abiraterone for metastatic

User

Posted 07 May 2026 at 19:21

My husband diagnosed in 2024 Gleason 4+4 mets to pelvic bone 6cm and pubis bone. Had chemo Sept 2024 (post ct scan showed slight improvement) and being managed on ADT with undetectable PSA since. He had his routine onco appt and reported sharp pains and stomach discomfort after eating. Onco referred for CT scan and we have results appointment next week. We had previously thought abiriterone was suitable once his current hormone treatment stops working but we heard the stampede trial showed it can help him now and taken alongside his current hormone treatment.

obviously we intend discussing this with the Onco next week but would value reassurance that our understanding is correct.

Thank you 😊

User

Posted 08 May 2026 at 08:11

Hi ,another wife here ! My husband’s stats were 4+5 spread to para aorta nodes , he also had early chemo . He was part of the stampede trial but arm j that included both Abi and Enzo . He was 55 at diagnosis and 66 now , he’s still working and living for today .

When he was on both drugs plus other meds he was constantly tired ,then about 3 yrs ago the trial concluded and said taking both meds had no overall benefit to taking just one so they stopped Enzo and kept him on Abi . His strength and tiredness began to ease . He’s nowhere near as strong as he was ( he is 10 yrs older ) but the tiredness has become less . But the main thing is his PSA has remained as undetectable all this time .

Best of luck in your journey, I hope this at least gives you some comfort and you both can enjoy many years to come.

Debby

User

Posted 11 May 2026 at 20:15

Thank you Chris

Yes I agree QOL is important we’ve already lost so much. The oncologist knows our views on QOL so that may have led to his decision. I didn’t realise this drug affected QOL I will read up on it.

Thank you Chris and I hope you can re stabilise your psa.

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User

Posted 07 May 2026 at 23:25

Abiraterone is now being used as an upfront treatment rather than a last resort treatment. Perhaps Andy62 will come along and give you a full explanation.

Thanks Chris

User

Posted 07 May 2026 at 23:25

Yes, your husband might well be eligible for abiraterone, Enzalutamide or similar drugs in addition to ADT. Stampede and other trials suggest they are effective. Certainly worth discussing with your oncologist.

Best wishes for the scan results

User

Posted 08 May 2026 at 02:28

Thank you for replying Chris we will ask about it next week.

User

Posted 08 May 2026 at 02:33

Thank you for replying, I’ve read a few guys saying they suffered more side effects with Enzalutemide. We are a bit worried as my husband was initially given a choice of chemo or enzalutimide and he chose chemo because the oncologist said clinical trials showed it could give him extra time. So I don’t know if the oncologist will agree to him having abiraterone as well as his hormone injections. We just want the best for him.

User

Posted 08 May 2026 at 08:11

Best of luck in your journey, I hope this at least gives you some comfort and you both can enjoy many years to come.

Debby

User

Posted 08 May 2026 at 08:23

Hi Debby I’m sorry your hubby too but thank you for sharing as it helps reassure knowing he is managing well 10 years later. It’s great he’s still working too. Is your hubby on hormone injections as well as the Abi? My hubby suffers fatigue and bone pain (the chemo reduced this pain) he’s emotional and can’t do as much as he used to but we have lots of family/friends time and holidays which exhausts us both but really helps.

Thank you this does give us comfort and we are positive for many years to come.

User

Posted 08 May 2026 at 08:32

Originally Posted by: Online Community Member

Thank you this does give us comfort and we are positive for many years to come.

yes he has the prostap hormone injection plus a steroid tablet to take with the Abi . It’s great that you have support from family and friends ,it makes a big difference. At the start of Gary’s journey we had no grandchildren and he worried he wouldn’t see any ,but we’re about to welcome number 8 !! We also enjoy holidays but we mainly do cruises as he also has rheumatoid arthritis in both knees and hips and can’t walk as far now .
sending lots of hugs to you as the partner often gets forgotten.

Debby

User

Posted 08 May 2026 at 10:05

Hi Debby yes we have 2 grandchildren who light up our lives. It’s lovely you now have 8 after your initial worries. Yes we find Cruising a good option too for the same reason. Thank you for this information, we think hubby wasn’t offered it initially as the previous protocol was only to give second gen hormone treatment after first one has failed. But now metastatic men now qualify for this even if they’ve also had chemo. In my husband’s case the Aribiterone apparently helps bone mets as well.

We see the Onco next week so I’m glad we’ve done a bit of reading up on this so we feel ready to insist on it. Thank you again I appreciate your help. Xx

User

Posted 08 May 2026 at 17:21

Just sending some support for the emotional side as well. The Prostap was really hard on the emotions of my husband. The worst at 6-7 months. I had to learn to minimise his stress because slightest stress was a trigger.I was really worried. Quite a few of the gents on here reported this but I did not see those posts until later. My husband read books to learn to control his emotions and started walking a lot to help. I am relieved this has passed. If it happens again I hope I can convince him for a support group and medication. I hope those can work for your husband.

User

Posted 08 May 2026 at 17:39

Thank you for your reply my husband won’t go to support groups but keeping busy helps. I find I have a wobble myself after a holiday together. I feel a bit lost and the realisation comes back to me. I’m in that at the moment with the impending appointment. I’m glad your husband embraced some help. Thank you 😊

User

Posted 11 May 2026 at 18:49

Is Andy62 here?

We have oncology on Thursday with CT results. When we previously asked him about Arbiterone in tandem with ADT he said no its best to keep in in the armour for later (when the injections fail and PSA rises) we have since read that its best not to wait for PSA to rise but to take them together as this significantly improves survival.

My question is why did our oncologist state the above to us on diagnosis in 2024 and a few weeks ago? Was it because he gave us the choice between chemo and Enzolutemide and we chose Chemo? Have we missed the boat (again)

Do we need a different Oncologist?

Thank you if anyone can enlighten us greatly appreciated

User

Posted 11 May 2026 at 19:06

When you say ‘ significantly improves survival ‘ you are essentially looking at around 12 months but a great reduction in QOL during that term. I was offered HT with upfront Abi or Enza but refused on QOL issues. I’ve just completed 5 yrs on HT only and my psa is starting to climb again. I’ve been offered Abi again now , but 5 yrs on HT has been tough and really impacted my way of life and happiness and hobbies. I fully intend to put the Abi off for as long as possible and maintain what I have. You can’t beat an incurable outlook after all. It’s all about enjoying what you have in my eyes for as long as possible. I’m a wretched patient anyway. Good luck

User

Posted 11 May 2026 at 19:57

My reading of the final STAMPEDE trial results is that early ABI improves survival by on average 20 to 30 months compared to optional delayed ABI.

But everyone is different and I agree with Chris about the quality of life trade off.

I don't think you should have missed the ABI boat by opting for chemo first. If you want to go for it you could raise it with your oncologist again and if you don't get a satisfactory answer you could ask for a second opinion.

User

Posted 11 May 2026 at 19:59

Stampede findings

https://pmc.ncbi.nlm.nih.gov/articles/PMC7616864/

User

Posted 11 May 2026 at 20:15

Thank you Chris

Yes I agree QOL is important we’ve already lost so much. The oncologist knows our views on QOL so that may have led to his decision. I didn’t realise this drug affected QOL I will read up on it.

Thank you Chris and I hope you can re stabilise your psa.

User

Posted 11 May 2026 at 20:17

Thank you for explaining this, can you be more specific about the affect on QOL please? We may already be there.

Thank you for the link very helpful

User

Posted 11 May 2026 at 20:42

I'm on Enzalutamide rather than Abiraterone so I don't have first hand experience. For me it is loss of sex drive, fatigue and a bit of brain fog that are the main issues. It's hard to know which of these are caused by the ADT and which by the Enzalutamide. For me they are manageable and worth it if they delay disease progression and the impact that has on quality of life.

I think there are also concerns about heart and bone health particularly with long term use.

User

Posted 11 May 2026 at 21:04

My husband lost his sex life after chemo and continued ADT and he suffers fatigue and Brain fog so he’s already lost a great deal of his QOL. Yes we agree it’s worth it to keep my husband here for as long as possible. We are lucky to have been given this time and we try to fill it nicely.

Thank you for replying it’s really helpful.

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