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Stopping Relugolix Hormone Tablets Early.

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User
Posted 03 May 2026 at 19:57

Hello, I am new to this Forum.

I was diagnosed with aggressive, Gleason 9, prostrate cancer, that had not spread, in early 2025. I started Relugolix tablets in May 2025 and completed 20 sessions of radiotherapy in November 2026. I was told that I would be on Relugolix for 2 years. I am fed up of the ongoing side effects and want to feel like a man again! My PSA is 0.2. I have started a dialog with my Oncologist about stopping Relugolix early in an attempt to improve my quality of life. Any experience or comments would be most welcome. 77 year old male, keen cyclist, also on heart medication but atrial fibrillation now under control.

Peter.

User
Posted 06 May 2026 at 08:45
JUly 2022 commenced HT (Decapeptyl) after recurrent PSA had reached 17.5. PSA fell to 0.3 after 7 months treatment but side effects were extreme, so oncologist agreed to HT 'holiday', advising resumption when PSA returned to 5.0

However, side effects continued over following years, so refused to restart HT when PSA had exceded 5.0 in February 2025. PSA has since continued steady rise and currently stands at 14. Meanwhile annual bone, PET and/or MRI scans have all remained clear so onco has reluctantly agreed to further delays in resumption of HT but believes it will be imperative to recommence when PSA reaches 20.

User
Posted 04 May 2026 at 00:36

Roughly speaking, the hormone therapy halves the recurrence rate. If it did recur, you might find yourself on hormone therapy for life.

Having said that, You've done probably the most important part of the hormone therapy, but I think all oncologists would say just 1 year is on the short side for a Gleason 9. Stopping now will probably increase your chance of recurrence, but not as much as never having used hormone therapy at all, so less than double the chance. Your oncologist might be able to give you an idea of the extra risk of stopping early.

User
Posted 04 May 2026 at 08:21

Hi Peter 

Perhaps try mitigating the side effects first.

Perhaps try the nurses on this website .

There arecsome excellent videos from Mark Schulz US expert on alleviating symptoms.

I believe there is also a trial using half doses which are still effective 

User
Posted 04 May 2026 at 08:49
Gleeson 9 did 2 years of hormone therapy, stopped 18 months ago , so far so good , last PSA 0.05.
User
Posted 08 Aug 2026 at 08:51

Stick with the medication. 

Do you have a partner? Can you work together on this? No joke intended 

Husband is on HT and knows in his brain he wants to keep things going. I value our life together hugely too. I think he also does have some libido left just not how it was. 

So we've just naturally evolved strategies. He takes 5mg tadalafil and 100mg Sildenafil but no Tadalafil a day or so before and after. 

The brain plays a huge part in this and the memory. The nurses on this website are very good although we haven't tried that. 

BTW we are both in our 70s 

Edited by member 08 Aug 2026 at 08:53  | Reason: Not specified

User
Posted 31 Aug 2026 at 06:34

Hello,

I asked ChatGPT about some of the things said in this forum, and life is not quite so straightforward when you look at the outcomes of the various trials.

As far as I can learn, when prescribing an ARI (such as enzalutamide) for metastatic prostate cancer, the EAU guidelines state that ADT (such as Decapeptyl) should be prescribed as well. So testosterone is reduced to castration level and the cancer cells also have the androgen receptor blocked — essentially a double strategy.

I wanted to remain on enzalutamide but stop the Decapeptyl, as I have a severe lack of energy which I believe is largely due to the Decapeptyl. This regime is not the standard recommendation in Europe, so my oncologist was very against the suggestion.

However, I have an email from the German professor who gave me the 177Lu-PSMA therapy strongly suggesting that the Decapeptyl should be given a holiday, while the enzalutamide should continue at 80 mg/day (instead of the usual 160 mg/day). My oncologist eventually agreed.

I am now having PSA and testosterone measured every three months. Currently my PSA is <0.01 ng/mL. After more than a year on Decapeptyl my testosterone will have been at castration level, but it will now be interesting to see how quickly it recovers after stopping it — and, most importantly, what happens to the PSA as it does - and of course on my energy levels.

It is not clear to me exactly how strong the evidence is for always combining ADT and an ARI, but certainly I think oncologists are much more comfortable following the established guidelines than taking an alternative path.

Stay strong and keep this thread going.

Crispin

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User
Posted 04 May 2026 at 00:36

Roughly speaking, the hormone therapy halves the recurrence rate. If it did recur, you might find yourself on hormone therapy for life.

Having said that, You've done probably the most important part of the hormone therapy, but I think all oncologists would say just 1 year is on the short side for a Gleason 9. Stopping now will probably increase your chance of recurrence, but not as much as never having used hormone therapy at all, so less than double the chance. Your oncologist might be able to give you an idea of the extra risk of stopping early.

User
Posted 04 May 2026 at 08:16

Andy, thank you, very helpful.

User
Posted 04 May 2026 at 08:21

Hi Peter 

Perhaps try mitigating the side effects first.

Perhaps try the nurses on this website .

There arecsome excellent videos from Mark Schulz US expert on alleviating symptoms.

I believe there is also a trial using half doses which are still effective 

User
Posted 04 May 2026 at 08:49
Gleeson 9 did 2 years of hormone therapy, stopped 18 months ago , so far so good , last PSA 0.05.
User
Posted 06 May 2026 at 08:45
JUly 2022 commenced HT (Decapeptyl) after recurrent PSA had reached 17.5. PSA fell to 0.3 after 7 months treatment but side effects were extreme, so oncologist agreed to HT 'holiday', advising resumption when PSA returned to 5.0

However, side effects continued over following years, so refused to restart HT when PSA had exceded 5.0 in February 2025. PSA has since continued steady rise and currently stands at 14. Meanwhile annual bone, PET and/or MRI scans have all remained clear so onco has reluctantly agreed to further delays in resumption of HT but believes it will be imperative to recommence when PSA reaches 20.

User
Posted 08 Aug 2026 at 06:45

Hello LifesTooShort

If I understand correctly you have stopped Decapeptyl due to the side effects (I agree with you there) - but why not have an ARI such as Enzalutamide or another in this family to control the rise in PSA?

courage

Crispin

User
Posted 08 Aug 2026 at 08:38

Things have moved on a bit. I have seen oncologist again about stopping Relugolix and I suggested then monitoring my PSA. He pointed out that as I was Gleason 9 there was a chance cancer might spread to other parts of my body and that PSA might  not pick that up. I decided to stay on Relugolix for another 4 months and pursue sexual function activities using pump, Sildenafil and "self help", but I am finding no libido significantly affects getting stimulated !

Edited by member 10 Aug 2026 at 23:46  | Reason: Not specified

User
Posted 08 Aug 2026 at 08:51

Stick with the medication. 

Do you have a partner? Can you work together on this? No joke intended 

Husband is on HT and knows in his brain he wants to keep things going. I value our life together hugely too. I think he also does have some libido left just not how it was. 

So we've just naturally evolved strategies. He takes 5mg tadalafil and 100mg Sildenafil but no Tadalafil a day or so before and after. 

The brain plays a huge part in this and the memory. The nurses on this website are very good although we haven't tried that. 

BTW we are both in our 70s 

Edited by member 08 Aug 2026 at 08:53  | Reason: Not specified

User
Posted 09 Aug 2026 at 20:46

Originally Posted by: Online Community Member

Hello LifesTooShort

If I understand correctly you have stopped Decapeptyl due to the side effects (I agree with you there) - but why not have an ARI such as Enzalutamide or another in this family to control the rise in PSA?

In the UK, I don't think you can be prescribed an ARPI without being on one of the base hormone therapy medications. That's a shame because some small scale trials have shown they do work by themselves.

Enzalutamide, Darolutamode and Apalutamide by themselves would probably have fewer side effects and by themselves, they are bone strengthening rather than bone thinning. They would probably need to be taken with low dose Tamoxifen (same as for Bicalutamide by itself).

Abiraterone looks like it may make the base hormone therapy medication redundant, because it also stops the Testicles from producing Testosterone, but because of that, it isn't likely to reduce side effects.

Edited by member 09 Aug 2026 at 20:46  | Reason: spelling

User
Posted 10 Aug 2026 at 08:41

Hello Andy62

I have read your profile -  I find it quite impressive.  I will discuss stopping decapeptyl but continuing with enzalumide with my french oncologist this week.  This goes against the guide line that recommend an ADT for the rest of the life for anyone who has metastatic prostate cancer -  so it will be a difficult conversation.

Keep going with all your talks on ADT and cancer awareness.

Crispin

User
Posted 30 Aug 2026 at 21:09

I have just come off ADT (Decapeptyl like you). I had horrendous depression and all the other side effects but being only Gleeson 7 and still encapsulated the decision was easy.

However in the U.S. for metatastic cancer they pulse the ADT on and off. This gives a break and also may prevent resistance to the therapy building up in the PC.

User
Posted 30 Aug 2026 at 21:29
I only lasted about 4 weeks on Relugolix before the mood swings and depression became too acute for me to safely continue. The mental health support from the hospital was completely non-existent. I’m not sure what is next for me but unless I can find some specialist support I shall probably just take my chances with the cancer.
User
Posted 30 Aug 2026 at 21:36

You might be talking about Intermittent Hormone Therapy (IHT), or Bilateral Androgen Therapy (BAT), two different things.

IHT is used in the UK for men whose PSA only rises quite slowly. You go on to HT to bring your PSA low and hold it there for an agreed time. Then you come off the HT (called a hormone therapy holiday) and allow your PSA to rise. When it reaches an agreed level which depends how high it's been before and might typically be 5, 10, 15, or 20, you restart HT. Men on IHT are usually off HT more than they're on it (or it isn't really suitable for you). Trials have shown this doesn't significantly reduce life expectancy, but does improve quality of life.

BAT isn't used in the UK as far as I know. For this, you switch faster than can be done by going on and off HT, so you stay on HT all the time, but take Testosterone Replacement during the testosterone periods. I only know one person who persuaded their oncologist to let them try it in the UK, and he was in this forum. Unfortunately, the cancer went rampant on his first testosterone period, causing him to die from the cancer.

User
Posted 30 Aug 2026 at 21:42
This is truly a let down for you. Surely you could try one of the other drugs? Husband is on Decapeptyl which I believe can be slightly kinder. He has been relatively OK. Activity and exercise I think play a big part in this.

Is your GP of any help?

There are a few on here who have been on Sertraline whilst on ADT

Hoping you can find a happier solution to this

User
Posted 31 Aug 2026 at 06:24

Thanks for your comment. Best of luck.

User
Posted 31 Aug 2026 at 06:34

Hello,

I asked ChatGPT about some of the things said in this forum, and life is not quite so straightforward when you look at the outcomes of the various trials.

As far as I can learn, when prescribing an ARI (such as enzalutamide) for metastatic prostate cancer, the EAU guidelines state that ADT (such as Decapeptyl) should be prescribed as well. So testosterone is reduced to castration level and the cancer cells also have the androgen receptor blocked — essentially a double strategy.

I wanted to remain on enzalutamide but stop the Decapeptyl, as I have a severe lack of energy which I believe is largely due to the Decapeptyl. This regime is not the standard recommendation in Europe, so my oncologist was very against the suggestion.

However, I have an email from the German professor who gave me the 177Lu-PSMA therapy strongly suggesting that the Decapeptyl should be given a holiday, while the enzalutamide should continue at 80 mg/day (instead of the usual 160 mg/day). My oncologist eventually agreed.

I am now having PSA and testosterone measured every three months. Currently my PSA is <0.01 ng/mL. After more than a year on Decapeptyl my testosterone will have been at castration level, but it will now be interesting to see how quickly it recovers after stopping it — and, most importantly, what happens to the PSA as it does - and of course on my energy levels.

It is not clear to me exactly how strong the evidence is for always combining ADT and an ARI, but certainly I think oncologists are much more comfortable following the established guidelines than taking an alternative path.

Stay strong and keep this thread going.

Crispin

 
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