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Update (from original PSA of over 6000)

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User
Posted 13 Nov 2018 at 16:42

My husband was diagnosed completely out of the blue (with no symptoms) with a PSA over 6000 and Gleason 9 in October 2016.

Since then he has had chemo and Zoladex and the lowest psa he reached was 1.1

Psa is now 3.7 with a doubling time of about 3 months and the oncologist thinks it is time to move onto Arbiraterone or Enzalutamide so we need to have a think about which one might be better.  Fingers crossed whichever one he ends up on is helpful and gives some extra time x   

User
Posted 13 Nov 2018 at 19:52

Hi Sally,

I'm not to knowledgeable on this, but I've read good things about ab and enz.  Wishing you and your hubby all the best and here's to a good few years yet.

User
Posted 14 Nov 2018 at 23:02
I’ve heard more good things about abiraterone keeping things stable.

Ido4

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User
Posted 13 Nov 2018 at 19:52

Hi Sally,

I'm not to knowledgeable on this, but I've read good things about ab and enz.  Wishing you and your hubby all the best and here's to a good few years yet.

User
Posted 14 Nov 2018 at 19:14

Thank you 

User
Posted 14 Nov 2018 at 23:02
I’ve heard more good things about abiraterone keeping things stable.

Ido4

User
Posted 14 Nov 2018 at 23:15
Hi Sally

I'm so sorry to find you here but at least you have many folk who will advise and help you.

I started on a Stampede Trial 4 years ago with both abiraterone and enzalutamide plus the Prostap.

Abiraterone didn't agree with me so it was stopped after about one month.

I've now been on enzalutamide for nearly 4 years with my psa running at around .06. I started with a high of 235.

I have minimal side effects and it seems to be doing the trick so far.

I know the Trial with abiraterone is now finished and has yielded good results. The Trial with enzalutamide is continuing and hopefully that too will yield good results.

That's my experience of the drugs but of course everybody is different.

I wish you well with your decision.

Paul

User
Posted 14 Nov 2018 at 23:26

Thanks Paul - always really useful to hear other people’s experience. 

I think I read that even outside of Stampede if you start on either arbiraterone or enzalutamide and have problems within 3 months you can switch the other which feels like a useful safety net.

Glad the treatment has been working well for you. 

 

 

User
Posted 15 Nov 2018 at 16:20
Sallyyy, my experience of abiraterone was that it was side effect free and gave me three years nearly before it began failing. Never had enzalutamide, so can't help on that.

AC

User
Posted 15 Nov 2018 at 16:22

Thanks AC - always good to get positive feedback :-) 

User
Posted 15 Nov 2018 at 19:52
The onco usually has a good feel for whether abi or enzo is going to be the better option, based on things like any other medical conditions.

It is true that if he can’t manage the side effects of one he should be able to swap to the other (within 12 weeks of starting) but if abi fails, you can’t swap to enzo and if enzo fails you can’t swap to abi.

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

User
Posted 15 Nov 2018 at 20:27

Thanks Lyn - at the moment the onco has left my husband to think about which of the two he would prefer (there are no particular contraindications or benefits of either in his case so the onco has said there isn’t really a strong medical reason to go for one over the other.) we’ll keep reading up on it all reasy to discuss at next appointment. 

 
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