I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

Stampede Trials

Email this conversation Print this conversation

User

Posted 29 Jan 2015 at 10:33

A month or so in after the first hormone injection and the PSA is coming down, but I have to decide whether I want to take part in the Stampede trial. The control arm is the same as ever, but two new arms have recently opened up, one gives radiotherapy on the primary tumour, the other combines Abiratone and Enzalutimide (i.e. eight tablets a day, plus a steroid, for up to two years).

Has anyone any experience of either of these arms and, if so, what sort of side-effects have you had to put up with?

User

Posted 29 Jan 2015 at 13:31

Hi there

Sorry you are finding yourself here but in my opinion the help and advice here is precious.

Looking at your age and diagnosis there is probably a great benefit to joining the stampede trial. There are a lot of medical opinions now suggesting that hitting cancer hard when you are relatively fit and strong is a good way forward.

That comes at a price though and that is a possible increase in side effects.

Of course the trial draws the arm you are allocated and that may be the control arm. However you will get much more medical attention and support with more frequent check ups and tests.

A lot of men opt for the trial on the basis that even if it does not work for them it will provide vital data and possible help and solutions for others in time.

Get as much information as you can have a good long think about it,ask as many questions as you need and then decide.

Xxx

Mandy Mo

User

Posted 29 Jan 2015 at 19:47

Hello

My OH went on the STAMPEDE trial and finished the Abiraterone arm last summer, after 2 years of taking the Abi and a steroid.

The additional monitoring that he got and relationship built up with the staff and Onco was invaluable.

The Abi gave a side effect of increased BP and lower Potassium, so he had to take additional tablets to combat these 2 issues and therefore had extra blood tests to monitor this.

I would certainly recommend taking part in the trial.

You may get the standard arm - okay.

You may get to try out the new drugs - no harm done and may even benefit you!

Others, I am sure, will comment as there are a few of us on here with STAMPEDE experience.

The only downside is taking so many medicines each day - but to be honest the 2 years just flew by, and we found the extra drugs reassuring to be on, attacking this disease from all angles possible.

Hope this helps a little?

I do remember though at the time of diagnosis we were in a real quandary as to what to do for the best...and only you can decide after researching it for yourself...

Good luck whatever you decide.

All the best

Alison

Edited by member 29 Jan 2015 at 19:49 | Reason: Not specified

User

Posted 29 Jan 2015 at 22:56

Hi,

I am on the J arm and having both the drugs plus prednisolone. Abiraterone taken when fasting and enzalutamide with or without food. On he trial for two months now. The side effects so far have been hot flushes, weight gain from the steroids and a slight rise in blood pressure.

I am monitored every two weeks being seen by either the research nurse or oncologist. I agree with Alison that the extra monitoring is important and very reassuring.

The advantages of being on the trial are the addition of medications normally given later as initial treatment slows that hopefully will be most benefitiial to me and to other with the same condition and the initial close monitoring.

The disadvantage is the extra nine tablets/capsules I have to take and eight of them are quite large. However it only a minor problem.

I can only say that I am happy to on the trial and would advise anyone to go for it. Remember it is purely voluntary and you can come off the trial at any time if you wish without jeopardising any other treatment.

Hope this helps.

Best wishes,

Davey

User

Posted 30 Jan 2015 at 08:37

I would agree and say go for the trial. If you look at my profile you will see my OH did. He got the HT only arm originally and became hormone resistant after 14 months.

I think you get access to more frequent monitoring and by an oncologist so we would definitely choose this option again.

My OH has had chemo and is now on Enzalutamide and the Oncologist is keen on keeping the PSA low with a good quality of life. Our next update will be 4th Feb.

Good luck and keep us informed.

Glen

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Stampede Trials

Similar Topics

Join the online community now.