Hi everyone. My Dad who was diagnosed with Stage 4 PCa 14 months ago had an appointment with his oncologist yesterday and his PSA has risen from 5.4 to 17. He is starting on Abiraterone hopefully within 2 weeks as they need to wait for the funding to be approved. A recent scan shows that the cancer has spread in his ribs, but fortunately no organs are affected. He is not sure when his next appointment will be, but is it normal for them to wait and see how he responds to the Abiraterone before they look for other treatment, e.g., more chemo (he already had docetaxel last winter), internal radiotherapy? When might his PSA test next be?
I have done some reading around the side-effects of Abiraterone and they don't look great. I've read about low potassium levels - will they arrange for his levels to be monitored or are these blood tests he will need to arrange through his GP? Is it worth taking a potassium supplement alongside it? Does anyone have any advice about managing the side effects generally?
Does this also mean he is 'hormone resistant' because he has stopped responding to the standard HT? Or is it only 'hormone resistant' if he stops responding to the 2nd gen HT? I am a bit confused about the terminology.
Thank you for any help on these questions about the Abiraterone/treatment side of things. I had planned to be with him in the appointment yesterday but couldn't make it last minute, though you only think of all these questions after you have left of course!
I have recently started on Abiraterone and Olaparib
the side effects are pretty much what you read about, fatigue and muscle ache are the worst on top of the fatigue from the three monthly HT injections(Double fatigue -Yay!)
the effects of the steroids that you have to take are worse for me as I’m also diabetic and they push your blood sugars higher than you want. It’s bizarre when you don’t eat and can see your blood glucose going through the roof. I’ve been well controlled for years and this is really frustrating me
i was told that the blood tests will be done at the GP a couple of days before I have to pick up the next prescription from the local hospital as the local chemist dont deal with these drugs
i take a daily multivitamin tablet just in case and if there are any issues they will pick them up on the blood test
The cancer is finding another way to get its food so what they are doing is give your dad the Abiraterone (plus steroid to reduce the side effects) which is a stronger way to stop testosterone production by the cancer cells, the testes and adrenal glands. It will be given in addition to the injection/ implant which is still doing its job if your dad is at castrate level - they might check his testosterone level to confirm this. Hormone resistance is when the cancer continues to grow whilst you are on hormone therapy so what the doctors are doing is trying to use the Abiraterone to knock it back again. If he only has oligo metastases (1-5) they might consider a targeted radiotherapy -SBRT to those areas. Another option for dealing with bone mets is Radium 223 which is a targeted radioligand therapy. Some men respond well to Abiraterone for bone mets so I can't answer the question as to whether they will try this first without additional treatment at this time. At this time I doubt that they will ask your father to undergo more chemotherapy -we were told that my husband would probably try different therapies before repeating Docetaxel or another chemotherapy.
All the drugs come with a long list of possible side effects but with the Abiraterone I would ask for monthly blood tests as it is known to possibly affect the liver and kidneys and increase the triglycerides. We have a member whose husband has been on Abiraterone for a while so I have tagged her in BarryW as she can answer your questions better than me on side effects and monitoring. You also might find this link useful. On this thread she says her husband has a banana a day to keep the potassium levels up. If you listen to the video in this link it gives you an idea on the question of prognosis.
Stage 4 - Also excellent discussion about Hormone treatment.
I also refer to a video on treating advanced prostate cancer which tells you what is available and when to use it.
https://youtu.be/-RVVq0uDAEE?si=xx47SP3Waugh9tZj
Once you have watched the links then come back with any questions and we will try and help.
Hi skye_saturn
As Alwayshope says my other half has been taking Abiraterone for a couple of years, it’s an excellent drug and hopefully your dad will do well on it. In a way Mr BW is lucky to of taken it from the very start of diagnosis as he hasn’t experienced an up and down of PSA after treatment . Abiraterone with Zoladex and prednisone has forced any stray micro mets completely down from the get go and into a deep sleep. His consultant thinks it’s an amazing drug and knows of someone that has been taking it for 15 years ( from early trials) yes it has side effects - mainly fatigue, but your dad would probably be experiencing this at this level anyway and he will be monitored with blood tests. When your original PSA is in the high hundreds there tends to be no cure, but what there is are excellent treatments to hold it back and Abiraterone is one of those excellent treatments like Enzalutamide and a couple of other similar drugs. Once your dad gets into a routine of taking his drugs he should tick along nicely. One thing you can do is support him in getting plenty of exercise in his life if he isn't already doing this as it will make a huge difference to the side effects. Yes ! A banana a day is brilliant at keeping the potassium steady. It’s just about doing all the things your body wants and needs now- exercise, eating well and getting a good nights sleep. The drugs will do their job and your dad needs to treat his body well to give it something to fight with. I’ve been obsessed with the Journey of Abiraterone into the mainstream of NHS drugs for sometime. It used to be only available privately and in Scotland NHS as it was so expensive £2.5k a month. But it went generic and only costs £60 Roughly a month now.(a couple of years ago) It’s been ok’d by England and Wales NHS but still seems to be slow at being used, our Consultant said it’s probably a drug contract thing. You say you have to wait for funding? yet it’s probably only £15 a week if what our consultant says is correct. This is a drug that is so good that it should be available to anyone that wants it . Make sure your dad gets it. He needs to give it a chance to settle in and he should be fine, and if it doesn’t agree with him he could try Enzalutamide or one of the other similar ones.. It sounds like he’s having really good treatment, try not to worry, direct your energy into getting him as body healthy as you can so he has lots of energy.
Best wishes to you both
L x
hi
i've been on abiraterone for 5 and a half yrs with zoladex , its a good drug my cancer is very aggressive ! yes the side effects are hard to take sometimes but on the whole i'm doing o.k still managing to work !!
hope its as good for your dad as it has been for me .
keep positive
Hi,
I've been on Abiraterone for a year, I try to eat a banana a day to keep the potassium at check. From the side effects the fatigue is the hardest to handle for me, but I take a lot of rest and go to the gym twice a week to try and control that. It does work through as my PSA is now below 0.1.
Good luck with the treatment.
G
Hi, my husband was on Abiraterone and Prednisolone with Prostap for a year. He has been lucky in that the only side effects he noticed was that his hands were slightly puffy and he had some hot flushes, although he'd already been having the latter from the Prostap injections. He didn't experience any fatigue, brain fog etc.
After a while they started prescribing Omeprazole to offset any stomach irritation - we think they should have done that at the start and just forgot.
He had to have a BT every month at first to cancel out kidney and liver problems but after only a few months it went back to just before his 3 monthly oncology appointment. He had to keep a check on his supply as Abiraterone was only dispensed from the hospital, not on repeat prescription from our GP, and couldn't have a further one until he'd had a recent BT.
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