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Abiraterone or Enzalutamide

User
Posted 12 Jan 2023 at 11:45

Hi Dave 
Same Here with Fatigue 
Regards Barry

User
Posted 12 Jan 2023 at 19:03
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 13 Jan 2023 at 14:21

Been on Enza for 11 months myself, so its great to here of your timeframe, nearly 3 years coming up.

It does work!!

User
Posted 13 Jan 2023 at 15:08

Hi Paul0 

Similar diagnosis to yourself and age but beat you hands down with a starting PSA of 2100 was given same choice by onco enza or chemo it was a no brainer to choose Enzo wife had seen to many of her family go through chemo,down at 0.5 at mo next blood test in a few weeks which I'll post on my profile,my onco said everybody's different how they react to an how long there on Enza she had somebody on her books that had been on it 5 years,so there's always hope 😉 

 

User
Posted 13 Jan 2023 at 22:15

Yes it's working for me  hopefully for a long time some men do very well indeed and at 11 months it would appear you are one of them too. I also had RT which has probably helped get rid of the cancer as well  .My scans are  all clear no indication of any spread and when I pressed our very serious nurse (unfortunately no sense of humour a requisite as far as I'm concerned because  humour has helped me get through some dark times  ) as to the status of the cancer in my lymph nodes she said there were signs that they were now clear but our oncology team never say cured  as understandably it may return due to my being high risk .

All men on this drug should be monitored very carefully and not by just PSA alone regular scans are imperative ,so if your on Enzalutamide ensure you get them .

 

User
Posted 14 Jan 2023 at 09:02

Hi lib

I have a consultation in a few weeks I will now certainly request scans to back up low psa readings as I am hearing a few people on this forum and oncologists on u tube that you cannot rely on psa readings alone.

Regards Phil 

User
Posted 14 Jan 2023 at 12:56

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 17 Jan 2023 at 16:47

Originally Posted by: Online Community Member
I will now certainly request scans to back up low psa readings as I am hearing a few people on this forum and oncologists on u tube that you cannot rely on psa readings alone.

 

That's true to an extent - my father-in-law died very suddenly with advanced PCa which wasn't spotted. His PSA dropped like a stone for no apparent reason and the doctors were all happy! However, it is vanishingly rare for a man to have active cancer with a low stable PSA and your stats show that your response to HT was excellent so you don't appear have one of the rare PCas that are non-PSA secreting. Also, you are already known to have mets so you may have a fight on your hands to get a scan; they aren't generally offered unless there are symptoms / indicators to suggest significant progression. 

An annual dexa scan is recommended for any man on long-term HT unless he is already being prescribed Zometa. When I first joined this forum, zometa was common but less so these days - possibly a cost-cutting thing?  

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

User
Posted 01 Mar 2023 at 13:54

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 01 Mar 2023 at 16:40

That’s really great news, long may it continue.

Also good to know that the side effects are manageable as it looks like I will be having to choose between Abi, Enza etc soon… 

Good luck

Phil

User
Posted 01 Mar 2023 at 17:11
Thanks Phil.

Good luck to you too.

Cheers

Dave C

User
Posted 02 Mar 2023 at 10:53

Originally Posted by: Online Community Member

Yes it's working for me  hopefully for a long time some men do very well indeed and at 11 months it would appear you are one of them too. I also had RT which has probably helped get rid of the cancer as well  .My scans are  all clear no indication of any spread and when I pressed our very serious nurse (unfortunately no sense of humour a requisite as far as I'm concerned because  humour has helped me get through some dark times  ) as to the status of the cancer in my lymph nodes she said there were signs that they were now clear but our oncology team never say cured  as understandably it may return due to my being high risk .

All men on this drug should be monitored very carefully and not by just PSA alone regular scans are imperative ,so if your on Enzalutamide ensure you get them .

 

Difference is Libracj is that I am deemed "incurable" so I am not qualified for ongoing scans and tests (other than the PSA).

It's one of my gripes that whilst all of the fundraising efforts surround early testing correctly, the Stage 4 incurables whilst receiving good maintenance treatments, do seem a little ignored when it comes to finding a cure.

A company in USA called AMBRX has a mission statement to cure more of us incurables and has raised $1.9bn on Wall Street on the back of a hugely successful 1st stage trial that showed between a 50% and 90% reduction in PSA in Hormone resistant men with PCa.

In other words once the HT stops working and men are left with only the most intrusive of treatments, their new "treatment" can be inserted into the plan and in theory buy more time for men at least, or indeed perhaps start the fightback to curing more men.

I am praying for this for myself and for all men in my position.

User
Posted 02 Mar 2023 at 11:23

Thanks for sharing this interesting post. I hope this treatment succeeds for a long  time to come for all of us.

Cheers

Dave C

User
Posted 02 Mar 2023 at 14:18
Hi been on Enza for two years now with 6 monthly Decapeptyl injections, PSA under 0.1 even after reducing from 4 tabs to 3 it has helped a little with the energy levels, flushes not as severe or frequent saying that they still tail off over the 6 month injection period, during the appointments aches and pains talked about and a bone scan if deemed necessary. Yes I have good days and some bad days but that's life

DaveH

User
Posted 04 May 2023 at 06:03

Quick update

PSA remains at 0.06. Last review was with Oncology Pharmacist only. Moved on to 3 monthly prescriptions.
Emotional episodes seem to be getting a bit more frequent. Aching being helped by low dose Naproxen (2 tablets about every 3-4 days)

Take care all.

Cheers

Dave C

 

 

 

User
Posted 04 May 2023 at 10:50

Great news about the PSA. Keep it up 👍

Emotional issues a tricky one. I’ve just managed to get some more counselling on the NHS. First one next week. I couldn’t have got through the first couple of years without it. I was a wreck… 

Maybe worth trying it out ?

Take care

 Phil

User
Posted 04 May 2023 at 12:30

Thanks Phil,

I’ll check it out.

Cheers

Dave C

User
Posted 04 May 2023 at 13:32

So just got in from my latest visit to my consultant. Was hoping for a miracle but it wasn’t to be. PSA up to 6 now from 3.17 and Testosterone not as low as it I should be.

So a bit of a change to the meds now. Stop taking the Bicalutamide, replace the Zoladex with Prostap which worked the first time for me, and add in Dexamethasone. He also wants a new scan to see what’s going on, within the next 2 weeks. Next appointment in 7 weeks.

So fingers crossed the new stuff works . I presume this is to keep me off Abi or Enza for as long as possible.

Hoping the prostap doesn’t induce the terrible depression I had first time round.

Take care,

Phil

User
Posted 04 May 2023 at 15:34

Hi Phil,

Fingers crossed here too.

All the best.

Dave C

 
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