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Arm j stampede

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User
Posted 26 Sep 2016 at 12:40
Just would like some feed back on anyone on arm j of stampede trial ,OH had early chemo which went with minimal side effects still working throughout ,he now has been on arm j for approx 41/2 months with main symptons tiredness and pains in both he's Achilles .has anyone had similar problems and how you coped with them .
PSA has been at 0.01 for quite a while now so it must be helping ,Also now on 8 weekly app with 4 weekly blood tests ,which is slightly worrying waiting but knowing someone is at the end of phone if needed
Thanks for any info
Debby
User
Posted 27 Sep 2016 at 14:15

Hi Debby
It's me again.
I'd not heard about the trial finishing in 2020. When I asked my onco about how long it goes on for she said for as long as it's working. If the enzalutamide does stop working she also assured me that they wouldn't just drop me. What I'd go onto I suppose depends on how I am and what's available.
I do believe that I would have more choices the fitter I am.
It's a bit tricky since the medication wears you down but you need to keep as fit as possible to have the best chances.

I'm very interested in the metamorphin.???? As it sounds to do the right thing. I'll ask my onco about it thank you about the heads up. You can always ring the Stampede nurses if you've any concerns.

Going on longer apps is a bit daunting at first but you learnt to not think about the PCs as much and it gives you chance to get on with your life.
I take it as an opportunity to try and be normal. 😎
Take care and keep posting.

Paul x

User
Posted 27 Sep 2016 at 17:22

Yes I've just been looking it up found a good article on web www.harvardprostateknowledge.org Quite interesting
Debby

User
Posted 19 Oct 2022 at 08:24
Tricky dilemma I suspect you have become quite attached to those medicines given the amazing remission you are both enjoying.
I guess this is one you have to trust to the professionals.

I would ask one question though why stop the enza and not the abi?? Is that a cost decision as abi is off patent now??
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User
Posted 26 Sep 2016 at 13:55
Hi Debby
great to see things are going really well, aches and pains in achilles are pretty commonly mentioned as a result of any HT, I guess having combination of both abi and enza may increase the chances of this, Worth mentioning to your consultant next visit though. I guess your OH's work is also very physical with a lot of lifting so that may put more strain on his than others. My Nan would have said back straigh knees bent when lifting but Im pretty sure that is to avoid back injury more than over stretching the achilles!

I believe the monitoring via 4 weekly bloods and 8 weekly Onco appt. is up to the trust giving the treatment. Usually the trial teams involved set a standard so that data collected is all being compared in the same way. Also these are very expensive drugs so I guess if they stop working they want to know sooner rather than later?
In metastatic patients the guidelines are that both dugs should be continued with 5mg Prednisolone until progression occurs. I hope someone else can accurately define that for you but I think it means a combination of PSA increase + evidence of tumour growth or spread.
Healey and XK8 are two regular posters both currently on arm j I think.
I hope it helps a bit until you get a more involved party to respond.
Best wishes to you and your family
xx
Mo
User
Posted 26 Sep 2016 at 14:06

Thankyou Mo ,everything still whirling around in my head but learning not to think about it 24/7 .just back from a well deserved holiday a bit more positive and relaxed X
Debby

User
Posted 26 Sep 2016 at 21:55

Hi Debby
I've now been on arm J for 20 months and my psa was last measure in August at .04
Still getting fatigued, still getting hot flushes.

I now have suspected angina so my running has been put on hold.
I don't think this was brought on by the medication but more a hereditary thing.
My onco team checked whether the enzalutamide aggrieved my heart it but they said it didn't. Had it have then I would have been off the Stampede Trial.
However they did mention that the abiraterone (which I now don't take) does have some bad effects on the heart. You might just want to check with your oncologist.

I'm currently monitored every 3 months now and the only time I get anxious is 2 weeks before the appointment.

Your OH sounds to be in good hands, his psa at .01 is fab. The longer consultations mean his onco is happy with the progress.
Get planning your next holiday and enjoy every day one at a time.

Paul x

User
Posted 27 Sep 2016 at 08:47
Thanks Paul ,I've read that the trial finishes in 2020 (hopefully still on it ) do they stop the meds and put you back on S O C or wait for any results data or if any other meds are better transfer you over ? Also they've introduced arm k metamorphin???? That is ment to kill cells rather than surpress them ,I wonder if that may be something that could be added if they see good results .
OH Has only just gone onto 8 weekly apps ( still 4 to go ) it's a weird feeling you want to be seen 2 weekly as before even though you know longer periods between as you say must mean that they are pleased with progress ,it's almost like a sercurity blanket ,we felt the same when chemo finished .
I'm glad your doing fine thanks for the response
Debby
User
Posted 27 Sep 2016 at 14:15

Hi Debby
It's me again.
I'd not heard about the trial finishing in 2020. When I asked my onco about how long it goes on for she said for as long as it's working. If the enzalutamide does stop working she also assured me that they wouldn't just drop me. What I'd go onto I suppose depends on how I am and what's available.
I do believe that I would have more choices the fitter I am.
It's a bit tricky since the medication wears you down but you need to keep as fit as possible to have the best chances.

I'm very interested in the metamorphin.???? As it sounds to do the right thing. I'll ask my onco about it thank you about the heads up. You can always ring the Stampede nurses if you've any concerns.

Going on longer apps is a bit daunting at first but you learnt to not think about the PCs as much and it gives you chance to get on with your life.
I take it as an opportunity to try and be normal. 😎
Take care and keep posting.

Paul x

User
Posted 27 Sep 2016 at 16:32

Metformin comparisons is the Stampede K trial and it should have started recruiting April 2016 I believe.

Paul

User
Posted 27 Sep 2016 at 17:22

Yes I've just been looking it up found a good article on web www.harvardprostateknowledge.org Quite interesting
Debby

User
Posted 18 Oct 2022 at 17:36
Hi all , it’s 7yrs since Gary’s diagnosis 4+5 spread to lymph nodes and 6.5 yrs since being on the stampede trial arm j .
The trial consisted of 4 each of Abiraterone and enzolutamine plus a steroid, the trial finished earlier this year with good results ( Gary’s PSA has consistently been undetectable) . He was advised that he could stay on the meds ,but now they’re withdrawing the Enzo as data shows no extra benefit from both . Anyone else had this ? And also what reactions if any has there been . I’ve often wondered if he was being over treated .
It would be good if it could help with the fatigue he suffers . He still works but the tiredness is a big problem.
Best wishes to everyone.
Debby
User
Posted 19 Oct 2022 at 08:24
Tricky dilemma I suspect you have become quite attached to those medicines given the amazing remission you are both enjoying.
I guess this is one you have to trust to the professionals.

I would ask one question though why stop the enza and not the abi?? Is that a cost decision as abi is off patent now??
 
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