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

User
Posted 03 Jun 2017 at 12:07
Hi Guys

This is the news I was hinting at on my thread, hope it is of help.

https://www.theguardian.com/society/2017/jun/03/prostate-cancer-therapy-study-abiraterone

All the best

Roy

User
Posted 04 Jun 2017 at 08:23
My husband has been offered aberaterone instead of docetaxel. He has already had a prostectomy and als o hormone therapy, daily bicalutamide and three monthly prostap but he has become castrate resistant. It is such a sham e that it is too late but the good news is that it should extend his life and, more importantly improve his quality of life as opposed to chemotherapy. Hopefully, he should respond to it. He has had a bone scan but no sign of the cancer in his bones, he is going for a high contrast scan today -yes Sunday ! and we will have the full picture then.
User
Posted 04 Jun 2017 at 09:49

Hi blueytrew I see by your profile your not far from us in Portsmouth ! And yes I can believe a scan on a Sunday if your using QA hospital ,Right from the very start of treatment they have been fantastic .good luck for today
Best wishes
Debby

User
Posted 05 Jun 2017 at 07:32
Hi Healy

Now you've seen the results of the abi trial does it make it any easier for you on your journey as to have a break from Enzo or completely stop it ? I wish you well in your decision its not one that we look forward to taking when it's our turn

Best wishes

Debby

Edited by member 07 Jun 2017 at 18:25  | Reason: Not specified

User
Posted 06 Jun 2017 at 13:31

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 14 Jun 2017 at 09:54

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 21 Jun 2017 at 11:14
This is a link to the video explaining the results

https://vimeo.com/220031463

Roy

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User
Posted 03 Jun 2017 at 22:44

Roy

I saw this on BBC News 24 today.  It was of great interest to me as I'm young (46) and my oncologist has said that although my post prostatectomy PSA is low, she does believe that given my pathology in the lab, I will need hormone therapy at some stage in the future.

Does anyone know if the men involved in the trial had already had a prostatectomy or radiotherapy or both?

Ulsterman

User
Posted 03 Jun 2017 at 22:58

Both and neither as some men are diagnosed too late for radical treatment.

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

User
Posted 03 Jun 2017 at 23:32
As ever, Lyn, you seem to have done the research ahead of the rest of us. Thank you.

Ulsterman

User
Posted 04 Jun 2017 at 01:47

Lyn--I'm one of those diagnosed late, with extensive bone mets and initial PSA over 1500, ( see my original post for full details), and whilst I still feel good on my current treatment regime of regular HT plus 3 weekly cycles of chemo, which after 2 cycles has brought my PSA down to 157, should I be pushing my onco for "abiraterone"? Or just discuss it up with her at our next meeting? Thanks,

User
Posted 04 Jun 2017 at 08:16

HI my OH had early chemo and now on stampede trial involving abi and Enzo ,so hopefully get similar results .id like to know if this would supersede having early chemo .
Also at last onco app this news was heavily hinted at even though not spoke about in detail but I also felt that if excellant results were from this trial maybe Gary's trial with both drugs would be looked at again mainly because of the vast cost involved and also with similar results .
Only 2 weeks till next app so I'm busy thinking of questions
Best wishes to everyone
Debby

User
Posted 04 Jun 2017 at 08:23
My husband has been offered aberaterone instead of docetaxel. He has already had a prostectomy and als o hormone therapy, daily bicalutamide and three monthly prostap but he has become castrate resistant. It is such a sham e that it is too late but the good news is that it should extend his life and, more importantly improve his quality of life as opposed to chemotherapy. Hopefully, he should respond to it. He has had a bone scan but no sign of the cancer in his bones, he is going for a high contrast scan today -yes Sunday ! and we will have the full picture then.
User
Posted 04 Jun 2017 at 09:49

Hi blueytrew I see by your profile your not far from us in Portsmouth ! And yes I can believe a scan on a Sunday if your using QA hospital ,Right from the very start of treatment they have been fantastic .good luck for today
Best wishes
Debby

User
Posted 04 Jun 2017 at 11:47
Yes it is QA we're very lucky in having such a great team
User
Posted 04 Jun 2017 at 16:19

Of course the timing of all these interventions depends on when you are diagnosed and the local strategy of the onco. I missed out on early chemo, now seen as the gold standard, because it was not the protocol then and I await it in the future. I was also not invited onto the stampede trial which meant I did not get early access to abibiterone or enzalutimide. These were drugs still in the early stages. But I have had hormone therapy throughout (5 yrs+) and am now castrate-resistant and just started enzalutimide. I feel ok about this as treatment is developing all the time and thus treatment paths will vary but also onco' s have different views too.

It can feel like a lottery sometimes but we fight on wherever we are in the treatment cycle.

User
Posted 04 Jun 2017 at 17:20

Last week when I formally rejected RT and was transferred to a new Onco , my existing Onco who is leaving whispered in my ear about early Abi and HT. I'd probably be a prime candidate. All depends on side-effects and QOL as well though. Not sure my liver will cope tbh

User
Posted 04 Jun 2017 at 19:04
Hi Chris

My husband had already had radiotherapy as adjuvant treatment after his prostectomy which was directed at his lymph glands in the abdomen. He has had bicalutamide and prostap for the past five years and now he has become castrate resistant so the only option is aberaterone or doxetaxel. They are testing his blood to get a base line of his liver function and will try abiraterone for two weeks then he goes back for another blood test so they will monitor him closely fortnightly if it goes well he will then continue on it until that doesn't work but still you never know something may turn up.

User
Posted 04 Jun 2017 at 19:28

Very very interesting.
I wonder if the same results will come from the Enzalutamide Trials
I wasn't aware of any abbi + HT trials going on
I started 30 months ago on HT + Abbi + Enzo but dropped the Abbi.

It certainly gives ever more hope of greater longevity.

Paul

Edited by member 04 Jun 2017 at 21:12  | Reason: Not specified

User
Posted 04 Jun 2017 at 21:59
I was under the impression that this trial was part of STAMPEDE in which men had HT and abiraterone ( for 2-3 years) plus Radiotherapy.

This was given as the first line of treatment after diagnosis for men with advanced or locally advanced conditions.

Best wishes to all

Alison

User
Posted 04 Jun 2017 at 22:41
Originally Posted by: Online Community Member

Very very interesting.
I wonder if the same results will come from the Enzalutamide Trials
I wasn't aware of any abbi + HT trials going on
I started 30 months ago on HT + Abbi + Enzo but dropped the Abbi.

It certainly gives ever more hope of greater longevity.

Paul

The abbi only trial was a previous arm (or possibly 2 previous arms - G and another one I think) - I assume that there is some significant outcome data to amass between closing an arm and publishing the findings.

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

User
Posted 04 Jun 2017 at 22:42
Originally Posted by: Online Community Member
I was under the impression that this trial was part of STAMPEDE in which men had HT and abiraterone ( for 2-3 years) plus Radiotherapy.

This was given as the first line of treatment after diagnosis for men with advanced or locally advanced conditions.

Best wishes to all

Alison

I think that was arm H?

They are now on arm K ... abbi and enzo together

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

User
Posted 05 Jun 2017 at 03:36

Gets a bit confusing ! Abi and Enzo is arm j which closed March 2016 and a new arm k started in sept 16 with metformin ??
I'm just grateful Gary was given the chance to be included in these trials and the more research that's done has got to be benificial to all .
Best wishes
Debby

User
Posted 05 Jun 2017 at 07:30
HI there

The Abi only arm was arm G which closed a while ago, so presumably why the results are now available.

It does get a bit confusing!

ALison

User
Posted 05 Jun 2017 at 07:32
Hi Healy

Now you've seen the results of the abi trial does it make it any easier for you on your journey as to have a break from Enzo or completely stop it ? I wish you well in your decision its not one that we look forward to taking when it's our turn

Best wishes

Debby

Edited by member 07 Jun 2017 at 18:25  | Reason: Not specified

User
Posted 05 Jun 2017 at 08:34
My husband is not on any trial, he was given the choice of docetaxel, procaid drug trial which is docetaxel plus another drug or p,lacebo depends which you are allocated or the abiraterone plus steroids. After a lot of thought, research he opted for the abiraterone, the reason being that less side effects but he will be very closely monitored for adverse affects on his heart and liver. Oncology will have the baseline data at the start of his treatment. Hope that clears up any misunderstanding. We are so fortunate to have been offered this very expensive drug
User
Posted 06 Jun 2017 at 13:31

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 13:45
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 14:20

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 15:25

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 18:26
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 12:27
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 09:54

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 10:02

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 11:44

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 11:14
This is a link to the video explaining the results

https://vimeo.com/220031463

Roy

User
Posted 23 Jun 2017 at 12:40
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.
 
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