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ABIRATERONE ? SIDE EFFECTS? EXPERIENCES?

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User
Posted 06 May 2025 at 16:22

Hi ALL 

Hope you're all managing to keep well, or as well as possible! 

update; well Ian's been on Abiraterone for a month or so now, with what we think might be some unpleasant side effects, including skin irritation and bouts of diarrhoea. We have been on holiday to Tenerife and I'm not sure how much of these symptoms might not be ascribable to too much sun/spanish tummy/not enough hydration. There were rumours that there had been norovirus in the resort so we took extra special care re hygiene, and even took a pack of clinell wipes with us and dioralyte sachets! We arrived on the friday and Sunday, all day, Ian had rampant D+V, poor chap, I didn't have any issues at all and it had cleared itself by the monday evening which made me question whether it was something he'd picked up or a side effect of the tablets. We asked the oncologist today if it was a known side effect and he said yes but it tends to be ongoing symptoms not isolated episodes [IAN had another episode of diarrhoea yesterday , again, just the one] 

poor bloke, trying to keep his spirits up, he was getting very down in the dumps with everything. So the consultant today said leave off the tablets for a month, see if we get any D+V WITHOUT the meds and then see h im again in a month and review. 

I can't remember now what he said about the skin irritation but we'll see if that clears up within the month. Luckily he's growing a beard and moustache for the play his drama group are putting on in the summer so he's excused from shaving! [ouch!]

so that's us! we did actually manage to enjoy our holiday after that initial hiccup! 

User
Posted 06 May 2025 at 19:52
Hi Kate,

My Husband was on Abi for four years before it failed. Side effects were weight gain, tiredness, mood swings, bone pain, all the usual suspects. He never had diarrhoea, , although skin is now more sensitive to sun.Has to use factor 50 now, instead of his usual 15/20.

Hope your Hubbie does well on the Abiraterone.

User
Posted 07 May 2025 at 09:06

Hi Kate. My husband has been on Abiraterone since October. He was bothered with diarrhoea - I think it was about a month in till it settled. He’s bothered with it again now but we’re putting it down to the 4 weeks RT in Feb/ Mar now, rather than the Abi. His skin has been ok but he did get pretty badly sunburnt on a day where nobody else did at all - it was in Scotland and not a particularly sunny day so we were taken by surprise as his skin has never been sensitive to the sun before. Presumably that was the Abi, so he’s been very careful about sunscreen since then. Initially joint pain was very bad, but that stopped altogether after he started working with a PT at the gym. He doesn’t have nearly the energy he had pre-treatment but we’re learning to manage it, and as long as we make sure if he has a busy afternoon planned we keep the morning and evening quieter etc his quality of life is good, and he’s still managing to enjoy his lawn bowling, capering with the grandkids, working on his woodworking projects etc.  We were told the Abi should but the chances of the cancer coming back by about 40% in a Gleason 9 patient so we’re very keen to try and stick it out. Good luck with it all. Hope the side effects settle soon  🍀💕

User
Posted 07 May 2025 at 17:42
Hi Kate,

I’m just coming up to 8 months on the Abiraterone. I have to take it with prednisone which does affect the stomach. I assume he does too? I’ve found taking the prednisone ( even the gastro resistant) with food helps and taking omeprazole too ( has to be 2 hours later). Stomach can be a little queasy still sometimes and one side effect I get is dehydration which doesn’t help. Drink like a fish now and sadly not wine anymore 😔My skin isn’t too bad but it’s got very dry. Again in the sun I now have to be careful not to burn ( never an issue before). Put these with the hot flushes from the adt and I can imagine it won’t help matters when it’s hot. Really hope things get better soon.

Stuart

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User
Posted 06 May 2025 at 19:52
Hi Kate,

My Husband was on Abi for four years before it failed. Side effects were weight gain, tiredness, mood swings, bone pain, all the usual suspects. He never had diarrhoea, , although skin is now more sensitive to sun.Has to use factor 50 now, instead of his usual 15/20.

Hope your Hubbie does well on the Abiraterone.

User
Posted 07 May 2025 at 09:06

Hi Kate. My husband has been on Abiraterone since October. He was bothered with diarrhoea - I think it was about a month in till it settled. He’s bothered with it again now but we’re putting it down to the 4 weeks RT in Feb/ Mar now, rather than the Abi. His skin has been ok but he did get pretty badly sunburnt on a day where nobody else did at all - it was in Scotland and not a particularly sunny day so we were taken by surprise as his skin has never been sensitive to the sun before. Presumably that was the Abi, so he’s been very careful about sunscreen since then. Initially joint pain was very bad, but that stopped altogether after he started working with a PT at the gym. He doesn’t have nearly the energy he had pre-treatment but we’re learning to manage it, and as long as we make sure if he has a busy afternoon planned we keep the morning and evening quieter etc his quality of life is good, and he’s still managing to enjoy his lawn bowling, capering with the grandkids, working on his woodworking projects etc.  We were told the Abi should but the chances of the cancer coming back by about 40% in a Gleason 9 patient so we’re very keen to try and stick it out. Good luck with it all. Hope the side effects settle soon  🍀💕

User
Posted 07 May 2025 at 17:42
Hi Kate,

I’m just coming up to 8 months on the Abiraterone. I have to take it with prednisone which does affect the stomach. I assume he does too? I’ve found taking the prednisone ( even the gastro resistant) with food helps and taking omeprazole too ( has to be 2 hours later). Stomach can be a little queasy still sometimes and one side effect I get is dehydration which doesn’t help. Drink like a fish now and sadly not wine anymore 😔My skin isn’t too bad but it’s got very dry. Again in the sun I now have to be careful not to burn ( never an issue before). Put these with the hot flushes from the adt and I can imagine it won’t help matters when it’s hot. Really hope things get better soon.

Stuart

User
Posted 08 May 2025 at 13:43

Thanks everyone, yes I think he will definitely have to ramp up the sunscreen, at the moment he only uses factor 30, which is what he was using on holiday, I use factor 50 because I burn quite badly, he did get very sunburnt and he's normally sensible about things like that, working in the NHS, you see what can happen! He's dreadful for not drinking enough! though! I'm always telling him off about that! [my nickname is now apparently Nurse Ratchet!😄] He'll fill a 500ml bottle and that will be his lot for the day! no where near enough! The skin irritation is like cold sores but they're all over his upper and lower lip and chin, really really sore, he was using chapstick, vaseline and he got some anti fungal stuff from the chemist whilst we were away, it's clearing up a bit now though. Flow test today, sounds like apparently they fill him full of fluid and then he has to pee into a bucket for 2 hours! The fun never stops!

 

We're seeing the oncologist again in June and review the Abiraterone, the oncologist mentioned maybe restarting on a lower dose and see if he can tolerate that, and I know my partner is keen to keep on with it especially as it's supposed to significantly lower the risk of recurrence/secondary cancer spread. He's having his next injection in June as well. 

Thanks for all the messages, will keep you updated. 

Edited by member 09 May 2025 at 07:32  | Reason: Not specified

 
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