Going off ADT after 3 years

Hi @shelby29 . I was on abiraterone, prednisone and Orgovyx (instead of Eligard) for 17 months. I'm 60. I was given a holiday off of them for 9 months (as they were taking a toll on my body), and should have stepped off of the prednisone because I had 3 months of worse aches than on ADT and needed adrenal stimulation to get my cortisol levels back to normal. Anyway, I understand that Eligard will take a little longer to wear off and for you to start feeling more your old self again. Yes, the time off was nice for me. Nice to see my muscles come back and remember what libido was again. But ED didn't improve much if at all and after 9 months my PSA was back up (from zero), so now I'm on Xtandi. I guess what I'm saying is that it's nice to get off of the meds, but it will be a temporary thing. Your PSA will rise again, you then will/should be scanned (PSMA PET-CT) and if there are no lesions found, you'll be back on a hormone treatment. At least that's how it has worked for me. Good luck!

@shelby29 I guess there's also the chance that your radiation killed the cancer, right? Going off of ADT would help you to know if it worked, I think. In my case, my radiation didn't -- which I found by going off of ADT. So that was good to find out (because who wants to be on ADT if they don't need to) but disappointing, of course, too.

@stuartmpls Thank you do much for your reply...good to know.

@stuartmpls When your cancer came back, was it still castrate-sensitive? That's my fear: I go off ADT, but then my cancer recurs in a year or two, and now it's castrate-resistant.

Well..

You will find different schools of thought about intermittent vs continuous systemic therapy.

The latter tends to revolve around "if it's working, why change things up" and "why risk it, letting your PCa get out of control..."

There are many on this forum who have been on systemic therapy for years, living their lives, albeit with the side effects.

There are others who advocate for intermittent systemic therapy. I have seen some data that points to a "slight" difference in overall survival.

There are other arguments for IADT, pushing back castrate resistance, financial toxicity, quality of life...

Since we don't know when castrate resistance hits, nor do we know of, how fast, T recovers and when PCa returns in that process, well, trying to make that decision based on hard data is nigh impossible.

I've done it twice. Both times we have based it on two data points:

PSA dropping to undetectable in the first three to six months.
AND
PSA staying undetectable throughout the duration of treatment.

The first "vacation lasted almost five years. The 2nd one is at 18 months, next labs in January. In both cases my T recovered quickly by three and six months, see attached clinical history. So, if T is the fuel for fire, why...

In the EMBARK trial, guys who achieved undetectable by month seven were able to come off treatment and then enter "active monitoring" with criteria as to when to go back on treatment.

So, discuss with your medical team. If the joint decision is to come off treatment then have criteria in place that triggers a decision to go back on treatment.

Ours is:

Three or more PSA tests spaced three months apart showing a continuous increase.
AND
PSA between .5-1.0

The former avoids reacting to single results. The latter gives us a reasonable statistical probability of locating the recurrence.

Those criteria were met in April 2024 and we acted on them.

This also opens up new treatment possibilities as medical researchers do their thing while you are "vacationing."

Kevin

I was on Eligard and Zytiga for 2 years and on a holiday for the past year. Testosterone was very low for months 2 and 4 but by month 6 it was 300 and now in month 12 it is 500 and most things are back to normal. Unfortunately my PSA went from < 0.1 to 0.1 in the last test, so we are now going with the ultrasensitive. I am 54

@northoftheborder No, when I went back on therapy with Xtandi, my PSA (which elevated from 0 to 1.5 in the third 3- month period of ADT holiday) went back to zero and stayed there — 8 months now. One thing to note: one urologist told me that some percentage of people never experience castration resistance. They live to old age doing various hormone treatments and die some other way. I worried about that castration resistance as well, but the general idea of intermittent hormone therapy is to let your cancer wake up rather than to force it to mutate to survive, as I understand it.

@stuartmpls
Xtandi side effects can be a real problem for some people. Nubeqa (Darolutamide) Works very similar to Xtandi and if you are having problems with it, ask your doctor to see if you can switch. Nubeqa Doesn’t pass the blood brain barrier like Xtandi so it causes less brain fog.

I know a lot of people on Nubeqa as their main treatment, Many in their late 70s and 80s. They are very pleased with how Few side effects there are and the fact that it works with testosterone.

Good luck. Quality of life is as important as living. If you stop Eliguard, the PSA could start to rise again indicating the cancer is gaining strength at which time you can consider additional treatments. It could take months or years. Do not fret, I hope you can gain all your body hair back. LOL!

I was on Lupron and Zytiga (Abiraterone) for three years. Gleason 3+5. I have been off for one year and my PSA has remained undetectable for four years now.