My Journey

Hi MichaelR

Welcome to our prostate cancer family sorry that we have had to meet in these circumstances but nevertheless it is great to meet you.

My PSA was 1000+ last June and I was put straight onto Hormone Therapy (Apalutamide Tablets and Injections)

Lucky my PSA dropped to 0.2 and has since gone up slightly but my consultant seems to be very happy with this & is happy for me to stay on the current treatments.

Hopefully you will receive many more members who have been through your current treatments and will be able to offer you lots of help and advice.

Please please let me know if there is anything that I can help you with????

Prostate Worrier.

Hi MichaelR .

Welcome to the group. Any reduction in PSA is good. If you have been on Bicalutamide only then it usually shows a drop in PSA but not always. Once the injections/ implants are added into the mix then castration levels should be reached in 7/8 weeks and can reduce the PSA even further. Abiraterone is even more potent at blocking testosterone production and you would hope that the PSA levels will drop to below 0.1. Abiraterone is usually taken with a steroid to ameliorate some of the additional side effects that it can have such as increasing blood pressure and a greater tendency to push you towards diabetes so make sure that you have regular blood tests and possibly invest in a blood pressure monitor. My husband was on Enzalutamide, which is similar to Abiraterone, and did not experience any additional side effects compared to when he was on the injection/implant on it's own but has no personal experience in taking Abiraterone. I am sure that others who are on it will be along to give you their experiences.

The Gleason 9 diagnosis is pushing the more aggressive treatment and adding RT into the programme will kill off the cancer cells.

Fatigue is a main side effect of most of the treatments and the best way to combat it is with exercise so try and get as fit as possible. If you want tips on how to deal with some of the other side effects you might experience then please don't be afraid to ask as someone is bound to have been there, done that, and worn the T-shirt.

I have tagged in BW as I know her husband is hopefully coming to the end of his hormone therapy and he was on Abiraterone. She has put their journey on her profile page which you can read by clicking on her avatar.

Morning , 

Hi AW and MichaelR

Yes my partner has been taking Abiraterone and it works very well at keeping his PSA down. He will be taking it for life or until it stops working  for him and then will move on to something else. His consultant feels it’s an excellent drug to take because of its manageable and low side effects OH does have fatigue and finds he is more tired in the day, we thought it was due to Abiraterone, but was told the zoladex HT implant was the main cause of that. I am pushing for him to come off it after two years and have a break and then go back on it again (intermittent use) because there have been trials suggesting that if you do this you can then use the drug for longer before your body starts to reject it, but his consultant thinks it makes no diffference either way . He believes there is a lot of mileage long term and because low side effects it’s unnecessary. Reading side effects you will find heart and liver can be affected in some cases .So your steroids are there to counter balance any problems. Blood tests will monitor any changes, Make sure you  have “liver function “ included in the blood tests He also has a banana a day because it can affect your potassium absorption. Overall a good exercise routine is good to keep bone healthy and building back muscle strength that can be lost with treatments. I hope you get on well, it’s a top drug to take and if you find you have problems with it you can just move over to Enzalutamide. 

Best wishes L

Good Morning MichaelR 

Another warm welcome to the online Prostate Community - although I am sure you would rather be elsewhere.

I notice you are also a fellow member of the Gleason 9 club - but at least you have your diagnosis and are starting on your treatment journey. I am a T3aN0M0 with a spread to my pelvic lymph nodes but as I started my personal journey 28 months ago I have followed a different course of treatment (not abiraterone) however the good news is it's a curative pathway. You can follow my journey by clicking on my avatar.

You have had a couple of cracking replies from Alwayshope and BW . Feel free to ask any further questions, however trivial they may be. Everyone on the Community is more than happy to help.

Can I ask that you fill in a few details on your profile Gleason Score, Initial PSA - TNM staging etc. this helps us help you and we don't have to ask the same questions. To do this on your home page, click on the chair - top right, then "profile" and then "edit".

Many thanks and best wishes - Brian.

Thanks Prostate Worrier - I'm glad to see you PSA has come down so much

I'm seeing my oncologist again on Thursday - when I guess I'll be put on Abiraterone. 

Thanks for your advice

Hi L

Thank you for your very helpful message. It seems I am the same treatment plan as your husband. I'm seeing my oncologist again on Thursday, and will certainly take into account some of the points you have brought up when I ask her questions about what's next. 

Best wished for you too

Hi MichaelR

No probs my friend yes it was great to have the PSA drop down so much (unexpected)

Yes please let me know how things go on Thursday with your oncologist if you don't mind???

Prostate Worrier.

Yes, will do