ADT and Castrate Resistance

Posted by ga73ds @ga73ds, Jul 7 2:03pm

Diagnosed Nov 2021. Gleason 9, Decipher .99, stage 4a (spread to seminal vesticles and 1 of 12 lymph nodes tested). I had prostatectomy in January 2022. There was some positive margin. I started ADT (Orgovyx) a year later in January 2023, a few months prior to pelvic radiation in March-May 2023.

So, I've been on ADT (Orgovyx) for 2 1/2 years total-- 2 years since radiation. Since radiation and while on ADT, for over 2 years now, my PSA has remained undetectable at < 0.01. I am very pleased.

My question-- is castrate resistance more likely the longer you stay on ADT? If CR develops, I read that the prognosis is not good.

My doctors want me to come off the ADT. I'm not convinced I understand why. I'm reluctant. I've so far had no serious side effects from the ADT (Orgovyx).

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It's a hard call. Castrate resistance isn't likely to emerge if you still have a lot of castrate-sensitive prostate cancer, but you want *no* active cancer. For earlier-stage prostate cancer, there's good evidence now that benefits to other areas of your health (heart, bones, muscles, endocrine system) from "ADT holidays" outweigh the additional risk of prostate-cancer progression for overall survival, but the biggest trial to date for intermittent therapy for metastatic prostate cancer — the phrase III SWOG trial — still showed a clear overall survival benefit for continuous ADT over intermittent: https://pubmed.ncbi.nlm.nih.gov/24395278/

Of course, that may change, especially as they collect more data from people getting the latest therapies. But if you're concerned, it's worth bringing up SWOG with your oncologist. Best of luck, whatever, you decide!

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I am also G9 CR stage 4a I was on Lupron and Erleada for 6 months then surgery then 6 more months of drugs That started 41 months ago and my PSA has been undetectable since surgery in June of 2022. My UCLA urologist has advised me that my event free status is the result of the experimental treatment that I received. Look into androgen restrictive drugs such as Erleada Good luck

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@hbp

I am also G9 CR stage 4a I was on Lupron and Erleada for 6 months then surgery then 6 more months of drugs That started 41 months ago and my PSA has been undetectable since surgery in June of 2022. My UCLA urologist has advised me that my event free status is the result of the experimental treatment that I received. Look into androgen restrictive drugs such as Erleada Good luck

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I am diabetic type 2 and also have reduced kidney function eGFR about 40. So, something like what you suggest might not work good for me.

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I think you are worrying about the wrong thing. I’ve had PC for 15 years and I’ve Been castrate resistant for six years. I’ve had four reoccurrences but have not had one for four years. I’ve been undetectable for the last 19 months.

I know a lot of other people who are castrate resistant and have been around for decades.

The longer you stay on ADT the more likely it is that you will become castrate resistant. The average is 2 to 3 years, but some people can go up to nine years.

You have been undetectable a long time,I have heard from doctors who recommended others stop ADT In similar situations. If you decide to follow your doctors Advice you could get PSA tests every month to make sure that if your PSA starts rising, you can immediately get back on ADT. There are an awful lot of people who do this. Over at the weekly advanced prostate cancer meeting at Ancan.org There are a few people that have done that With cases similar to yours.

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@jeffmarc

I think you are worrying about the wrong thing. I’ve had PC for 15 years and I’ve Been castrate resistant for six years. I’ve had four reoccurrences but have not had one for four years. I’ve been undetectable for the last 19 months.

I know a lot of other people who are castrate resistant and have been around for decades.

The longer you stay on ADT the more likely it is that you will become castrate resistant. The average is 2 to 3 years, but some people can go up to nine years.

You have been undetectable a long time,I have heard from doctors who recommended others stop ADT In similar situations. If you decide to follow your doctors Advice you could get PSA tests every month to make sure that if your PSA starts rising, you can immediately get back on ADT. There are an awful lot of people who do this. Over at the weekly advanced prostate cancer meeting at Ancan.org There are a few people that have done that With cases similar to yours.

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I have followed your posts closely since my joining this forum. I greatly appreciate your experienced opinions. My Drs have just discontinued my prescription for Orgovyx-- so I guess I'm stopping.

I'm scared- fearful that my PSA will start to rise. But, I'll trust the Drs and we'll see how it goes.

My cancer was stage 4a, Gleason 9, Decipher .99 and I've been told since Day 1 that it's aggressive. So, I don't understand the reasoning for coming off ADT. Seems to me the side effects are worth taking vs my cancer increasing. But, we'll see what happens now.

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@ga73ds

I have followed your posts closely since my joining this forum. I greatly appreciate your experienced opinions. My Drs have just discontinued my prescription for Orgovyx-- so I guess I'm stopping.

I'm scared- fearful that my PSA will start to rise. But, I'll trust the Drs and we'll see how it goes.

My cancer was stage 4a, Gleason 9, Decipher .99 and I've been told since Day 1 that it's aggressive. So, I don't understand the reasoning for coming off ADT. Seems to me the side effects are worth taking vs my cancer increasing. But, we'll see what happens now.

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You have to realize that if your PSA starts rising quickly they will put you right back on and you will not have any cancer spread. That will tamp it down again.

Sometimes they want you to get three month PSA tests. Request that they give you monthly test for the first six months. I’ve had monthly test for eight years and you do what you have to do to keep it under control.

At that point what you’re looking for is if the PSA rises what is the doubling rate? If it’s quick you go right back on ADT. If it goes to .02 and then takes six months to go to .04 It’s probably still worth waiting for the next few tests. Your doctor is the one that will be looking at these numbers and telling you what the best option is.

I know a lot of people with Gleason 9 that have done what you’re doing successfully for a year or more.

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I agree with prior posts. Drug “holidays” are a real thing. I’ve done it on Lupron, and hope to get some vacation in time from Orgovyx + Nubeqa that I am starting as of today.

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@ga73ds

I have followed your posts closely since my joining this forum. I greatly appreciate your experienced opinions. My Drs have just discontinued my prescription for Orgovyx-- so I guess I'm stopping.

I'm scared- fearful that my PSA will start to rise. But, I'll trust the Drs and we'll see how it goes.

My cancer was stage 4a, Gleason 9, Decipher .99 and I've been told since Day 1 that it's aggressive. So, I don't understand the reasoning for coming off ADT. Seems to me the side effects are worth taking vs my cancer increasing. But, we'll see what happens now.

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❝ Seems to me the side effects are worth taking vs my cancer increasing. But, we'll see what happens now.❞

That's been my choice so far, too, with stage 4b. On ADT+Apalutime since 2021, my cancer has remained castrate-sensitive (PSA< 0.01 on the ultrasensitive test) with clean scans, and I'm tolerating it well (normal bloodwork, heart in good shape, decent energy level, only very minor muscle and bone-density loss), so I don't feel very tempted to roll the dice and maybe have my cancer come back castrate-resistant just to avoid inconveniences like occasional hot flushes and gynocomastia. My oncologist concurs.

I'm not ruling an "ADT holiday" forever, but I need either strong evidence that it's suitable for metastatic PCa, or serious comorbidites that make staying on hormone therapy dangerous. So far, neither has emerged.

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@lsk1000

I agree with prior posts. Drug “holidays” are a real thing. I’ve done it on Lupron, and hope to get some vacation in time from Orgovyx + Nubeqa that I am starting as of today.

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What stage is your cancer at? There's strong evidence to support ADT holidays for non-metastatic prostate cancer, and maybe even localised spread (not sure about the latter). Taking ADT holidays at stage 4 is more controversial, but still, it's very much a personal and reasonable decision.

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@northoftheborder

What stage is your cancer at? There's strong evidence to support ADT holidays for non-metastatic prostate cancer, and maybe even localised spread (not sure about the latter). Taking ADT holidays at stage 4 is more controversial, but still, it's very much a personal and reasonable decision.

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At diagnosis and surgery-- Stage 4a, Gleason 9, Decipher .99.

Surgery then radiation and ADT. PSA < 0.01 for over 2 years.

Comorbidities are diabetes type 2, high blood pressure, and reduced kidney function (eGFR ~40). On medication for all.

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