How long have you taken Abiraterone for?

Hello L (BarryW) 

You know me - i am not on it but my thirst to know made me check.

It was used in clinical trials up to September 2011 when it was approved for general use by NICE.  From what I read it was not always prescribed at the start due to cost (typical!!).

I am sure that someone will have been on it for a while.

Thanks for all your continued support in general throughout the Community.

Best wishes - Brian,

Thanks Brian , 

I really like my partners consultant, but sometimes he says things that leave me open mouthed and then we are out the door before I can question it . I don’t think there will be many people that reply to this, but you never know. 
L

Hi L,

I hope you are both well. Jacob is on Enzulatemide and not Abiraterone but I read in few places that these 2 are working the same way but with different side effects. Saying that, our consultant says Jacob can take it for years and when I asked how may years the answer was it is all in the stars. So, I think basically they cannot tell. But I am sure someone else here will give you better information.

Lots of love

Dafna

I took it from April 2021 to May 2023, so about two years. I stopped because that was then end of my curative intent treatment which also included radiation. 

So my body did not reject it, in the sense that it was still keeping my PSA to undetectable levels. But over the course of those 2 years, and especially in the final 6 months, my body did degrade. But I think it could also have been due to the Prednisone 10mg that I had to take with the Abiraterone.

I had gained about 60lbs (from 165lbs to 212lbs), got so tired even though I kept going to the gym 3 times a week, and every evening my feet we bloated and painful. 

After stopping the treatment in May 2023 it took about 4 months to get my weight back down to 185lbs (I am now 175lbs after a year post-treatment) and my feet stopped hurting about 2 months ago. I've only recovered a portion of my energy and still feel lots of fatigue.

I will need to resume ADT in a week because a met was found in my right shoulder blade. What I find scary is that since I still feel so tired even after a year of not taking ADT, how will I ended up after I resume ADT???

Just hoping that the side effects won't be as bad this time around as before I was on Lupron+Abiraterone+Prednisone whereas I will now be on Orgovix+Xtandi. 

Hi Dafna, 

Yes very similar to Enzalutamide , timings are in the lap of the Gods In think. I’ve been following Jacob’s Progress from your posts,  very full on treatment.  I hope you are both doing well too x 

Lx

Hi Mascouche,

Thank you for answering me about your timeline with Abiraterone, I've read your bio as well and it's really a journey that you’ve had. I totally understand the weight problems with Abiraterone and Prednisone, my partner is in the gym twice a week trying to fight back the extra fat that is determined to lay around his torso with the change in hormones. He's also changed his diet to a high protein and low carb regime that seems to be keeping him steady, but his ratio of muscle (shrinking) to fat (expanding) is changing regardless. It's an epic job to try and keep things under control, he's also very fatigued. His consultant said this is probably more from the Zoladex than the Abiraterone, but I'm not so sure. Like you he's had a problem with the steroids and he's been going up and down with trying to get the dosage right. He doesn't want to take them. Again his consultant says it's a minimal amount and your body actually produces a higher dose of steroids on its own. He has now settled on 5mg a day. It's low and helps with the tiredness.

You seem to have a similar diagnosis to my partner. He had RT last year, full pelvic and lower torso-ribs in a bid to get everything. It did knock him for six and he was exhausted after but he still managed work all through. He was told he would take Abiraterone for life to suppress any metastatic spread. It's now a year later and he seems to be in a really good place, the after effects of the RT have gone. But still the side effects of medication gets him down, he is adapting, but medication for "life" is an adjustment. His next step when it surfaces will be RT again but directed at the metastatic spots individually. RT is a lot better now than it used to be as it can be aimed more directly and precisely. My partners prostate and surrounding area now shows no sign of cancer at this point. It's going to be the wider area that may kick off. So, Abiraterone and Prednisone for 15 years!?  Phew... it's a lot. I guess better with it than without? to be honest if it was 15 plus years I would take it.  Also, the stats are low in information for a man in his 50's at this level as usually this would be expected more in an older man with less miles on the clock to go anyway.  I hope you get your treatment sorted and you manage to get a mix that works for you. Enzalutamide (Xtandi) is also a great drug and hopefully it will suit you better (no steroids either!)

Please keep in touch and best wishes to you and your family 

L 

Hi L, not sure how relevant this is, while in healthcare I looked after 2 guys who had been on Abiraterone, the original version, they were  both in their late 70s and had both been on it over 4 years with no other cancer treatment ever prescribed and was told, " I did palliative care", up until  about a month before i was involved they had been in very good health, but deterioration was swift. L a lot of improvements as to how and when to take it and with what combination of drugs and/or therapies works best, and this was the original, since 2022 generic versions are available, no doubt they will be a more refined version. 

Eddie xx

Thank you Eddie,

All information is very helpful. My partner is taking the generic version alongside Zoladex as a hard hitting combination. It's definitely working well at this point. A lot of prognosis information does come from men that were initially diagnosed later in life so naturally there will be other conditions like diabetes and heart conditions in the mix as well. I guess it will be interesting to see how long a younger man in his 50's and reasonably fit can live with an advanced aggressive cancer. I just can't get my head around being told 15 +years on Abiraterone is possible. We will see I guess, obviously I'm hoping it's true.

Lx

Hi L hopefully you will see, I hope so, sometimes it's hard to be positive, but it's the best way to be and being positive does boost your immune system, I should have said they both died nearly 9 years ago and not of PCa. Anyway I also have a personal interest in T doing well on Abiraterone, PSA on Tuesday and if as expected It's doubled or worse I could be on it soon as well.

Eddie xx

Hi Eddie,

Ah yes 9 years ago is a long time in cancer treatment changes. I bet people will look back at today in nine years time and wonder what the hell we were doing with treatments! Well I hope your PSA is nice and steady with no rise. Let us know how you get on.

Lx