Possible Enzalutamide treatment

User

Posted 05 Oct 2019 at 12:22

Hi all.

Not posted for a while as things were going well but now things are turning for the worst. After RP, RT Chemo and 3 years Zoladex I thought things would be kept in check but not to be.

Just had my latest 3 monthly check and PSA now rising (3.6 from 0.6, 4 months ago) seemingly my Zoladex injections are now failing after 3 years.

Just wondering how others have coped with Enzalutamide. Going for another PSA test along with bone and CT scans before decision is made.

Sandy

User

Posted 08 Dec 2019 at 13:44

Just a wee update.

Saw the oncologist last Friday after 4 weeks on enzalutamide and what a surprise. PSA down to 1.6 from 5.4, I didn't expect such a good response in such a short period of time.

Hopefully it gets even better. So far no side effects apart from heavier flushes but can cope with that. I did have a bad experience last Friday though, took the enzalutamide tablets along with my blood pressure meds in one fell swoop with no food and rushed out the house to get to the hospital for the appointment. Soon found out that this was a bad mistake as I felt spaced out for the rest of the day and took to my bed, wasted day.

Heading to Alicante this Saturday for a few days, my OH needs a break too.

Merry Xmas when it comes to all you guys out there.

Cheers

Sandy

User

Posted 05 Oct 2019 at 16:36

I am sorry to see this update - that's a big rise in a very short time. Generally, men here seem to cope very well with enza as it doesn't bring with it many additional side effects.

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

User

Posted 05 Oct 2019 at 18:01

Hi Sandy,

I was on enzo only for 6-8 months. Had minimal SE’s and it kept PSA in check for a while. Was taken off it once onco thought there was other issues.

Steven

User

Posted 05 Oct 2019 at 19:32

Sandy

Sorry to see the news about your PSA. I don't understand all the Abi and Enzo treatments but I hope they find something that works for you.

Thanks Chris

User

Posted 03 Nov 2019 at 10:07

Hi Chris,

Yep it has been a wee while but apart from RT and Chemo everything had been going along not too bad with my PSA being undetectable.

Things have now came to a crossroads with regards work as my family have told me to retire, turn 60 next June, and seriously thinking of it now.

Good to hear from you mate, you certainly have made your mind up over the past couple of years regarding treatment and in a way have taken control of your own destiny. Hope all goes well l in the future for you. I've been told that PSA doesn't really mean much now.

Still expect to be here for a good few years yet. I'll post again when I start the trial.

Cheers

Sandy

User

Posted 03 Nov 2019 at 10:44

Chris,

Meant to add I was T3N0M0 at diagnosis.

Best of luck for the 15th mate.

Sandy

User

Posted 06 Nov 2019 at 13:10

Sorry to hear that. Here’s hoping the Enzo works for you mate

If life gives you lemons , then make lemonade

User

Posted 06 Nov 2019 at 16:57

I think the treatment is very similar to aberatitone in the way it works. My oh took this for 21 months and it worked really well with little side effects but has now stopped being effective but some men have been on it for a lot longer. Good luck.

User

Posted 06 Nov 2019 at 18:48

Sanders

Sorry to hear you didn't get on the trial, hope your new treatment is effective.

Thanks Chris

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User

Posted 05 Oct 2019 at 16:36

I am sorry to see this update - that's a big rise in a very short time. Generally, men here seem to cope very well with enza as it doesn't bring with it many additional side effects.

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

User

Posted 05 Oct 2019 at 17:25

Hi Lynne

Thanks, I know that's why I'm a bit concerned about it. I'll wait until the scans are done before I decide to finish up work.

Cheers

User

Posted 05 Oct 2019 at 18:01

Hi Sandy,

I was on enzo only for 6-8 months. Had minimal SE’s and it kept PSA in check for a while. Was taken off it once onco thought there was other issues.

Steven

User

Posted 05 Oct 2019 at 19:32

Sandy

Sorry to see the news about your PSA. I don't understand all the Abi and Enzo treatments but I hope they find something that works for you.

Thanks Chris

User

Posted 02 Nov 2019 at 18:26

Hi all,

Met oncologist yesterday and it was a mixed bag. CT scan was good as no organs affected but unfortunately bone scan has shown up two further areas as being affected, pelvic area spots have gotten bigger and now in spine and cheek bone. PSA is now at 5. They have asked if I wish to go on a trial, will meet the professor in charge of trial hopefully in a couple of weeks to discuss. The plan will be to have 4 Enzalutamide tablets a day alongside a Talazoparib tablet (or placebo). Has anyone out there been on this trial, it would be good to know.

Cheers

Sandy

User

Posted 03 Nov 2019 at 08:48

Hi Sandy , I thought I’d not seen you around for a while as we joined roughly at the same time. My surgery was June 2015 and yours was Oct. I know we were both G9 but I was also T4N1M0. Were you M0 too ??

I’m so sorry to hear of the predicament you are in in just this timescale. You’ve basically had everything but the kitchen sink. I simply don’t understand this cancer and wish I knew more so that my choices were well informed. During the same time scale I’ve simply had RP and fully recovered from it and yet refused all other treatment. Yes my psa is mental but each and every six month scan ( PET , CT , Bone ) has shown nothing. I’ve just had repeat scans last week and get results on 15 th Nov. I’m not a fool but sometimes feel like it’s all been a huge mistake.

Of course it hasn’t been I’m sure , and I’m in for awful news sometime soon , but I’m glad I’ve stuck to my guns.

I hope you get your trial and very best wishes

If life gives you lemons , then make lemonade

User

Posted 03 Nov 2019 at 10:07

Hi Chris,

Yep it has been a wee while but apart from RT and Chemo everything had been going along not too bad with my PSA being undetectable.

Things have now came to a crossroads with regards work as my family have told me to retire, turn 60 next June, and seriously thinking of it now.

Still expect to be here for a good few years yet. I'll post again when I start the trial.

Cheers

Sandy

User

Posted 03 Nov 2019 at 10:44

Chris,

Meant to add I was T3N0M0 at diagnosis.

Best of luck for the 15th mate.

Sandy

User

Posted 06 Nov 2019 at 12:57

Totally gutted today.

Just been told that I've not been accepted for the trial because I had Zoladex injections prior to Chemotherapy last year. My new Oncologist hadn't read my notes properly.

Start Enzalutamide this Friday now.

Ah well onwards and upwards.

Cheers.

User

Posted 06 Nov 2019 at 13:10

Sorry to hear that. Here’s hoping the Enzo works for you mate

If life gives you lemons , then make lemonade

User

Posted 06 Nov 2019 at 16:57

User

Posted 06 Nov 2019 at 18:48

Sanders

Sorry to hear you didn't get on the trial, hope your new treatment is effective.

Thanks Chris

User

Posted 08 Dec 2019 at 13:44

Just a wee update.

Saw the oncologist last Friday after 4 weeks on enzalutamide and what a surprise. PSA down to 1.6 from 5.4, I didn't expect such a good response in such a short period of time.

Heading to Alicante this Saturday for a few days, my OH needs a break too.

Merry Xmas when it comes to all you guys out there.

Cheers

Sandy

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