. I have been off of ADT for 3 1/2 years now and my psa is still dropping (psa went up to 0.15 after quitting ADT). Mushrooms are part of my dinner at least once per week, usually white button mushrooms, but also some locally foraged species. When I was diagnosed my psa was 54.0 , Gleason 8, with local pelvic metastasis.

Dpfbanks, ‘Adenocarcinoma’ IS informative; it is a particular type of PCa arising from glandular cells - not intraductal, neuroendocrine or urothelial. It’s most probably the same type he originally had.
Actually, this sounds like good news if he survived the first bout for 17 yrs; hopefully it has not undergone too many changes in that time frame.
Phil

@heavyphil - all your comments are so appreciated. Yes, the original path from 2008 was ‘acinar adenocarcinoma’ Gleason 7 and we thought the same: that it must be a slow boat. But it has taken an unusual route to the lung only with a current PSA 0.36 from post RARP Nader of < 0.01. So, the docetaxel + carboplatin seems out of line and why I keep questioning … the CCOE must feel the lung is a place not to mess with, even a slow boat can get a new engine. That’s the only way I can understand the aggressive protocol because it’s not standard. I believe they think there is a chance to knock it out…if that ever happens. Again, many thanks. It’s only chemo week 1 and it feels like unknown dread is around the corner.

I like your reply. I m gonna check out where I can get turkey tail stuff. Your data is great. Thank you guy!