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

Notification

Error

<12

Prostate cancer trial stuns researchers: 'It's a once in a career feeling'

User
Posted 06 Jun 2017 at 12:31

I was diagnosed with locally advanced prostate cancer in July, 2015.  Very High Risk: PSA - 26,  Gleason 4 +4 = 8, T3b N1M0.


I was admitted to the STAMPEDE trial and was randomised to the control Arm, Arm A which was ADT + RT.   I had hoped I would have been randomised to Arm J which is Arm A+arbiraterone+enzalutamide.  No luck.


Post RT, in May 2016, my PSA was 0.14 but it has risen on 5 consecutive blood tests to 1.4 in the past 12 months.  My doubling time is 3.16 months.  If this trend continues, I would expect to exceed the Nadir +2 =2.14 in August and the STAMPEDE definition of biochemical failure, which in my case would be >5, some time in November 2017.  I don't know if I have any metastases.


I saw my oncologist on the Tuesday before the Arbiraterone paper was published.  I was unaware of it's imminent publication but my oncologist told me it would be published at the weekend.  Naively, I asked if I would be placed on Arbiraterone once I had been deemed to be castrate resistant i.e. I had experienced biochemical failure.  Had I known the results that have since been published, the question would have been,  "Can I start arbiraterone treatment NOW, please?"


Unfortunately, the answer would have been the same.


In Scotland and the rest of the UK, Arbiraterone is only given as front line medication with HT to patients who are metastatic.


For it to be made available to nmCRPC patients, I was told that the following needs to happen:-


- the drug company will need to approve it for that use and this could take 6 - 9 months


- the Scottish Medicines Consortium will need to approve it


- the money needs to be found to pay for this (and it will be expensive).  It will need to be balanced with other NHS costs/ benefits across the board.


Also, it will take 2 years before Arbiraterone can become a generic drug and this will drive down the cost.


Here's what the Independent had to say about the news:


"Around 20,000 men a year with prostate cancer could benefit from a combination of drugs that boost survival dramatically, experts say.


A clinical trial run by Cancer Research UK – believed to be the biggest cancer treatment trial in the world – has found that giving two therapies at once cuts disease progression and offers some patients the chance of a cure.


Researchers say the new drug regime could “transform the treatment” of 20,000 men newly diagnosed with the disease each year in England.


Of these, 5,000 men with the most advanced disease which has spread around the body could see their life expectancy jump from 3.5 years to seven years on average.


Of the 15,000 diagnosed when the disease is confined to the pelvic area, most could expect to live as long as they would if they were cancer-free.


The study, presented at the American Society of Clinical Oncology (ASCO) meeting in Chicago, included around 1,900 men with locally-advanced cancer or whose disease had already spread."


http://www.independent.co.uk/news/health/hope-for-20000-prostate-cancer-patients-after-worlds-biggest-treatment-trial-a7770871.html


Here's are two quotes from the Guardian article:


“Abiraterone not only prolonged life, but also lowered the chance of relapse by 70% and reduced the chance of serious bone complications by 50%,” James said. “Based on the magnitude of clinical benefit, we believe the upfront care for patients newly diagnosed with advanced prostate cancer should change.”


“The potential benefits of giving some men abiraterone alongside hormone therapy are clearly impressive and we will be working with all relevant bodies to make sure this treatment becomes an option available for these men via the NHS,” said Dr Iain Frame, director of research at Prostate Cancer UK."


For many of us, the arbiraterone treatment will come too late and will be used in a palliative setting rather than a treatment to extend our lives and lower the chance of relapse and serious bone complications.


It would be a goodwill gesture from Janssen, the drug manufacturer to waive the cost of their drug, ZYTIGA® (abiraterone acetate) in the case of people who have participated in clinical trials but who were randomised to the Control Arm of the trial.  Our hopes were raised when we entered the STAMPEDE trial and we are proud to have been part of a trial which has yielded such positive results and which will benefit 1,000's of men in future.  Is it too much to ask if we can have arbiraterone now and not wait until our disease has progressed?


 


 


 


 


 


 


 


 


 


 


 


 

User
Posted 06 Jun 2017 at 12:45
It is a desperate situation I agree, if you read my profile my husband is in the late stages of this disease but we take what we can and can only hope that something will come up .
User
Posted 06 Jun 2017 at 13:20

After reading the report i feel very lucky with my choice of oncologist.


Four & half years ago i was diagnosed with mets everywhere i was put straight onto chemo way before any data was available about early chemo and when it was mainly used for end treatment. after finishing chemo even with undetectable PSA he still insisted on starting me on Abbi and HT as soon as i finished Chemo.


I am beginning to think he might be a bit Psychic   

Don't deny the diagnosis; try to defy the verdict
User
Posted 06 Jun 2017 at 14:25

Hi TomF ,my OH was fortunate enough that his diagnoses was given in January 16 and chemo had literally only just been ok'd to be given as SOC and also was offered the trial just before it closed . Gary's scores are very similar to yours but had spread to the lower para aorta nodes . I think it also helps at what area and hospital you get the treatment ,Gary's consultant is part of the research team for the stampede trial ,which I'm not sure if that helped .
I quite agree that it should be given asap as surely in the long run it would be cheaper . I think I read somewhere that the drug company would charge the NHS for 11 cycles of drug and then it would absorb the cost ??
Maybe make another app with your consultant as you never know .
Best wishes
Debby

User
Posted 06 Jun 2017 at 17:26
TomF

Clearly you would have ( most probably) gained a lot from being given the abiraterone at an early stage, had you been given that particular arm of the trial.

I really feel for you - you were willing to give it a go and the trial has benefited many men and - of course - the manufacturer.

Your idea about approaching the drug company I feel is worth a shot. Why not?

If you are up to the job perhaps PCUK could help or we could could start a group that supports your request.

I am not sure how to go about it but perhaps someone on here could advise?

Otherwise - is there a possibility of getting the drug privately? I would estimate the cost to be £30-40,000 per year.

Would another consultant prescribe it to you? Sometimes they follow different protocols.

Again - others could possibly advise.

All the best

Alison

User
Posted 07 Jun 2017 at 11:27
Hi SI
Having read your profile I can see youngster had some journey to date but with positive results

I seen to be embarking on a similar journey ie Gleason 9 PSA 25 in feb with some bone mass identified in two areas

Presently on my 5/6 doxetaxol sessions and my onco has mentioned radiotherapy as a potential next step which according to advice on my other recent thread seems to be unusual

My PSA is presently 0.5 so so far do good...

Having read the results if the recent Abiterone trials I am presently hoping this may be an option and wondered what your opinion of this treatment is please?

Regards
User
Posted 14 Jun 2017 at 08:54

Morning all,
I was on the Abi trial and was interviewed again by PCaUK due to these latest results.


https://prostatecanceruk.org/about-us/news-and-views/2017/6/new-stampede-trial-results-show-earlier-abiraterone-could-improve-survival-of-men-with-advanced-prostate-cancer


All I can say is that I'm 4 years into a 3 year prognosis, currently been on a hormone holiday for the last year and was told yesterday that my PSA is still at 0.01 - whoop!
On the flip side my testosterone is still in the ditch, but you can't have everything.


Currently on a diet to try and remove those Zolodex induced pounds I've gained. I found thinking about dieting wasn't enough, actually reducing the food level is also required, who knew!


I'm seeing my onco in three months and if my T numbers are still low testosterone supplements will be considered.
Not sure what I think about that yet, but I'll worry about it when the time comes.


Keep well guys


Kevin

User
Posted 14 Jun 2017 at 09:02

Originally Posted by: Online Community Member


I'm seeing my onco in three months and if my T numbers are still low testosterone supplements will be considered.
Not sure what I think about that yet, but I'll worry about it when the time comes.



Yikes! That would worry the hell out of me - I have been on Zoladex to get the T down and now I'm put on supplements to get the T up! Wow, I'd take some convincing that this was a good idea.

User
Posted 14 Jun 2017 at 10:44

Originally Posted by: Online Community Member


 


Currently on a diet to try and remove those Zolodex induced pounds I've gained. I found thinking about dieting wasn't enough, actually reducing the food level is also required, who knew!



 


Ha ha ha ha - I nearly choked on my biscuit! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Jun 2017 at 10:14
This is a link to the video explaining the results

https://vimeo.com/220031463

Roy
User
Posted 23 Jun 2017 at 11:40
My husband has had to have a naphrostemy (spelling?) on one of his kidneys. He has significant lymph node in the pelvic area and some around the aortic area. They stopped enzalutamide He was on 3 monthly hormone injections but has severe lymphedema in the lower abdomen genitalia and legs so they have said ther is no point continuing these. I am probably clutching at straws but is there any hope for him in this situation, people are very kind but it does seem like they have given up on him.
 
Forum Jump  
<12
©2025 Prostate Cancer UK