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

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

User

Posted 17 Jul 2020 at 14:45

Hi irun,

I've been positive for the past 5 years, I was originally given a 5 year prognosis. 5 years past and still here too.

Good advice from the missus there, treat every day as a bonus.

Take care back and keep running

User

Posted 18 Jul 2020 at 10:01

Hi Chris,

No worries mate, totally understand. Met my consultant yesterday and gave just received a date for my CT scan already, 30th July, so at least it ain't to far away.

The mets were not there at diagnosis but came later. That's me posted my notice to my work now, been off since last October so decided that now I'm an auld guy, just turned 60, it was time to go.

Good to hear that you've had the good QoL. Looking back I think I've coped well with everything. Kept working upto last October, biggest and saddest thing was the sex side of life but my surgeon did say pick one sex or life so to me it was a no brainer. Like yourself Chris, the s*** was gonna hit the fan sometime.

Good luck for the scans mate.

Sandy

User

Posted 12 Sep 2020 at 22:21

Sorry about the enza Sanders, I read recently that it doesn’t work at all for 50% of men so perhaps 8 months is quite good although you would have much preferred to be in the 2 years + group.

If searching old threads on here for Radium 223, also search for Xofigo and Alpharadin; a few past members were involved in the very early trials and wrote detailed logs here of their experiences.

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

User

Posted 09 Dec 2020 at 10:53

Hi all,

3 sessions of Radium down and so far not too bad. The biggest side effect is increased aches and pains. Been assured by specialist that this is normal and latest bloods are showing the therapy is working although PSA is now at 9.5 but I've been told to forget PSA readings now as it doesn't mean anything anymore. Still its hard not to think about it.

Was going to Lanzarote in early new year for a holiday, managed to get travel insurance/PCR test etc but now the SNP have placed a travel ban on us so insurance would be null and void. Not happy but what can you do, if I stayed in England I would be able to travel.

Anyway enough of my rants, let's hope everyone can have some kind of Christmas with loved ones.

Cheers

Sandy

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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

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

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

User

Posted 17 Jul 2020 at 12:13

Just a wee update, really disappointed today as just been told that enzalutamide has now stopped working after just 10 months. PSA has risen to 2.5 and going up by 1 every 8 weeks. CT scan is being arranged to determine what the next course of action will be.

Been told that I may not be here next year, and if I am then unlikely to be here in 3 years. Totally down, I knew this was coming but hoped for a few more years before it came to this. Oncologist is talking about more chemo or Radium 223, but as she says this is to ease the pain and not a cure.

I've been so upbeat but now t my head is in a dark place. Anyway stay safe all and good luck.

Sandy

User

Posted 17 Jul 2020 at 14:18

Hi Sandy, sorry to hear this. I've looked at your bio and posts and your diagnosis is pretty much identical to mine. Just hope I have a bit more luck, I'm a couple of years behind you.

I hope they find something they can do for you.

Dave

User

Posted 17 Jul 2020 at 14:31

Hi Dave,

All the best for the future. Hopefully you too will get something that can kick this s***, albeit for another few years.

Onwards and upwards.

Sandy

User

Posted 17 Jul 2020 at 14:33

Really sorry about your bad news Sandy. There are no guarantees on this journey good or bad , I was told 2 years and that was over 5 years ago so who knows. I am sorry if this sounds glib but as my wife says to me , if I wake today, feel ok and am able to do stuff then it’s a good day. Enjoy every good day this summer for starters .

take care

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 17 Jul 2020 at 14:45

Hi irun,

I've been positive for the past 5 years, I was originally given a 5 year prognosis. 5 years past and still here too.

Good advice from the missus there, treat every day as a bonus.

Take care back and keep running

User

Posted 17 Jul 2020 at 15:02

Sandy

Sorry to read of your latest rise. Predictions are not always right and I hope yours are wrong. Take care.

Thanks Chris

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