I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Still not giving up - Enzalutamide

User
Posted 08 Jan 2019 at 10:42

Hi

I have only just started visiting the site for support again.  My husband has been fighting the fight for some 10 years now! (we had cake with the Oncologist!)  We have been treated by THE MOST AMAZING staff at the Clatterbridge Cancer Centre.  My husband has had every treatment available including Radiotherapy, Abiraterone, Docetaxel, Cabazitaxil and more recently Enzalutamide.  For those who may not know, there is a trial called Re-AKT which is a double blind trial using Enzalutamide together with either a placebo or another drug.  Dave's PSA reduced from over 4000 to 700 in the space of 13 weeks and his alkaline phosphatase levels are back into normal levels from 400+ to 99.  These are brilliant results but unfortunately due to a recent CT scan showing a couple of new lesions, he has been removed from the trial.  This is devastating and we are looking at trying to obtain the drug on the NHS or some other way but the NICE protocols seem confusing about whether it is possible.  Any response to this would be appreciated, but if nothing else, I wanted to say for all of you out there, not to give up hope, Dave has continued to respond to various treatments and is still here.  We know we are getting close to the end of the line, but it's not over yet!!

User
Posted 08 Jan 2019 at 20:07
I am really sorry to read youd update. It seems pointless trying to get the drug once it has failed though, and NICE will not approve it for a second attempt if there is no further demonstrable benefit. The new lesions are more indicative than the PSA in advanced cases.

Would he consider doing chemo again? Sometimes, chemo after enza is highly effective.

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

User
Posted 10 Jan 2019 at 12:08

So sorry to hear this but it does give me hope especially following a conversation with the specialist nurse today who told me that my hubby may not be given abiraterone or enzalutimide because his health is poor!

with love 

Devonmaid xxx

User
Posted 10 Jan 2019 at 19:43
Scooby,

Way back my oncologist spoke of "rechallenging" the PCa with repeated docetaxel. This was after abiraterone and cabazitaxel, so repeated docetaxel is a recognised way ahead. Also lots of our contributors here have had more than the standard six cycles, as I and no doubt your husband had. For good reason, I didn't take that route but I wouldn't hesitate in the future as I found that chemo to be easy to handle (relative to other chemo regimes, that is).

AC

 
Forum Jump  
©2019 Prostate Cancer UK