My husband is starting abiraterone on 1 Sept. We have loads of information, most of it a bit alarming. Is there someone here who can give some positive feedback on taking it?
We have a member BarryW whose husband has been on Abiraterone and the accompanying steroid for a while. This is her response from 5 months ago.
Great to know that your husband had a PSA of 2150 at diagnosis and he is still going strong 6 years later. Very positive. My partner has been taking Abiraterone with Prednisolone (steroid) for the last year. He has a monthly blood test to keep an eye on liver function etc. These medications run along side a Zoladex three monthly HT implant. He seems to tolerate this combination quite well, the only obvious side effects are fatigue and hot flushes. Abiraterone is supposedly a very good drug for extending life, it does have a long list of side effects like all drugs, but it seems to work well at the moment. A down side is that he must take the Abiraterone on an empty stomach, so he sets the alarm at 6am. I think this is more of a problem for me than him though!
my husband has been on Abiraterone / prednisone since 19th July . He also had his 1st Prostap injection 25th June . His PSE was initially 14 in March and as off today it’s down to 1.3 . He is due another MRI and will see the Oncologist 10th October when we will know if he’s in a curative pathway if the lymph nodes are not involved . He will also have RT either way .
side effects : evenings when he goes to bed he gets hot and it’s duvet on duvet off . other than that he is pretty fatigued but still walking up to 10 miles a day. I’ve noticed he’s is getting a bit podgy round the middle but his weight has stabilised as he lost a bit probably worry at the beginning. I read a lot too and it’s quite frightening what the side effects can be . Will see what happens when he gets his next Prostap 17th Sept. Fingers crossed it will remain limited side effects . Hope all goes well for you both .
He does suffer now with constipation which he blames all the medication . He has fresh pineapple every day and that’s helped lots .
Thanks for this Liz. I like the idea of pineapple! We shall see how it goes in the next few weeks. We have v good back up from the Oxford hospitals, so any extreme reactions will be dealt with through the Triage system.
I do hope your husband does well. Over 6 years ago Rob was not expected to live much more of a year. Thanks to the treatment along the way, he has really done very well.
It isn't easy. Rob is remarkably stoic which helps. But I'm not looking forward to this stage. We have collected the medication but have decided not to start until he has had his online consultation with the Churchill Hospital pharmacist on Tuesday.
We met the pharmacist the day we pick up the medication . He sat us down and explained all about the common and uncommon side affects. then asked us if we needed him to go over everything again . He also supplied him a steroid card for OH to carry in his wallet . I must admit he was excellent and reassuring saying call the hospital pharmacy if in doubt .
I've been on Abiraterone (with prednisolone and omeprazole) and prostap since November last year (so coming on 10 months), main side effects are fatigue, hot flushes and weight gain. But PSA is down from 42.8 to 0.12. I do a lot of gym work to try and combat the fatigue, and take frequent naps during the day.
it’s nice to see your PSE is 0.12. My OH started his July and his PSE is down to 1.3 from 14 . So it’s also going in the right direction . It’s too early tk sag about his weight gain but he is very fatigued . Fortunately limited hot flushes but who knows what his next Prostap injection 17th Sept will bring . take care & best wishes
