Stampede - arms J and G

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User

Posted 22 Mar 2015 at 12:17

Hello all.

I've signed up for Stampede and been allocated Arm J, hormone treatment plus abiraterone and enzalutimide.

The unanswerable question is whether this will improve my overall survival times, or whether having the drugs up front means that they will be ineffective as later treatments.

A couple of questions for you guys:

a) does anyone know of the pre-clinical work done on this trial - specifically what the evidence suggests will happen in terms of survival times? There's got to be some reason why they're testing this rather than it being just a hunch.

b) was anyone here on the Arm G trial (hormone plus abiraterone) and, if so, what was their experience? Has anyone had abiraterone again after coming off the trial and was it still effective?

User

Posted 23 Mar 2015 at 08:53

Hi armiston,

I'm on arm G, HT plus Abiraterone.
I've been on it for around a year and a half, the trial should finish for me this summer.

I can't say I've had any negative experiences while being on this arm beyond the standard HT type stuff.
I can say I've had positive experiences though.
Being a bit of a geek I found a PCa app for my iPad. Amongst other things it allows you to map your PSA results and display them on a graph.
I first started HT and then the abiraterone was added after all the formalities were sorted, so I had some time on HT only before hitting the trial.
The big thing I noticed was that being on HT mapped a definable curve (happily downwards) but once I had the abiraterone in my system the graph took a distinct trajectory downwards again defining a new mappable curve.
I soon hit the bottom and I'm happy to say I'm ploughing a furrow all along the bottom for some time now.

So, I'd say abiraterone hit the PCa separately and in addition to HT, with beneficial results.

As to survival times? Who knows.
I presented with a PSA of around 500 at diagnosis.
I was given a prognosis of three years. (That statement is a can of worms to be discussed elsewhere)
I'm at around the two year mark and my PSA has sat at 0.01 for a while now.
I think I'll be still be pre mets at my three year mark judging at my current performance, fingers crossed.

As mentioned, my two trial years will be up in the summer, I'll be back to HT only.
I'll be interested to see what happens without the abiraterone input.

In the meantime I've also had RT so that also needs to be added to the mix...

What I have is MY PCa, what you have is YOUR PCa.
The journey is likely to have differences, there are so many factors to consider beyond just the treatment.

I take heart from the old campaigners on here, some hitting over ten years and still living life to the full.

All the best

Kevin

User

Posted 23 Mar 2015 at 09:51

Hello!

My OH was on the Abiraterone arm too.

He had HT and RT (37 sessions IMRT) in tandem with the 2 years of Abiraterone. He is still on HT almost 3 years later.

Side effects of the Abi were low potassium (that he was given medication to bring up) and high bp (which he was given medication to bring down)...so basically a lot of pill popping at different times and throughout the day.

The Abi tablets were like 'horse pills' as he had to take 4 each morning.

It is difficult to say what the side effects were for each part of the treatment as we did not really know but he was tired, lethargic and put on weight.

I do not know of any pre-clinical evidence. We were just told that they wanted to see if drugs usually given later in the disease worked better if taken earlier. Hitting it harder at the beginning I suppose. I do not know if we will get the Abi again later if needed, or indeed the Enzi as this is an ongoing problem to do with the NICE/Government guidelines. I think a lot depends upon your Onco's opinion and authority.

We did feel that the extra appointments were reassuring and helpful in terms of diagnosing/ruling out other symptoms over the period, and these appointments are ongoing now for us 6 monthly.

Best of luck with your research.

Alison

User

Posted 25 Mar 2015 at 14:24

Hi Armiston
I'm also on arm J of Stampede.
I started HT (Prostap) on abt 6 Jan 2015 and the Abby/enzo cocktail on 16 Jan.

I looked for trial results and asked the same questions re why mix all the treatments now.
I must admit to being wary about the relevance and wondered how the drug companies were involved in the trial.
I didn't really get any good answers but thought logically that it can't hurt and the support is better.
So far I'm at 0.32 but for how long I don't know.

Everyone's different and react differently but at least we are on the best drugs available so far.

All the best

Paul

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