Urologist said I could stop Orgovyx. Your thoughts?

Mr. Marchi,
Thanks for your reply. I've discussed many "next-step" treatments and, of course, discussed what you mentioned. Frst, my apologies for being blunt, but please do not tell me what I "should be on". No body's cancer type, progression, body chemistry is the same nor reacts to any given treatment the same.

Metastatic...???...hmmm...'spreads to bone?...to lymph nodes?...to the Prostate itself or other organ tissue???
Very much part of an important diagnosis and treatment options...And this, from the NIH:
"No, Androgen Receptor Pathway Inhibitor (ARPI) treatment—such as abiraterone, enzalutamide, apalutamide, or darolutamide—does not guarantee a lifelong absence of castration resistance. While ARPIs significantly delay progression and extend survival in metastatic castration-sensitive prostate cancer (mCSPC), many patients eventually develop resistance..."

It has long been debated why in some males the body becomes resistant to ADT, but statistically, most will succumb...If you are one of the lucky few that this does not happen, then Bless you!!!

Please try not to speak in such definitive terms...But I hope you continue to keep this pesky disease at bay.
Blessings

@deccakid
You mentioned having to stop and restart ADT because PSA keeps coming back. That’s no fun.

An ARPI like Darolutamide Would allow you to stay away from ADT so you don’t have the side effects, and it doesn’t have much in the way of side effects. Very few people say they Notice any including me. I even stopped ADT for eight months While on Daro And my PSA didn’t rise at all.

I’m not saying you have to do it. I was just bringing up the fact that an ARPI can replace ADT since it prevents testosterone from allowing the cancer to grow using testosterone. .If you switched to one, it would allow you to eliminate the ADT side effects and probably still have your cancer under control.

I know a lot of people on Darolutamide alone, Some people on the other lutamides, while they have very few side effects and it works for them.

I was just bringing this up as something to think about. I wish I could quit ADT But my genetic issue sort of requires it.

Been off Orgovyx now for a week after being on it for 20 months. Last test results a month ago were PSA less than 0.04 and testosterone less than 1. Hoping for a good future.

@johnny8924 Good luck. With longer ADT and higher age testosterone recovery is extended so even from Orgovyx it can be 3 months or longer. You will probably have a PSA bounce when your testosterone recovers since you are 1 year out from IMRT and cancer cells take up to 2 years to die.

@johnny8924
Here’s some information on how quickly your testosterone could come back

In the HERO study, relugolix demonstrated sustained testosterone suppression superior to that of leuprolide acetate (97% vs 89%; difference 7.9% [95% confidence interval, 4.1–12%; p < 0.001]).

Men (N = 934) were randomized (2:1) to receive relugolix 120 mg orally daily or leuprolide acetate injections every 12 wk for 48 wk.

Overall, 74 of the 137 men in the relugolix cohort recovered to testosterone >280 ng/dl, with a median time to recovery of 86.0 d (95% CI, 65.0–92.0), versus two of the 47 men in the leuprolide cohort, with a median time to recovery of 112.0 d
https://www.sciencedirect.com/science/article/pii/S2588931123002900

Been off Orgovyx for a week. Is it overly optimistic to hope for a total reduction of the Orgovyx side effects I've experienced after 20 months of daily dosages ( loss of libido, ED, brain fog, genitalia shrinkage) while also hoping for an increase in testosterone and a continuing concomitant PSA level of .04 or less?

@johnny8924 Yes as your testosterone returns. Night erections told me my testosterone was coming back to normal, also libido. As far as shrinkage it will stop but recovery can be slow.

PSA will probably increase since you still have a prostate. Typical is < 0.5 then decreasing over time (lower is better). It should not be increasing after the initial bounce from the ADT removal. The PSA results should be monitored by your RO and/or urologist to make sure the cancer is not coming back.