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Stampede Trial Arm J Zytiga and Enzalutamide

User
Posted 30 Sep 2014 at 17:35

I was diagnosed in May 2014, with a PSA of124 , Gleason 4+5=9 Aggressive Prostate Cancer T3 N1 M1.Put on Zoladex ,and only just recently was fortunate enough to draw the Zytiga and Enzalutamide arm of the recently introduced Stampede clinical trial Arm J With no side effects so far .Lets hope that the trial is successful and these become first line  drugs for PCa  I would never have known I had PCa unless my brother had phoned me telling me he had jut been Dx and to get checked out as it can be hereditary. So whenever I see my friends and relations I mention that its important to ask for a PSA test. as like in my case there were no symptons of this horrible disease. My PSA has come down to 1.8 as of last week ,which I am pleased about.     Paul70

User
Posted 30 Sep 2014 at 21:10

Hi Paul

 

I envy you that arm http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

 

I started on STAMPEDE in March 2008 on the Zometa (Zoledronic Acid) arm and have no regrets. Despite a very poor prognosis I am still here http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif. In hindsight I would probably have preferred the Chemo arm but then that's splitting hairs.

 

Good luck and keep us informed of your progress http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Nil desperandum

Allister

User
Posted 24 Nov 2014 at 11:39

I am trying to decide if the Stampede trial is right for my dad and came across this post....

My dad has recently been diagnosed with advanced localized prostate cancer, he is 65, it has already spread to lymph nodes but not bones. His gleason score is 8.  He was started on hormone treatment at his oncologist appointment last week.

He has been offered the stampede trial.

Given that arm J is the newest arm and that there are only 3 arms available now I am guessing he may well get that.

I appreciate its a personal decision, but any advice regarding stampede would be gratefully received, as I'm sure you are well aware, getting our heads round all the information is a bit overwhelming at present!  

Best wishes to you.

 

 

 

 

 

User
Posted 24 Nov 2014 at 11:54

Hi ANJ

I have just read the article below and it seems that this is one of the arms available, hope it helps

 

"In the normal course of events node-positive prostate cancer has typically been excluded from clinical trials. This leaves our oncologists with little evidence to guide the management for those of us who have this flavor of prostate cancer.

A recent anaylisis presented at the European Society for Medical Oncology (ESMO) 2014 Congress begins to shed some light on the management of node positive prostate cancer. The evidence presented indicated that radiotherapy (to the pelvis and lymph nodes) added to androgen-deprivation therapy (ADT) improves survival.

In a post hoc analysis of the control arm of the phase III STAMPEDE trial it was shown that the addition of radiation to androgen-deprivation therapy prolonged failure-free survival, an endpoint that included biochemical failure, disease progression, or death, in men with high-risk prostate cancer, including both node-negative and node-positive cancers.
Radiation plus androgen-deprivation therapy should be considered standard of care for node positive prostate cancer just like it is already considered the standard of care for high-risk node-negative men".

Si

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 24 Nov 2014 at 20:51

 

Thanks Si, that does help. My dad is meeting his oncologist tomorrow to discuss the stampede trial further.

 

Am new to this site but have found it very useful already.

 

 

Edited by member 24 Nov 2014 at 21:53  | Reason: Not specified

User
Posted 24 Nov 2014 at 22:30

Hi Anj, I am just starting my my  fourth  month now on Arm J .No side effects and PSA has come down from 124 to 0.8 . There are three  arms to this clinical trial Arm A which is the standard hormone therapy with additional check ups .Arm H which adds radiotherapy to HT. and arm  J which adds Zytiga and Enzalutamtide to HT. As to which Arm you get is down to computer generation.

User
Posted 25 Nov 2014 at 18:08

Hi Paul
Thanks for your message, great to hear that your psa results are looking so good & that you haven't been having any side effects. We saw the oncologist today, my dad will be starting radiotherapy in 3 months. He can still opt for the stampede trial, which will mean either his treatment stays the same or he gets arm J, he hasn't yet decided whether he wants to take part, but will make a decision in in next few days.

User
Posted 06 May 2015 at 09:55

I was diagnosed in January 2015 aged 52 with stage 4 prostate cancer my PSA was 110 and was started on HT the day after diagnosis my PSA was down to 3.6 in five weeks so well happy I was then told there was spread to lymph nodes but not to bones had biopsy was told large aggressive tumour gleason score 8 I was asked if I wanted to go on stampede trials and was chosen for arm J which I started yesterday as far as im concerned I have nothing to lose and hopefully something to gain

Edited by member 06 May 2015 at 09:55  | Reason: Not specified

User
Posted 07 May 2015 at 16:00

Hi Paul
I am also on Stampede Arm J with Enzo and abiterone since February 2015
I have some minor side effects (frequent hot flushes, dicky tummy, tiredness).
I had one more major side effect where one of my liver stats went exponentially skywards and I was told to stop taking the Enzo and Abby tablets. After 2/3 weeks the stat came down and I was asked to restart but on 3 Abby tablets instead of the prescribed 4. The Enzo continues at 4 tablets.
The onco said they see this sometimes. I have my first blood test next week since restarting the tablets
You might want to ask about dosage levels and how the drugs affect you liver.

Stampede is good for getting more frequent tests, reviews etc but extra side effects might be suffered.
I don't regret going onto Stampede but making the decision whether or not to was traumatic and kept me awake at nights

Hope this helps you and best of luck

Paul

User
Posted 18 Jul 2015 at 10:35

Hello

I'm bumping this back up again to see how everyone on this Stampede Group J are doing.

I'm still plodding along after 6 months on the trial with my Psa now at .07 but with hourly hot flushes, aches in the tummy, bouts of diahorea, leaden legs and arms and slightly more tired ( prob due to not sleeping well)

I still try to run but am finding it harder but am persisting.

My ALT liver stat which had gone skyward is now down to 58 (spec is 0 to 40) and my ALP is and always has been ok and is at 89. All my other stats are ok.

My next appointment with my Oncologist is Monday , this after 6 weeks.

I just wondered how everyone else on this trial was doing.

User
Posted 18 Jul 2015 at 18:02

Hello Healy, I have been on Stampede Arm J now for fourteen months, with the only side effect being occasional hot sweats. I still do a 2mile brisk walk every day. My psa has come down from 124 and is now holding steady at 0.1. Its a strange feeling to feel fit and well and yet know that i have Agressive Metastatic cancer.

 

User
Posted 19 Jul 2015 at 15:32

Hello all.

I have been offered STAMPEDE Group A or J, but my Oncologist couldn't recommend whether to do it or not.  I have read up on it (lots of info on http://www.stampedetrial.org/) and have a meeting tomorrow with the Oncology Research Nurse who is running the trial at my local Hospital.  My 2 questions are: quantify benefits of Group J versus side effects / quality of life; quantify effect of delaying RT for 6 months.

At the moment I'm just on Hormone Therapy so currently have few side effects.  Taking Abiraterone, Enzalutamide and Prednisolone all potentially have significant side effects.  I'm concerned if that is going to be more pain for little gain.  I understand that RT will be delayed for 6 months from the start of the trial for Group A or J.  Other studies indicate that RT should be done as soon as possible for maximum benefit.

So a difficult decision to make, will let you know what I decide.

Good luck to all on this journey.

Steve

 

X

User
Posted 19 Jul 2015 at 16:07

Good luck with the oncologist Monday Healey.

Hope all goes well for you

We can't control the winds - but we can adjust our sails
User
Posted 19 Jul 2015 at 18:56
XK8 I would give the trial serious consideration.

The delay in RT is recommended now as it allows the tumour time to shrink before the RT blasts it.

Why not hit it now with everything that you can?

The additional appointments may be reassuring and you can stop at any point if you are not happy.

Lots of men on here are taking part, we did, and do not regret it, but it was a very difficult decision at the time when you are in shock of diagnosis.

Good luck.

Alison

User
Posted 19 Jul 2015 at 21:21

XK8
I absolutely agree with Alison.
I also had difficulty making the decision especially when I didn't know which of the 3 arms I'd be on.
What swung it for me was that its latest medication, it's better support, if you don't like it you can always drop out.
My PCa has spread to hip and was told I couldn't have RT but I'm at 6 months and shall ask tomorrow at my appt with Onco.
Best of luck

Paul

User
Posted 20 Jul 2015 at 21:28
Well I had my latest Appointment with my Stampede Onco (group J) today

My results keep on getting better.

My PSA is now down to 0.04

My troublesome Liver readings ALT is down again to 27 which is the lowest since I was diagnosed with PCa.

Re my stomach pains my Onco has suggested varying dosage in order to try and identify which of the 2 drugs (Enzo or Abi) are the culprits and then she will see if the revised dosage can be made and still keep me on Stampede J.

I came out after the appointment full of optimism and for the first time thinking that the Onco was fully on my side and not just running the Trial.

So anyone having difficulties deciding whether or to join the Stampede Trial I hope this experience of what support is given helps.

Edited by member 20 Jul 2015 at 21:31  | Reason: Not specified

User
Posted 21 Jul 2015 at 17:41

I had a good 1 hour meeting with the Oncology Research Nurse who had the time to discuss STAMPEDE and answer my questions.  Apparently in Eastbourne the Oncologist is limited to 20 minutes per patient although last time I got 30 minutes.  I feel much better informed now so will sign up for the trial.  Don't know if I will get Group A or J yet, but either way the monitoring is much better with regular blood tests, etc. every 2 weeks.  This means that if something does go wrong, then they will detect it and take action.  This is better than maybe every 2-3 months when you see the Oncologist.  You also have an experienced point of contact to discuss any other issues, much better than the GP.  If I get Group J and I find that the drugs do cause significant side effects then I can stop and they will still monitor me.  The radiotherapy is not affected, as soon as my PSA is <1.0 this indicates that the prostate has shrunk and RT can start.

Hope this is of some help to others considering STAMPEDE.

Steve

User
Posted 21 Jul 2015 at 20:42
Hi Steve

Glad that you've made the decision on Stampede

From my point of view I've not regretted going on Stampede and the support is excellent

I'm puzzled though that they run you on the trial until your PSA gets to below 1 and then do RT. My ONCO says I stay on the trial until my PSA starts rising again. (It's currently 0.04)

Maybe this is the new procedure.

A good idea as they say hit the PCs with everything early on.

Paul

User
Posted 23 Jul 2015 at 10:05

Hi Paul

I have had sometimes conflicting advice from different medics.  I'm told that everyone is different because of so many variables.  Suggest that you talk to your speciality nurse and oncologist and ask what your treatment plan is.  Maybe it also varies between hospital trusts.

Best wishes

Steve

 
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