I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Abiraterone 2024

User
Posted 12 Apr 2024 at 15:40

The elephant in the room?

Lots of newspaper articles about it been not licensed for use for newly diagnosed high risk non-metastatic Pca patients in England, but not much comment on this forum, though I did see someone started a thread asking where it could be obtained a couple of weeks ago.

 

It does seem slightly ironic that the STAMPEDE trial that indicates its efficacy for use on high risk patients was conducted largely in England, yet that seems to be one of the few countries that it's not been approved for use in this context. However it's wider use is supposedly set to be reviewed this year. 

 

So what is going on?


I understand there's little financial incentive for the creators of the drug to go through the process of applying for it's non-purposed use through NICE as it's now off patent, but this hasn't stopped health authorities in Scotland and Wales taking a pragmatic approach.

 

A few questions if I may.

 

I believe it works by disrupting testosterone production in parts of the body other than the testes, but if someone managed to achieve an extremely low PSA count during current ADT therapy, would Abiraterone have made much difference or is there something else going on?

 

What drugs is it being used along side in Scotland and Wales?

 

Here's a piece the BBC did from last year.

 

 

Abiraterone: Thousands of men miss out on life-extending prostate cancer drug - BBC News

 

£250 per month seems pretty cheap, would it really be that simple, i.e. would an NHS Oncologist tailor a treatment plan around your private prescription?
I doubt it.

 

Has anyone in England broached the subject with an NHS consultant?

Edited by member 13 Apr 2024 at 01:43  | Reason: Not specified

User
Posted 14 Apr 2024 at 10:00

The use of some of the novel hormone therapy medications (Abiraterone, Enzalutamide, Daralutamide, Apalutamide) combined with the GnRH/LHRH injections for time-limited HT is increasing in the case of curative time-limited treatments for high risk disease. However, as you say, we've not seen this in the UK except for trials, and the case where these have been used instead of chemo for N1 (local lymph node) involvement.

I haven't been following this as it's not available in the UK, but there seems to be some thought that getting Testosterone levels very low (lower than the GnRH/LHRH injections sometimes achieve) may be beneficial in high risk cases, and this is where Abiraterone can help. It is also an anti-androgen, but it's main reason for use is to block other ways Testosterone is manufactured. The GnRH/LHRH injections only stop Testosterone produced by the Testicles - it's also produced by the adrenal glands, and the cancer cells can mutate to produce Testosterone or DHT themselves all of which Abiratrone interrupts.

Edited by member 14 Apr 2024 at 10:00  | Reason: Not specified

User
Posted 12 Apr 2024 at 15:40

The elephant in the room?

Lots of newspaper articles about it been not licensed for use for newly diagnosed high risk non-metastatic Pca patients in England, but not much comment on this forum, though I did see someone started a thread asking where it could be obtained a couple of weeks ago.

 

It does seem slightly ironic that the STAMPEDE trial that indicates its efficacy for use on high risk patients was conducted largely in England, yet that seems to be one of the few countries that it's not been approved for use in this context. However it's wider use is supposedly set to be reviewed this year. 

 

So what is going on?


I understand there's little financial incentive for the creators of the drug to go through the process of applying for it's non-purposed use through NICE as it's now off patent, but this hasn't stopped health authorities in Scotland and Wales taking a pragmatic approach.

 

A few questions if I may.

 

I believe it works by disrupting testosterone production in parts of the body other than the testes, but if someone managed to achieve an extremely low PSA count during current ADT therapy, would Abiraterone have made much difference or is there something else going on?

 

What drugs is it being used along side in Scotland and Wales?

 

Here's a piece the BBC did from last year.

 

 

Abiraterone: Thousands of men miss out on life-extending prostate cancer drug - BBC News

 

£250 per month seems pretty cheap, would it really be that simple, i.e. would an NHS Oncologist tailor a treatment plan around your private prescription?
I doubt it.

 

Has anyone in England broached the subject with an NHS consultant?

Edited by member 13 Apr 2024 at 01:43  | Reason: Not specified

User
Posted 24 Apr 2024 at 22:43

Hi Richard,

Yes he was diagnosed last May, PSA 252, bone scan clear but hot spot on lymph node in pelvis, started Bicalutamide immediately for three weeks, then Prostap every 12 weeks, and Abiraterone and Prednisolone added in,then just leading up to Christmas last year had 20 sessions of radiotherapy. To stay on Prostap and Abiraterone until next July, PSA now 4. We were told there is a higher chance of recurrence as his PSA was so high, hence the Abiraterone.

Hope you are doing well.

Regards

Linda 

Show Most Thanked Posts
User
Posted 14 Apr 2024 at 08:10

Hi Richard… I didn’t have any luck in finding anything other than an extremely expensive private prescription for Abiraterone.

This article may be of interest.

https://tackleprostate.org/nice-rejects-use-of-abiraterone-for-men-with-newly-diagnosed-metastatic-prostate-cancer/

Ian 

User
Posted 14 Apr 2024 at 09:31
The system is not allowing me to reply as a private message.

 

Following a private consultation with the oncologist who is also on the NHS team I was quoted…

 

Cost of day case room £550

Blood tests £290

Meds £2,930

Total £3,770 per monthly visit.

 

Treatment would be for up to two years with a likely cost £90K. The oncologist did not think an IFR - Individual Funding Request to the NHS would be successful. So Abiraterone is not an option I can afford.

 

 

User
Posted 14 Apr 2024 at 09:37

Yeah I think you have to have posted on the forum 10 times before you can use the messaging facility.

thanks for the info.

User
Posted 14 Apr 2024 at 10:00

The use of some of the novel hormone therapy medications (Abiraterone, Enzalutamide, Daralutamide, Apalutamide) combined with the GnRH/LHRH injections for time-limited HT is increasing in the case of curative time-limited treatments for high risk disease. However, as you say, we've not seen this in the UK except for trials, and the case where these have been used instead of chemo for N1 (local lymph node) involvement.

I haven't been following this as it's not available in the UK, but there seems to be some thought that getting Testosterone levels very low (lower than the GnRH/LHRH injections sometimes achieve) may be beneficial in high risk cases, and this is where Abiraterone can help. It is also an anti-androgen, but it's main reason for use is to block other ways Testosterone is manufactured. The GnRH/LHRH injections only stop Testosterone produced by the Testicles - it's also produced by the adrenal glands, and the cancer cells can mutate to produce Testosterone or DHT themselves all of which Abiratrone interrupts.

Edited by member 14 Apr 2024 at 10:00  | Reason: Not specified

User
Posted 15 Apr 2024 at 10:07

Thanks for your reply Andy, I didn't know cancer cells could mutate to produce testosterone, but Abiraterone's ability to interrupt this as well as testosterone produced elsewhere in the body probably explains the results from the trials.

I believe you're incorrect to state that Abiraterone hasn't been approved for use in the UK for non-metastatic high risk patients as the guidelines in Wales and Scotland now permits it's use, hence the use of the term postcode lottery by Prostate Cancer UK in the BBC piece. However I've not seen anyone from Wales or Scotland on this forum indicate they are been treated with Abiraterone in this setting.

I am still trying find out if the BBC article is factually accurate i.e. if Mr Giles is indeed benefiting from using Abiraterone to augment his standard NHS practice for £250 per month or if as I suspect it's not as simple as that.

 

User
Posted 22 Apr 2024 at 01:46

Abiraterone 

I live in Scotland and my husband is on Prostap injections 12 weekly as well as Abiraterone and Prednisolone for two years. His PSA was 252,

Linp

Edited by member 22 Apr 2024 at 01:49  | Reason: Not specified

User
Posted 22 Apr 2024 at 06:43

Thank you for your reply Linda, is he also scheduled for Radiotherapy?
Wishing you all the best with his treatment and hoping the HT is manageable for him.

User
Posted 24 Apr 2024 at 22:43

Hi Richard,

Yes he was diagnosed last May, PSA 252, bone scan clear but hot spot on lymph node in pelvis, started Bicalutamide immediately for three weeks, then Prostap every 12 weeks, and Abiraterone and Prednisolone added in,then just leading up to Christmas last year had 20 sessions of radiotherapy. To stay on Prostap and Abiraterone until next July, PSA now 4. We were told there is a higher chance of recurrence as his PSA was so high, hence the Abiraterone.

Hope you are doing well.

Regards

Linda 

 
Forum Jump  
©2024 Prostate Cancer UK