Not happy with change of treatment.

Hello Peter  (Peter31970) 

I can understand your post - your treatment has been changed and the side effects have kicked in. I did a little bit of "digging" and found the advice from NICE regarding the prescribing of Enzalutamide and there is a link to this here:

NICE guidelines prescribing Enzalutamide

My reading of this is it works better if used in conjunction with Hormone Therapy.

I have been on HT for 3 years and had every side effect going - plus some not on the list. I have tolerated them and life has gone on much as normal. I have had to make changes with my medication for both blood pressure and type 2 diabetes but a quick conversation with our GP pharmacist sorted the issue out.

I do hope this helps, if I can do anything else for you please do let me know.

Best wishes - Brian.

Thanks for that link but it does not explain why I was given Enzalutamide on it's own 3 years ago when that advice was already out unless my consultant was too focussed on his retirement back to Poland. C'est la vie. Onwards and upwards. I'm still here when one of my mates was diagnosed too late.

Hello Peter

It's called the NATIONAL Health Service - but it's the individual consultants who go their own way. We can have 2 Community Members with the same diagnosis but under two different health authorities and they both get a totally different treatment path.

I know the statistics for Prostate Cancer diagnosis and I am under a large group GP practice but quite often when I go in with an issue - type 2 diabetes for example, the first words the GP says are "What do YOU think we should do Brian?

I am a great believer we should all understand our medication/issues and at least try and advocate for ourselves - but when the GP/Consultants are all different well - what can I say.

As you said 

Peter3197 said:

Onwards and upwards.

Best wishes - Brian.

Good morning Peter3197 . There was a trial using Enzalutamide monotherapy and comparing it to Leuprolide monotherapy or a combination of the two. There was a 3% improvement in progression free survival with the combined therapy compared to Enzalutamide monotherapy and a 7% improvement in overall survival. Consultants do have some autonomy on what they prescribe so maybe either have a reasoned discussion with your current consultant or seek a second opinion at a centre of excellence.

https://www.nejm.org/doi/full/10.1056/NEJMoa2303974

The FDA (American governing body) has recently approved Enzalutamide monotherapy for high risk patients and usually NICE takes a while for it to subsequently get through their governing systems. This has been as a result of a trial which has been ongoing for 8 years.

https://www.cancer.gov/news-events/cancer-currents-blog/2024/fda-xtandi-prostate-cancer-psa-recurrence

Interestingly this article also suggests that if you have demonstrated a good response to the therapy with a negligible PSA over a period of time then there might be some benefit of coming off the HT until the PSA starts to rise again. This can have the benefit of giving your body a rest plus it can increase the time before the cancer becomes hormone resistant.