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Abiraterone or Enzalutamide

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User

Posted 05 Jan 2022 at 19:01

Hello.

My Oncologist wants to add either Abiraterone or Enzalutamide to the 3 monthly decapeptyl injection that I currently have.

It's my decision as to which one to select.

Has anyone been asked to make the same decision and if so, how did it go?

Any pearls of wisdom gratefully received.

Thanks and take care everyone.

Dave C

User

Posted 11 Mar 2022 at 17:03

Hi all,

Quick update, taken Enzalutamide for 4 weeks. PSA dropped from 7.0 to 0.7.

Seems pretty effective with only side effect a little tired.

Take care everyone.

Cheers

Dave C

User

Posted 16 Oct 2022 at 17:18

Thanks Matthew.

I guess there is no other way.

The best advice I had at the start was to do some research and understand the disease so you can have at least some level of "control".

I have absolute trust in the medical staff who have been treating me. Cannot fault the NHS.

The people on his site have been amazing.

Take care you and all.

Cheers

Dave C

User

Posted 01 Mar 2023 at 14:54

Quick update March 2023.

PSA remains at 0.06. All in all pretty happy. Side effects mostly manageable.

Take care everyone

Dave C

User

Posted 12 Mar 2022 at 10:13

HI,

Please wish him good luck from me.

Dave C

User

Posted 29 Mar 2022 at 09:00

good luck with your treatment I am also fed up with telephone appointments had a abcess in radiotherapy area keep giving me antibiotics but doesn't seem to be clearing it waiting for doctor's appointment in next couple off weeks hopefully they will have a look this time 🙄

User

Posted 03 Apr 2022 at 15:24

Hi All.

Quick update. PSA fallen again to 0.25. Seems to be working so far.

Take care everyone.

Cheers

Dave C

User

Posted 16 May 2022 at 16:08

Hi All,

Diagnosed March 21 with extensive Bone Metasteses and PSA over 3000. Went onto Prostap in April 21 and Enza started in July 21. In February 21, I could only get out of bed by rolling out and couldn't pick anything up from the floor. Just felt too exhausted. Pain seemed to come and go and rotate around my body. I described to doctors how it felt like my ribs, back and hips were badly bruised but no apparent reason and weight loss was from about 11stone down to 9stone in 3 months and no appetite. Within a few weeks of starting treatment I was gaining weight and pain disappeared. I have suffered hot sweats (sometimes soaked when waking up and frequently during the day). I just think how good it is being able to keep the heating and costs lower. Tiredness (fatigue and falling asleep when sat down) has probably increased and muscles feel a lot weaker and legs ache but, nothing like the pain and fatigue when diagnosed. I put my aching legs down to running after our 3 year old grandson in the Park a couple of times a week. Certainly feel treatment has been amazing to date. Back to 12 stone and appetite fine.

My PSA has reduced but only managed to get down to 43 so far. Not sure if this helps anyone as does not appear typical.

Bernard

Hope for the best but expect the worst.

User

Posted 16 May 2022 at 17:20

Hi Phil, I know exactly what you mean about "messing with your head"

My first Hormone treatment left me hardly recognising myself. Second time round has been much more tolerable.

Cheers

Dave C

User

Posted 25 May 2022 at 15:38

Quick update.

PSA fallen again to 0.10. Hopefully stay low for a good while now.

Consultant seems very pleased.

Take care all.

Cheers

Dave C

User

Posted 26 May 2022 at 20:22

Thanks Barry.

I hope things are going well for you.

Cheers

Dave C

User

Posted 11 Oct 2022 at 18:28

Quick update. PSA fallen again to 0.06. Very happy with that.

Shoulder pain is wear and tear. Have been prescribed Naproxan and had some Physio.

New drug and home exercises helping quite a bit.

Take care

Dave C

User

Posted 15 Nov 2022 at 11:52

Hi,

Good luck to both of you.

Cheers

Dave C

User

Posted 11 Jan 2023 at 15:12

Hi all,

Quick update. PSA stable at 0.06. Starting to get a few emotional moments. Come from nowhere. Any one else had these. Fatigue still an issue but managing well.

Take care everyone.

Dave C

Edited by member 11 Jan 2023 at 15:13 | Reason: Not specified

User

Posted 12 Jan 2023 at 20:03

Hello I have been on Enzalutiamide for 31 months now ,read my profile for full story .Just had the results of my surveillance scans bone and CT nothing of concern on the scans and PSA still undetectable .However there is some indication that Enzalutiamide and the other second generation ADTs can in some cases mask cancer spread because PSA levels are undetectable or very low .Therefore men on these drugs should not rely on PSA readings alone as any rise no matter how small whilst taking Enzalutamide can indicate aggressive cancer spread so all men taking it should be monitored very carefully by regular bone,CT and MRI scans .Enzalutamide has also been implicated in rare cases where the cancer has mutated into a more aggressive form such as small cell cancer .Thus regular scan monitoring should be a requirement for those on this drug .

User

Posted 14 Jan 2023 at 13:56

Hi Phil

Yes press for at least yearly scans bone and CT it's now recommended for men on the type of medication we are on.Any PSA rise on Enzalutimide even if it is below the standard 2 ng for investigation cannot be ignored .

.Good luck with your consultation .

User

Posted 01 Mar 2023 at 18:11

Thanks Phil.

Good luck to you too.

Cheers

Dave C

User

Posted 04 May 2023 at 16:34

Hi Phil,

Fingers crossed here too.

All the best.

Dave C

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User

Posted 05 Jan 2022 at 20:05

The success rates and side effects of each are very similar so little to choose between them. Anecdotally, it seems from men posting on this forum that enza is slightly preferred by oncologists.

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

User

Posted 05 Jan 2022 at 20:39

It’s great that you’ve been offered Abi ? I’m no expert but all I seem to read is that Abi is not on offer anymore. I was offered early Enza on top of Decapeptyl at a rough cost of £28k per year but declined it. Latest evidence said it may only buy 6 months extra time if used early whereas 4 to 5 months I’d used later. I look at Kevin Webber ( Irun ) and see he went straight on Abi and is going well strong late on. I’m gonna be a pain and ask for that when needs be. My Onco wanted to give me the cheapest Prostap or Zoladex therapy but I wasn’t having that after hearing more favourable Decapeptyl side effects. Keep well

User

Posted 06 Jan 2022 at 14:36

Hi Dave what's the reason he wants to add ABI or Enza at this stage?. Read your bio, you've done very well.

User

Posted 06 Jan 2022 at 15:08

Hi, I think I need to update my bio. I had slowly rising PSA during early 2020. Once it reached 2 my Oncologist recommended 6 cycles of chemo. Really tough experience and my PSA fell to 0.4 but over the past 6 months it has risen again.

Recent scan showed some continuing lymph node involvement. Hence new treatment option.

Feels like a tough decision I wish the consultant would make a recommendation. Perhaps I'll ask him again

Take care

Cheers

Dave C

User

Posted 12 Jan 2022 at 19:21

Hi Everyone.

Met with my Oncologist today and chose Enzalutamide.

He said that if he was making the decision they would also have chosen it.

Thanks for all the responses and support. This forum makes such a difference.

Cheers

Dave C

User

Posted 11 Mar 2022 at 17:03

Hi all,

Quick update, taken Enzalutamide for 4 weeks. PSA dropped from 7.0 to 0.7.

Seems pretty effective with only side effect a little tired.

Take care everyone.

Cheers

Dave C

User

Posted 11 Mar 2022 at 22:04

My husband has also recently had enzauldamide added to his Decapeptyl injection for a rising psa. So far he is tolerating the enzauldamide but its still early days as only started the drug 2 weeks ago.

Edited by member 11 Mar 2022 at 23:53 | Reason: Not specified

User

Posted 12 Mar 2022 at 10:13

HI,

Please wish him good luck from me.

Dave C

User

Posted 14 Mar 2022 at 06:35

Thank you....and good luck with your journey. I have my fingers crossed 🤞 for you

User

Posted 28 Mar 2022 at 21:19

I’m new to this, diagnosed in Sept 2021 - late. PSA was 500. I’ve been taking Zoladex implants and Enz and PSA now 0.1. Problem is the cancer seems to have left holes and lesions in my bones. I’m getting plenty of pain which the usual pain killers don’t really touch.
Enz seems to have worked in terms of keeping me alive. Not too much in the way of side effects.

anyone had similar experiences / in particular with pain after taking Enz?

User

Posted 29 Mar 2022 at 08:53

Hi Dave ,
After about four years with o psa , my psa is now rising quickly now 4.5 , had a scan two new hot spots left and right thighs ,I am to go back on HT this Friday, then they have said maybe to add additional HT maybe Enzo or Abi, all done with telephone appointments a bit fed up with them I would like to see someone and have a chat,
Good Luck

Barry

Edited by member 29 Mar 2022 at 08:54 | Reason: Not specified

User

Posted 29 Mar 2022 at 09:00

User

Posted 29 Mar 2022 at 10:11

Hi All, I agree with your points about telephone consultations. I met a consultant to sign consent forms for the Enza and it was a refreshing change. No complaints though, considering how busy everyone is. My next Enza review is tomorrow. I’ll post my result.

Good luck everyone.

Dave C

User

Posted 03 Apr 2022 at 15:24

Hi All.

Quick update. PSA fallen again to 0.25. Seems to be working so far.

Take care everyone.

Cheers

Dave C

User

Posted 04 Apr 2022 at 10:19

That’s good news Dave . Hoping it keeps working for many years.
Phil

User

Posted 04 Apr 2022 at 11:14

Thanks Phil,

We seem to be on fairly similar paths.

All the best to you.

Cheers

Dave C

User

Posted 04 Apr 2022 at 11:45

Yes it does seem like that .

I am waiting on my next PSA test with much anxiety….
Really hoping it’s a blip but l do feel like I’m not going to be that lucky .

Take care

Phil

User

Posted 04 Apr 2022 at 23:27

Hi again. Hope I’m not boring you all with this but wanted to add a few more comments. As I’ve said before I was diagnosed with stage 4 PCR in October 2021, 9 months or so after first experiencing symptoms. I was suffering from shocking pains in my neck and back and really bad headaches. PSA of 500. I was offered either chemo or Enzalutimide and pushed in the direction of the latter. Generally all went ok for the first 2 or 3 months and my PSA has gone back to 0.1.

However the pains have returned in all the same areas. Not as bad but still bad enough. The explanation given is that the cancers (which had spread “everywhere”) had shrunk and were no longer spreading but my bones were now like Swiss cheese - holes and lesions everywhere. They are trying to repair themselves and this somehow is the source of the pain now. It may or may not reduce as time goes on.

Two points: 1) anyone taking Enzalutimide needs to know the risk of long term pain that may be hard to control. 2) does anyone have experience of the long term effects of Enzalutimide in terms of chronic pain??

Edited by member 04 Apr 2022 at 23:56 | Reason: Not specified

User

Posted 16 May 2022 at 16:08

Hi All,

My PSA has reduced but only managed to get down to 43 so far. Not sure if this helps anyone as does not appear typical.

Bernard

Hope for the best but expect the worst.

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