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Stampede Trial help

User
Posted 14 Sep 2018 at 17:08

I was diagnosed with Advanced PC on 20 August and am just completing my bicalutamide tablet course and have had my first prostap injection, next one due on 4 October (3 month jobby).

Feel okay on hormone treatment although very early days, got a bit of backache, feels like I've done a full day gardening the previous day each morning when I get up.

When we saw the Urologist last month he mentioned a Stampede Trial which maybe appropriate for my case and type of cancer.

Is anyone undergoing Stampede treatment, if so how is it going and what does it entail?

User
Posted 14 Sep 2018 at 21:22

They are currently on arm K and L I think, which is for men on HT - here is the overview

http://www.stampedetrial.org/participants/about-stampede/ 

And here is a summary of previous arms (select 'trial design') https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-hormone-therapy-with-zoledronic-acid-docetaxel-or-celecoxib-for-prostate-cancer#undefined 

Loads of members of the forum are on Stampede or have been in the past. Even on the control arm, the closer monitoring is rwassuring.

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

User
Posted 14 Sep 2018 at 22:02
Hi jasperM my OH Gary is on the stampede trial , after early chemo he was offered the chance of stampede which was at that time recruiting arm j ,Enzalutamide and abiraterone combination .

His history is PSA 23 Gleason 9 with lymph spread . He has been on the trial now for over 2 years (diagnosed nearly 3 years) and his PSA has remained 0.01 undetectable.the main benefits are you are constantly monitored in Gary’s case bloods every 4 weeks and onco every 8 , luckily we live 10 mins drive from hospital . Even if you get the arm that doesn’t involve the trial drugs you are still monitored closely ,and if the trial doesn’t suit you can withdraw at any time .

If you need any more info just ask ,there’s great knowledge and expireance on this site .

Best wishes

Debby

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User
Posted 14 Sep 2018 at 20:28

Hi Jasper. Can’t help on this one my friend but it needs to be bumped back to the top of the list

Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 14 Sep 2018 at 21:07
Stampede is a big clinical trial that has been running for several years. It mainly looks at adding in extra treatments to the standard of care for advanced PC, and has had some notable successes e.g. the addition of up-front docetaxel chemotherapy to standard hormone therapy. You can google the name to find its website. I am not sure what aspects they are recruiting for at the moment but if it were me I would definitely consider it.

Good luck with everything!

User
Posted 14 Sep 2018 at 21:22

They are currently on arm K and L I think, which is for men on HT - here is the overview

http://www.stampedetrial.org/participants/about-stampede/ 

And here is a summary of previous arms (select 'trial design') https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-hormone-therapy-with-zoledronic-acid-docetaxel-or-celecoxib-for-prostate-cancer#undefined 

Loads of members of the forum are on Stampede or have been in the past. Even on the control arm, the closer monitoring is rwassuring.

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

User
Posted 14 Sep 2018 at 22:02
Hi jasperM my OH Gary is on the stampede trial , after early chemo he was offered the chance of stampede which was at that time recruiting arm j ,Enzalutamide and abiraterone combination .

His history is PSA 23 Gleason 9 with lymph spread . He has been on the trial now for over 2 years (diagnosed nearly 3 years) and his PSA has remained 0.01 undetectable.the main benefits are you are constantly monitored in Gary’s case bloods every 4 weeks and onco every 8 , luckily we live 10 mins drive from hospital . Even if you get the arm that doesn’t involve the trial drugs you are still monitored closely ,and if the trial doesn’t suit you can withdraw at any time .

If you need any more info just ask ,there’s great knowledge and expireance on this site .

Best wishes

Debby

User
Posted 14 Sep 2018 at 23:36
Hi..my OH was diagnosed in march PSA 26.3 Gleason 7.. he started on the stampede trial... Just the 3 monthly Prostap injections and early chemo (docetaxel). His PSA is now 0.1

He will be having blood tests every 6 weeks which is reassuring.

Thanks Karen

User
Posted 15 Sep 2018 at 10:40
Many thanks everyone, the people on this site are so helpful, it's so inspiring.

I've got my first meeting with the Oncologist on Monday so this is one of the many things I'm hoping to be discussing with him.

User
Posted 07 Oct 2018 at 10:55

Hi Jasper

Rob was diagnosed with Advanced prostate cancer in April, it having spread to his pelvis and nearby lymph glands. His PSA was 44 and his Gleason 4+3=7,  T3b, N1M1.

He was immediately put on a course of hormone tablets for a month or so before starting chemo for 6 sessions of Docetaxel and was recommended for Stampede trial, using hormone patches - Estradiol, 4 transdermal patches changed twice a week. After one month on the trial  his Gleason score had gone down to 2.53, with the latest reading of 1.05 which has been great progress. He will be closely monitored and has been told to expect to stay on the patches for some years, probably forever. There was no choice of which treatmeant he could have on Stampede as we were told it was completely random selection.

Like you, he almost rattles with the amount of tablets he has to take especially on the run up to chemo and a few days after!

User
Posted 10 Oct 2018 at 20:40

My OH was on this trial arm G which was standard treatment plus Abiraterone.

From our experience I would say go for it!

Lots of extra care and appointments and if there are any issues they tweak the treatment.

You get to see the consultant a lot more which is reassuring and you can build up a relationship.

You still get the normal treatment and maybe more as well, which could be a great opportunity to get a better overall treatment that is used in the future for all men.

It takes up time going for the appointments but if you can fit these in then I would do it.

all the best

Alison 

 

 

User
Posted 19 Nov 2018 at 04:57

Hi Debby, 

I am new to this forum, and I came across your posts. My dad has advanced prostate cancer, it is now in his pelvis and shoulder. We ( all my 7 siblings) and I are meeting with the Oncologist on Tuesday to discuss next steps, options etc. He is scheduled for chemo on December 5th. 

I see you husband is on a trial, did you ask for it or did they offer? 

I am hoping to gather some more info so I can ask more questions at the meeting. 

History:

Cancer was removed back in 2001

Cancer free for 9 years

PSA increased ( currently at 39) - hormone therapy for many years however it recently stopped working... 

Thank you so much!!! I am so very thankful i found this group!!

User
Posted 19 Nov 2018 at 06:43

Hi LauraBB,I hope by joining this site that we can help you with any questions or even if you need it just to get things off your chest ,
Gary had chemo 2 1/2 years ago with great results ,carrying on with normal life as much as possible .
The trial was offered to Gary ,but be sure to ask as there are many trials going on and depending on staging different options are available . If you haven’t already done so you can download the toolkit on this site or as we did get the paper version .
also if you start your own thread up you can keep track of any answers .

best wishes
Debby

Edited by member 19 Nov 2018 at 06:47  | Reason: Not specified

User
Posted 19 Nov 2018 at 08:18
Hi LauraBB, thanks but no thanks for having to join us here, but as Merrivale suggests, start your own thread with your Dad’s full details and profile so as to assist people here to help you with individualised advice.

Sorry to be a bossy-boots 😉.

Best of luck for the future to you and your Dad.

Cheers, John.

 
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