question about Stampede trial

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User

Posted 18 May 2015 at 11:51

Here for my bro aged 54, recently diagnosed locally advanced Pca PSA 150, Gleason 4+3, stage T3a. He was started on Zoladex last week and will be reviewed in 3 months with a view to possible radiotherapy. We've been thinking about going on the Stampede trial but I'm a little concerned that he might get the arm where patients receive hormone therapy only, meaning he loses the chance to have any other treatment. This doesn't seem to be a risk worth taking or am I not understanding things correctly?

User

Posted 18 May 2015 at 14:45

Hi BIg Sis

Not sure what has happened with your previous post which was a similar question, but the Stampede trial always includes the standard treatment ( that he would get if not on the trial) and possibly the addition of some other drugs depending upon which random arm he gets allocated. The very least that he would get on the trial, would be the treatment that he would be getting anyway.

It would certainly be worth seeing the trial nurse to ask all of your questions.

Not all hospitals are enrolled to do Stampede though, they would normally offer it to you if it was available and your brother eligible. Worth asking though as the extra monitoring that you get can be reassuring and offers a good way of building up relationships with the oncologists and other key staff.

Hope this makes sense?

Alison

Edited by member 18 May 2015 at 14:48 | Reason: Not specified

User

Posted 19 May 2015 at 08:02

Hi big sis sorry to hear about your brother I was recently diagnosed in January 2015 after only going gp due to slow pee flow I never see it coming never felt ill although my wife noticed weight loss my PSA was 110 after scans I was told it had spread to my lymph nodes my gleason score is 8 I was started on hormone therapy immediately and with in 5 weeks psa was 3.6 its since fell to 2.3 I was offered stampede trials and luckily got the arm I wanted arm J on the4th may 2015 but I know how your brother feels because I was convinced id get the HT one with no other additional benefits but eventually I thought I have nothing to lose and decided to go for it I will say you receive very good care when your on the trials im off today for blood test you have them every 2 weeks to monitor your liver good luck with what ever choice you make regards steve

User

Posted 19 May 2015 at 08:31

Big Sis

You can pull out of the trial at any time if you do not like it.

Alison

User

Posted 19 May 2015 at 13:56

Thank you Alison, in that case maybe if he just gets the control arm (HT only) we can say no thanks. Steve, it seems to be going well for you and thanks for the advice. Wishing you all the best.

User

Posted 02 Jun 2015 at 12:39

I have locally advanced PCa and have lymph node involvement. I've been on the STAMPEDE trial control arm for the past 21 months. I have 12-weekly injections of Prostap (similar to Zoladex) at my GP surgery and have had 37 fractions (74 Gray) of RT over 7 and a bit weeks at the hospital where I'm monitored by the Stampede team. When I started Stampede I was given a 5 year schedule of appointments, intially 6-weekly, now 12-weekly and 6-monthly from the autumn.

Before joining Stampede I had several lengthy consultations on my condition and how Stampede might benefit me. I also ensured that I was going to receive IMRT radiotherapy which has fewer side effects and possibly a better outcome. I ensured that I was going to receive RT to both my prostate (curative intent) and affected lymph nodes (a lower level of RT to reduce the risk of damage to the bowel). I have only recently discovered that had I not joined Stampede I would not have been offered RT to my lymph nodes - I have now been told that this is only for trial patients. So, I obtained more than the standard treatment offered to patients who are not on the trial. I have also had the reassurance of regular consultations which provide plenty of time to discuss one's condition and treatment options. I'm even seen on time, every time!

To my mind joining Stampede, even the control group, is a no-brainer. I'd be delighted to hear what other treatments are available to locally advanced non-Stampede patients. Your brother would be free to leave Stampede at any time.

Also, trials are meant to benefit those who will face the ghastly experience PCa in the future, not just the patients on the trial. It's worth joining for their sakes!

User

Posted 02 Jun 2015 at 17:57

Can I just second what Dartview has just said. My OH had RT to pelvis too, although I did not realiae that this was STAMPEDE related. He too had Lymph node involvement.

We got the Stampede Abiraterone arm, but would have stuck with it if the control arm was gotten, In fact at the time we were sort of hoping for the control arm, as it would have been simpler, but I do remember that at the time of diagnosis we just did not know what to do.

Alison

User

Posted 03 Jun 2015 at 09:45

Hi Bigsis, i was diagnosed in Nov 2009 with widespread mets to bone and lymph nodes with a psa of 1730, i was 47 at the time. I took part in STAMPEDE and recieved h/t, chemo and Zometa.My psa fell to 0.6 and stayed low for 2/3 years but has now slowly risen to 18. I was re-scanned and the result showed that the lymph nodes were now clear to everybodys amazement. I have continued to work and still feel well. Will probably start new treatment at end of month. I feel the early involvement with chemo helped me greatly and it would be worthwhile taking the chance with STAMPEDE. Good luck and God Bless

User

Posted 03 Jun 2015 at 13:33

Thank you for your recent posts, it does give me hope that Stampede is worth doing even if he gets the control arm. You seem to be doing well! I think he has a meeting with the oncologist next week to discuss it and will try to be there with him.

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