Stampede decision time

User

Posted 30 Nov 2014 at 17:11

Hi All,

Have not posted for a while as we are playing the long drawn out waiting game, work has been very busy, Christmas is on the way and I'm feeling a bit overwhelmed and 'up to my eyeballs'! So it's been a case of head down and get on with the day to day basics, and hope the time passes quickly. I have not had the spare head space to deal with the next issue, but realise that this weekend we have to make a decision, so I would like to ask for your help!

On Tues Dec 2nd my OH will get his CT results to confirm whether or not his cancer has spread further than the locally spread cancer he has already been told he has. I guess this will finally mean he will get his full diagnosis? At the same time we need to decide whether to sign up for the STAMPEDE trial.

From what I have read on this forum most people seem to be in favour of it and reassured by the extra monitoring. I just wondered if there were any negatives to it, other than the side affects that I have read about. Has anyone regretted going on the trial, or not signed up for it for a reason that perhaps I am not considering/aware of?

Would really appreciate any thoughts on the matter, and will let you know how we get on on Tues,

Many thanks,

Miss x

User

Posted 01 Dec 2014 at 11:53

Hi Miss,

I am on the Stampede trial (arm G, now closed) and I took the view of extra monitoring is a good thing, as you have already mentioned.
Also you get a chance of having a treatment that is thought to have beneficial effect on the condition.
Thirdly, you can 'hit the button' at any time and come off the trial. Either due to side effects or even if you don't fancy it anymore.
So, from my view what's not to like as they say.

Obviously it got to be a personal decision but I went for it and it's all been good for me.

all the best

Kevin

p.s. all the best with the results tomorrow.

Edited by member 01 Dec 2014 at 11:54 | Reason: Not specified

User

Posted 01 Dec 2014 at 14:27

Hi Miss,

I just wanted to wish you all the luck in the world for tomorrow. I know how awful the waiting is but you know we're always here to support you whenever you need us.

I can't tell you how much help it was to have the messages from everyone here during my recent heart crisis. My family visited me at every opportunity but at times when I was alone, reading the messages from everyone here, helped through the lonely hours.

I will be thinking of you and your family. Stay strong.

Best wishes,

Steve

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User

Posted 01 Dec 2014 at 11:53

Hi Miss,

Obviously it got to be a personal decision but I went for it and it's all been good for me.

all the best

Kevin

p.s. all the best with the results tomorrow.

Edited by member 01 Dec 2014 at 11:54 | Reason: Not specified

User

Posted 01 Dec 2014 at 13:09

Hi Miss

My Dad had a similar diagnosis to your OH, although Gleason 9, but T3B and starting PSA of 19.7. He finished the STAMPEDE trial a few months ago after 2 years of Zometa infusions every 4 weeks (I think this arm is now closed). He did develop one of the rare side effects of Osteonecrosis of the jaw just before his final infusion so he's now seeing a different consultant for this. However he doesn't regret joining the trial for a minute and he (and I) found the extra monitoring of comfort.

best wishes

Sarah

User

Posted 01 Dec 2014 at 14:27

Hi Miss,

I just wanted to wish you all the luck in the world for tomorrow. I know how awful the waiting is but you know we're always here to support you whenever you need us.

I will be thinking of you and your family. Stay strong.

Best wishes,

Steve

User

Posted 02 Dec 2014 at 18:52

Hi, my OH has Advanced Metastatic, diagnosed Sep 12. He has been on Stampede since the outset. For us it was a good decision as he is seen and monitored by an excellent Oncologist at Airedale General and we just feel we get more attention. He is currently on Enzalutamide.

Hope this helps.

Glen

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