Coming off Enzalutamide

User

Posted 09 Apr 2025 at 20:54

Hello everyone,

I was diagnosed at the age of 47 with Metastatic (pelvis) Prostate Cancer 3 years ago with a PSA of 34. I was immediately put on Zoladex and very soon after on enzalutamide. Some months later I went through 30 days of radiotherapy all around my pelvic area, including prostate, etc. From the very start of the treatment, my PSA has remained undetectable and I'm doing pretty well, never stopped working, going to the gym and swimming pool 4 times per week and just getting on with my life.

Apparently I'm doing so well that my Consultant has suggested that I drop enzalutamide all together and carry on taking zoladex.

Has anyone stop using enzalutamide on their consultant's suggestion because they were doing very well? How are you doing? Anyone had to re-start enzalutamide because their PSA increased? Did you manage to get it prescribed again under the NHS?

Thank you!

User

Posted 10 Apr 2025 at 09:14

Sorry can’t help you with the answer but giving you a bump in the hope someone can😊

User

Posted 10 Apr 2025 at 13:19

I can't answer your question directly, but here's my experience: I was put on Enza in 2021, 2 years after my initial diagnosis (see my profile for full details), as my PSA started to rise.

The Enza did a good job of keeping my PSA suppressed until late 2023, at which point my PSA was rising. I wasn't surprised by this, as Enza is reckoned to be effective only for around 2 to 3 years in cases such as ours. With my PSA rising, my consultant said that there was no point continuing with the Enza so I stopped.

I was surprised to find that I had more energy after stopping the Enza: I never felt while taking it that it was making me lethargic, but the increase in get-up-and-go when I stopped indicated otherwise.

As I say, I know that isn't answering your question, but hopefully it's useful information.

cheers, Craig

User

Posted 10 Apr 2025 at 18:02

I have been on Abiraterone for over 3 years with PSA undetectable still. I appreciate not Enza exactly but similarly been on Prostap and had RT etc.

The reason for commenting is that I was asked 6 months ago or so whether I wanted to “have a break as I was doing so well”

I decided not to bother:-

1. If it ain’t broke….my symptoms are very manageable. Also I was Gleason 9 so aggressive. Why take any unnecessary risk!

2. would I have issues being re-perscribed under the NHS?

After saying no, they accepted that happily and I’ve just carried on since.

best

Kevin

Edited by member 10 Apr 2025 at 18:04 | Reason: Spelling

User

Posted 24 Apr 2025 at 10:16

This is a timely post for me. I have not been on Enzalutamide (so I’m not sure how much use this will be to you) but have been on Abiraterone and am facing a similar decision to Kevin.

I was diagnosed in 2022; PSA not very high (only 6.4 but an rapid increase from 9 years at 0.7 or so) but going through all the tests found Gleason 5 + 4, and spread into the lymph nodes in my rectum. 37 fractions of RT, Prostap 3 monthly, Abiraterone & Prednisolone daily. September 2025 will be 3 years of treatment and, as the treatment has worked so well Oncologist meeting in two weeks is discuss potentially coming off treatment (not sure yet if that is just Abi or both Abi and Prostap). Originally they said I’d be on ADT for life.

I have remained very active - ave 15k steps a day, cycle, golf, walking rugby, gym sessions; chair 3 charities, sit on 3 others, just taken over as High Sheriff but side effects have been quite bad especially muscle loss (legs in particular) and fatigue + some radiation damage to my rectum and bowel incontinence.

As first line treatment I could only have Abiraterone on Private Medical Insurance and my premium has gone through the roof.

I would love to give my body a break (and stop my PMI) but I’m concerned about what my options would be if/when I need treatment in the future on the NHS, how quickly I will be able to get it and how I will cope psychologically with constantly watching for PSA increases. I guess I will learn more at the meeting at which my sister-in-law (a retired GP) will be accompanying me again.

Good luck with your own decision.

Best

Ian

User

Posted 13 Jun 2025 at 09:51

Thank you for your reply! This seems the closest case to mine.

What decision did you take in the end? My appointment is coming up in a week and I'm still a bit undecided.

My side effects have gone worse, still holding a very demanding job and going to the gym/swimming 4-5 times per week. But I'd love to recover a solid sleep pattern every night and I also want to avoid future side effects (diabetes and CV problems in the long term, as I understand).

What's your experience?

Thank you for sharing!

Carlos.

User

Posted 23 Jun 2025 at 17:37

Hi,

I hope that your appointment went well and that you are happy with your decision. I don't have any direct experience of stopping Enza - although my journey so far has been very similar to yours. I'd be very surprised if there was any problem getting it prescribed again on the NHS as it has worked well for you so far. I suppose another option that might be worth discussing with your consultant is reducing the dose if side effects are becoming too bothersome.

I don't think there's any strong evidence for either dose reduction or treatment 'holidays'. So, it probably is about discussing the pros and cons with your consultant, making the decision that feels right for you and keeping everything crossed!

https://pmc.ncbi.nlm.nih.gov/articles/PMC11235015/

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