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Enzalutamide experiences

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User
Posted 22 Mar 2017 at 21:02

Hi All,

I have been put on Enzo as from today after a rise in PSA from 6.5 to 8.5 now. I have mets in 1 place on my spine.My Onco says to continue with 6 monthly Decapeptyl hormone injections

My main question is does it fail inevitably? and if so how many months / years?

I know I should be grateful to be given this expensive drug (and I am) but isn't it just prolonging the inevitable journey on to Chemo?

 

Thanks for reading - I just feel I am now in unchartered waters and quite frankly more than a bit scared.

 

Alan

User
Posted 20 Apr 2017 at 00:56

Glad the back pain has reduced Alan, and a PSA fall brings you some breathing space. We all need someone to catch us when we fall ... Sounds like you have a soft landing to be thankful for. Keep on keeping well.

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

User
Posted 20 Apr 2017 at 08:23

Hi Alan
I was diagnosed in Dec2014 with a psa of 199 and started with HT, Enzalutamide in Jan2015 by which time my psa was 235. I was a T3 N0M1
Within 3 months my psa dropped like a stone and for the last 2 years has been around .04.

I have not had any other treatment since dx (apart from a month or so on abiraterone which upset my stomach so badly it was stopped)
Ive put on weight, my energy level is lower and I have uncomfortable hot flushes.
It's a small price to pay.
How long the Enza will continue I don't know but I'm aware it won't go on forever then it's RT or more likely chemo neither of which I relish.

I wish you all the best and hope all goes well.

Paul

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User
Posted 22 Mar 2017 at 21:32

Originally Posted by: Online Community Member

My main question is does it fail inevitably? and if so how many months / years?

Yes it will fail at some point. When it fails varies from man to man. Enzo worked for me for 22 months with only minor side effects, see my bio by clicking on my name.

Originally Posted by: Online Community Member

I know I should be grateful to be given this expensive drug (and I am) but isn't it just prolonging the inevitable journey on to Chemo?

It is but isn't an extension to quality of life well worth having? BTW chemo isn't that bad.

David

User
Posted 22 Mar 2017 at 22:59
Trouble with posting 😞

Edited by member 22 Mar 2017 at 23:03  | Reason: Not specified

User
Posted 22 Mar 2017 at 22:59
Thanks for your reply David.

My apologies if I seem ungrateful - of course the Enzo extends the quality of life and life itself.

The idea that I am on this treatment so soon has come as a shock and will take getting used to.

Having read your profile with interest you seemed to have coped well with Enzo. Hopefully the side effects won't be too bad in my case.

All the best with the chemo

Alan

User
Posted 22 Mar 2017 at 23:45

There seems to be an unfortunate group for whom nothing works for very long while others have years of control on the same drug - if I had millions of pounds for research, that is where I would direct it. Enzo may be delaying chemo but if it works for a sustained period then a) there is a good chance that chemo would do enough damage for HT to be successful a second time round and b) something new may have come along by the time you get to that stage.

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

User
Posted 19 Apr 2017 at 08:50

Some good news - after taking Enzo for a month my PSA has now dropped from 8.5 to 2.4. No side effects as such except for an unexplained spotty rash over my arms, legs, tummy.

I am physically in good shape, no pains (other than those associated with creaking jointshttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif). Had 1 week's radiotherapy on my spine which helped with back pain.

I am in a good place so thankful for that. I am also grateful for all the advice and experiences everyone gives on this site - - it has helped me to come to terms with all of this.My partner Pam is a rock for me especially during my dark moods - she catches me when I fall ( if that resonates with others)

 

Alan

User
Posted 20 Apr 2017 at 00:56

Glad the back pain has reduced Alan, and a PSA fall brings you some breathing space. We all need someone to catch us when we fall ... Sounds like you have a soft landing to be thankful for. Keep on keeping well.

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

User
Posted 20 Apr 2017 at 08:23

Hi Alan
I was diagnosed in Dec2014 with a psa of 199 and started with HT, Enzalutamide in Jan2015 by which time my psa was 235. I was a T3 N0M1
Within 3 months my psa dropped like a stone and for the last 2 years has been around .04.

I have not had any other treatment since dx (apart from a month or so on abiraterone which upset my stomach so badly it was stopped)
Ive put on weight, my energy level is lower and I have uncomfortable hot flushes.
It's a small price to pay.
How long the Enza will continue I don't know but I'm aware it won't go on forever then it's RT or more likely chemo neither of which I relish.

I wish you all the best and hope all goes well.

Paul

User
Posted 20 Apr 2017 at 19:36

Great news Paul. I think enzo is not long away for me hope I get the same response when I get there.

User
Posted 04 May 2017 at 20:55

Thanks Lynn, Paul,

I appreciate your warm words.

Now into my 6th week on Enzo the only side effect I can put my finger on is increased tiredness. On my last visit to the specialist he said the PSA is likely to drop even further so that gives me great expectations for this drug. Genuinely hope it's a success for me - PSA test tomorrow so fingers crossed.

Good luck to those who haven't started it yet if you need it (Paul (Yorkhull)) and continued success for you Paul (Healey)

Alan 

 

 
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