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Seven years on Enzalutamide and Prostap

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User
Posted 06 Oct 2021 at 19:34

Has anyone else had long term exposure to enzalutamide?


I am now closing my 7th year since I joined the STAMPEDE J trial after being diagnosed with PCa with a spread to left hip. My psa at start of the trial was 235.


However after 7 years with my psa still at. 03 the side effects are are very wearisome and I am again considering having a break from medication. I want some quality of life back and I want to stop the medication affecting me.


However I'm scared stiff what might happen. My PCa is currently dormant, is it going to start up again once I stop taking the medication.


Has anyone else been through this and could they share their experiences

User
Posted 06 Oct 2021 at 23:42

hi,


That's impressive, 7yrs on hormones.  I can't answer your question.  I assume you looked up hormone holiday. Usually a break until it starts rising again.  A US   oncologist on YouTube said a holiday doesn't usually extend it just gives a break which seemed odd.  The US seem to use hormones I haven't heard of unless it's just a different name.


All the best, Peter

User
Posted 07 Oct 2021 at 00:40

The proper name is intermittent hormone therapy. I think you would need to speak to the trial team and/or your oncologist though because while stopping normal HT for a while and then starting again is fairly straightforward, I suspect that if you stop the enzalutimide you may never get it again which dramatically cuts down your future options.


Have a look at Topgun on here - he was successful with IHT for a number of years. 

Edited by member 07 Oct 2021 at 00:41  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 06 Oct 2021 at 23:42

hi,


That's impressive, 7yrs on hormones.  I can't answer your question.  I assume you looked up hormone holiday. Usually a break until it starts rising again.  A US   oncologist on YouTube said a holiday doesn't usually extend it just gives a break which seemed odd.  The US seem to use hormones I haven't heard of unless it's just a different name.


All the best, Peter

User
Posted 07 Oct 2021 at 00:40

The proper name is intermittent hormone therapy. I think you would need to speak to the trial team and/or your oncologist though because while stopping normal HT for a while and then starting again is fairly straightforward, I suspect that if you stop the enzalutimide you may never get it again which dramatically cuts down your future options.


Have a look at Topgun on here - he was successful with IHT for a number of years. 

Edited by member 07 Oct 2021 at 00:41  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Oct 2021 at 09:05

Hi Lynne


Thanks for your reply.


Yes my onco did say that if I stopped the enza I could not restart it again later.


What do you mean by if I stopped I would dramatically reduce my future options.


Thankyou for the suggestion re top gun I'll take a look


 


Paul

User
Posted 07 Oct 2021 at 17:18
Well, if you stop enza and then can't get it again in the future, you probably won't be allowed to have abiraterone or apalutimide either. That leaves you with bog standard HT (which presumably has already been identified as not enough to control the cancer?) and chemotherapy. Getting onto trials may also be difficult as many exclude men who have previously had enza or abi.

You might be able to get abi or apalutimide privately but I think they are somewhere in the region of £2.5k per month.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Oct 2021 at 18:50

Lynne


Thanks for your answer.


I started be 7 yrs ago with prostap and added abitaterone plus enzalutamide. The abiraterone was stopped after my blood liver reading shot up so I know abbi will not be available later. However the prostap and enzalutamide still seem to be working and one would hope that I could restart both if they are still working if I had a break.


But I’m sure you are right and only HT would be available.


Thanks you your time to answer.


Paul


   


 

User
Posted 11 Oct 2021 at 10:31

Hi Paul,


Your regular posts are usually so positive are you really sure you want to start changing what's kept you going for 7 years?


Don't rush into anything hasty.Take a while to think about all the possible pros and cons of abandoning what's kept you going  all this time.


Stay strong.


Regards


Norm


 


 

User
Posted 08 Jan 2022 at 18:23

Hello I was reading these posts with interest because I'm on Enza and have been for the past 18 months with psa undetectable but huge brain fog and memory problems becoming more apparent. One of the nurses suggested taking a break so I started investigating and came across a recent  article which indicates Enza may be restarted again after a break


I cant get a link to.the article but if you search for  Intermitant use of Enzalutimide you will find it .


A small trial undertaken by one of our Cornish hospitals .The only reason not to restart would be cost or failure of treatment .


 

Edited by member 08 Jan 2022 at 18:27  | Reason: Not specified

 
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