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Abiraterone experiences

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User
Posted 09 Oct 2018 at 19:46

My Dad finished ten rounds of chemo about six weeks ago. PSA went down to 4.5 during chemo and is now 8.0. He is going to start Abiraterone on Thursday all being well. He is disappointed the PSA didn’t hold but we are thankful he has the opportunity to try Abi. So I’m looking for anyones experiences of this treatment so that I can pass them onto dad (hopefully encouraging experiences so that he has some confidence). Any comments gratefully received. Pen.

User
Posted 21 Oct 2018 at 16:27

My diagnosis was T4n1m1a, I was 49 on diagnosis.

After early chemo my PSA dropped from 342 to 1.

sadly after only a few months it increased to 4.

i started abiraterone in January 2016, my next blood test is tomorrow but my PSA is at 0.07 and I have been on abiraterone now for 33 months.

i don’t think I have had any side effects from the abiraterone, the side effects I have had are more from the Zoladex, moobs, hot flushes, sore joints, mood swings. They get progressively worse but all manageable!

i am now 53 and I always ran a bit but in the last 4 years I have run ultra marathons and 1,000s of miles all over the world raising funds for Prostate Cancer UK, the Sahara, the Arctic etc I walked 191 miles in a week two weeks ago and am off to Cambodia to run 220k in a few weeks. I say this because it shows that you can do things (if you are lucky) and abiraterone can last years. I know not everyone has been as fortunate but for now believe that it should work and life can go on. 

Hope that helps

Kev 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 10 Oct 2018 at 17:40
Pen, I had nearly three years on abiraterone. It was a doddle. No side effects. Just disappointing that it failed eventually. Many men don't benefit for as long as I did but some stay on it for longer. I hope your Dad turns out to be one of those. He should have no doubts about trying it!

AC

User
Posted 18 Oct 2018 at 13:18
Pen , I`ve been on Abiraterone now for nearly 6 months . This is in addition to Zoladex and 2 x daily 5 mlg of Prednisolone .

I do feel tired in the evenings - but i guess I was before diagnosis . No nasty side effects , I do exercise twice a day and drink more water than I did before by choice . I have a appetite like a horse in the afternoons , eating anything I could get my hands on ! I didn't pile on the pounds but soon released this would not be good long term . When I now get the urge I eat fruit and drink water . Mt wife says my overall physique has improved . I had to have blood tests every 2 weeks initially to ensure all was well and in particular my potassium levels were ok , so I do eat meals high in potassium - but all good and I`m now on tests every 2 months . Hope all goes as well for Dad as it is for me .

User
Posted 20 Oct 2018 at 00:04

My oh is also on this treatment ( round 10 ) with zoladex injection every 3 months and has been doing well on it. No side effects and eats and sleeps well as well as being pretty active. It seems to be a good treatment so hope all goes well for you and your Dad.

Regular check ups are vital and bloods are tested every month for any abnormalities. You are very well looked after..

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User
Posted 10 Oct 2018 at 17:40
Pen, I had nearly three years on abiraterone. It was a doddle. No side effects. Just disappointing that it failed eventually. Many men don't benefit for as long as I did but some stay on it for longer. I hope your Dad turns out to be one of those. He should have no doubts about trying it!

AC

User
Posted 18 Oct 2018 at 13:18
Pen , I`ve been on Abiraterone now for nearly 6 months . This is in addition to Zoladex and 2 x daily 5 mlg of Prednisolone .

I do feel tired in the evenings - but i guess I was before diagnosis . No nasty side effects , I do exercise twice a day and drink more water than I did before by choice . I have a appetite like a horse in the afternoons , eating anything I could get my hands on ! I didn't pile on the pounds but soon released this would not be good long term . When I now get the urge I eat fruit and drink water . Mt wife says my overall physique has improved . I had to have blood tests every 2 weeks initially to ensure all was well and in particular my potassium levels were ok , so I do eat meals high in potassium - but all good and I`m now on tests every 2 months . Hope all goes as well for Dad as it is for me .

User
Posted 20 Oct 2018 at 00:04

My oh is also on this treatment ( round 10 ) with zoladex injection every 3 months and has been doing well on it. No side effects and eats and sleeps well as well as being pretty active. It seems to be a good treatment so hope all goes well for you and your Dad.

Regular check ups are vital and bloods are tested every month for any abnormalities. You are very well looked after..

User
Posted 21 Oct 2018 at 16:27

My diagnosis was T4n1m1a, I was 49 on diagnosis.

After early chemo my PSA dropped from 342 to 1.

sadly after only a few months it increased to 4.

i started abiraterone in January 2016, my next blood test is tomorrow but my PSA is at 0.07 and I have been on abiraterone now for 33 months.

i don’t think I have had any side effects from the abiraterone, the side effects I have had are more from the Zoladex, moobs, hot flushes, sore joints, mood swings. They get progressively worse but all manageable!

i am now 53 and I always ran a bit but in the last 4 years I have run ultra marathons and 1,000s of miles all over the world raising funds for Prostate Cancer UK, the Sahara, the Arctic etc I walked 191 miles in a week two weeks ago and am off to Cambodia to run 220k in a few weeks. I say this because it shows that you can do things (if you are lucky) and abiraterone can last years. I know not everyone has been as fortunate but for now believe that it should work and life can go on. 

Hope that helps

Kev 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 21 Nov 2018 at 14:53
Just had the the call from my Oncologists to say that even with advanced PC I should now have a months worth of radiotherapy .

Apparently the latest information from the Stampede report is this treatment is now recommended after early diagnosis ( mine 8 months ago ) . I have no real nasty side effects from the hormone therapy Abiraterone / Zolodex and am advised the radiotherapy is further precautionary treatment .

Anyone else having RT with advanced PC ?

User
Posted 21 Nov 2018 at 16:18
It was a standard treatment in my case where the PCa was thought to be confined to the prostate. Yours had escaped to the spine so not sure why RT should be suggested, unless past treatment has eradicated mets.

BTW this thread is about abiraterone effects and was Pen's. Shouldn't you have started a new thread for your own experiences?

AC

User
Posted 25 Nov 2018 at 21:57

Hi what was your Gleason . My  partner is 9, the cancer has spread to his lymph nodes between his chest and tummy.  They said they would not radiotherapy. 

User
Posted 25 Nov 2018 at 22:47

Originally Posted by: Online Community Member
Just had the the call from my Oncologists to say that even with advanced PC I should now have a months worth of radiotherapy .
Apparently the latest information from the Stampede report is this treatment is now recommended after early diagnosis ( mine 8 months ago ) . I have no real nasty side effects from the hormone therapy Abiraterone / Zolodex and am advised the radiotherapy is further precautionary treatment .

Anyone else having RT with advanced PC ?

 

The research subjects were on arm H of the stampede trial; Stampede is now up to arm K or L I think? They haven't actually published the full results yet but there has been a news alert on it ( http://www.stampedetrial.org/media-section/news/news-stories/2018/october-2018/m1rt-results/  ) - summary is that men with only a small number of mets might live slightly longer if they have RT but it makes no difference in men with a number of mets. The benefit is estimated to be about 8% more men will live for 3 years or more. 

It may be that your onco just wants to give it a try - it hasn't been approved by NICE yet so s/he may just be running his/her own little mini trial. If that's the case, I suppose the question you want to ask is "do I want to take on the risk of additional side effects (some of which can be quite unpleasant for some men) for the chance of being one of the 8%?" or you could ask your onco to explain why s/he believes that it will benefit your particular case. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Nov 2018 at 09:41

Hi,

We're potentially going down the same route with radiotherapy.

The shows the 8% benefit after 3 years but doesn't yet show how much longer than this the patients with minimal spread will give. In my head if you're killing the known cancerous cells this has got to be of some benefit

Off to hospital now to discuss 

User
Posted 26 Nov 2018 at 11:49

My Gleason score was 7 , so went on Abiraterone , Prednisolone , and Zolodex . The mets are in my lower spine .

However the reason I have posted on this thread is that I was told on diagnosis that the above tablet regime was the most favorable and radio therapy was no go . However in only the last few weeks the Stampede has advised that in conjunction with Abiraterone radio therapy is now given in addition to the above . My OC was a co- author on the report and wanted me to get this treatment without delay as the results were encouraging. The radio therapy is going to be over 6 wks to my prostate .

 
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