Aberaterone/Prednisolone Decision - Any Advice Appreciated - Especially Scottish and Welsh Fellow Travellers..

I'm in England and I started on it in 2024. 1000 mg a day+steroids
The side effects were bad. Fatigue being the worst.
I eventually had to have a break for a 3 months and started back on 500mg a day+steroids

It's a lot better.  Still have fatigue but nowhere near as bad.
I'm Stage 4 and PSA is still below 0.03 so it's obviously doing something ;-)

Hi DavidEBe8c214 ,

I'm also Gleason 9 and follow the 3 years HT, two of which with Abiraterone. As I'm in England I've had it privately via my work health insurance.

I've finished my 2 years of Abiraterone in November last year and am now on Orgovyx alone for the remaining 3rd year.

I agreed to it on my oncologist recommendation, and as the Stampede trial is very clear of the benefits for G9 with high PSA, but the side effects are significant.

The fatigue and brain-fog are at a completely different level when on Abiraterone and prednisolone, when compared to Orgovyx alone. When I was on Abiraterone I needed several naps a day and was completely exhausted all the time. Now on Orgovyx I'm just a bit tired and QoL is much better.

I do think the survival benefit is worth it, as it's 2 years of temporary suffering which hopefully will yield many years of medication free life.

Hope this helps 

G

Hello David

Thank you for your post. I have been watching this development with interest as I am a Gleason 9 T3aN0M0 however as I understand it although the Stampede trial showed the benefits if added for 2 years the England NHS Commissioning team have other ideas and from my understanding it should only be prescribed for

* Newly diagnosed T3/T4 people and within 12 weeks of starting ADT.

* T3/T4 people with a clinical relapse.

A link to the notes is here - NHS England Abiraterone.

Now I may be wrong but that's my understanding of the new prescribing rules. Perhaps others know more or have a better understanding of the new English prescribing rules.

Best wishes - Brian.

Thanks for sharing the the info. and honest appraisal. Sorry you suffered. I wonder if the dose is stage dependent? I am 'borderline' T4a ie Nothing on original CT, lymphs only shown by PSMA. Also, my PSA dropped from 11.4 to 1.1 after 1 month Orgovyx....It's all a trade off on pain/risk/benefit at end of the day.

Hi Brian, we can always count on you for swift and considered input. I have learnt so much from your posts this last 4 months. Thanks and keep up the great work.

I believe your understanding is 'spot on', so N0s and historic N1s (ie N1s not recently diagnosed) are not eligible.

I qualify as recently diagnosed T3 N1 in December 2025. My Oncologist has registered me as starting HT on 3rd January, so If I go ahead I have to start this within 3 months, so by 3rd April if/when the Local Trust signs off 'safety approval' (presumably admin and routine). I have a meeting next week and he will probably ask me whether I wish to go ahead or not. Hence my fact finding mission here on the pros and cons. What would you do, oh wise one?

Hello David (DavidEBe8c214 ) 

I have had almost 3.5 years on HT - I have had every side effect going and I have had some not even listed. I have never missed a day off work and have delt with every side effect as best I can.

DavidEBe8c214 said:

What would you do

At the moment I am on a biochemical relapse - so it's something that's waiting in the toolbox for me down the line. We are trialing intermittent HT at present but it may not work. Yes I would give it a go. Yes I have read posts from others and I am aware of the side effects. Yes I love life and will do anything to prolong it - I do value my quality of life which at the moment is excellent. IF it affected my quality of life and made it unbearable then I would consider my options but at the moment - yes I would have it.

I hope my ramblings help.

Best wishes - Brian.

Hi G,

Thanks for your reply. Your (and every)  insight will be of help in my decision making, for sure. Before 16th Jan.,my oncologist set my path (PlanA) to be RT+3yrs HT then see how that worked (50/50 DFP prognosis). and then add Abi/Pred if needed. Like you, I am doing relatively well on Orgovyx with the current  fatigue/brain fog being a nuisance but QoL just about tolerable for the next 3 years. I had no idea that the SEs were at a 'completely different level' with 'debilitating brain fog and and overwhelming fatigue' would affect one's QoL so much. 

Of course, the DFP/OS improvements are indisputable. Having read your profile. at age (then) 49 and initial PSA 43 I wholeheartedly agree that 2 years suffering will give you a great 'return on investment'. Well done on your 0.1 PSA.

In my case, with lower initial PSA (11), already down to 1 pre RT, marginal T4a and age 70, I am dithering on whether a better QoL for 2 of the next 3 years is worth rolling the dice for a hopefully good outcome in 3 years and move to Abi/Pred then if the 'Plan A' fails. I'm still enjoying tennis and travelling and that could be curtailed till age 73+ ... Quite a dilemma! A tough choice..What would you do?

Thanks Brian, your thoughts are always helpful. Intermittent HT and having 'other tools in the toolbox' is an interesting take, too. I wish you well with your path. As you (and many others) have pointed out...we all react differently with the SEs. So maybe a route for me is to take it and IF the QoL degradation is too much, then jump ship part way through...?

It's a difficult conundrum, trading current QoL for future QoL. In My case as I'm younger it was an easier choice. Maybe a middle ground could be appropriate for you, with 500mg Abiraterone rather than the usual 1000, as Slartibartfast  mentioned?

It's a difficult and personal decision.

I found travelling hard when on Abiraterone (I still did it, but it was a struggle), now on Orgovyx only I've just had a great skiing vacation last week with no issues, and managed several hours of skiing a day.

G

Hello David (DavidEBe8c214 ) 

Yes, I would take it - as you say if it takes out your Quality of Life you can "jump ship".

Like you I am 70 - my initial PSA was 182 - I am over 4 years into my journey and I thought the side effects of HT would get the better of me - yes I had a couple of weeks when I wanted to give up - BUT I am here doing well. I know I don't fit into any "proper treatment plan" but hey - so far so good - if you don't try something you will never know (I almost said "live to regret it") but I hope it's the other way round.

Go for it.

Best wishes - Brian.