Sharing experience of Arm J "STAMPEDE" drug trial
Posted , 6 users are following.
I'm 73 years old, Gleason 4+5, metastatic to bones and nodes.
Initial PSA was 1650 (not a misprint!) and GP warned of distinct possibility of 6 months left to me. I volunteered for "STAMPEDE" research trial and was allocated by random computer selection to Arm J, as compared to alternatives of concentrated short term programme of radiotherapy or else just monitoring whilst on standard LHRH quarterly injections.
Arm J is a combo of Abiraterone, Enzalutamide, and Prednisolone.
So here I still am two years later, having had a TURP to ream out the waterway, easily fatigued and thus rather limited in activitiesbut overall not bad a quality of life in the circumstances. PSA trundles along month to month in mid 20s/low 30s range, so it's certainly not a question of a miracle cure.
I'm not complacent. Things could go rapidly downhill at any time; after all this is a research project to find out whether or not the drug combo works. Whether due to the trial or mere chance, I'm grateful for the two years and will appreciate any more to come, if quality of life remains bearable.
How have other Arm J Stampeders got on?
0 likes, 15 replies
Roger2Dodger textnician
Posted
I admire your attitude and williness to find a way to beat this dreadful disease. I hope the best for you, and hope the research project goes well for you.
Roger
textnician Roger2Dodger
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Pepasan textnician
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Thanks for posting. My cancer is minimal and not as yet requiring treatment, however it is encouraging that research is finding that when cancer is aggressive, there are ways of at least slowing the cancer's progress, if not yet a complete cure. Your participation and sharing are much appreciated.
textnician Pepasan
Posted
I note recent reports about Abiraterone itself (+Prednisolone to minimise side effects) under consideration by NICE for NHS acceptance, so maybe that will be routine, should you ever come to need it.
rocketman42 textnician
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textnician rocketman42
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Many thanks Scott. I aim to be immortal.
Mind you, that would be a bit galling, as I recently won a draw for the most macabre prize ever -- a prepaid funeral plan! -- but there's no cash alternative
(Local health centre held advance planning workshops, attended by a solicitor, an undertaker and a hospice. The undertaker was trying the idea of a prize draw, to see if publicity gained any extra trade)
joeven textnician
Posted
like you I am on the stampede trial, I have a Gleason of 9/10 and a PSA 893, I did the docetaxel, radiotherapy, Prostap, route, my PSA dropped to 0.04 at my last test.
I got told that if my PSA started to rise I have Arberaterone plus another drug to fall back on.
It went into my shoulder and rib, worst might be the after effects of the Meds as I have bad back ache ( not cancerous ) had that checked out, trying different things physio heat anti inflams Chinese oils etc just a devil, still over a year down the line I am fighting this like all of us high gleasons.
Hope you carry on to we all look foreward to seeing this thing kicked out so we can lead a decent life.
i always wondered this is always down to a blood thing why could we never have dialysis and have Meds put into the purified blood as its pumped back into us ?
take care keep going.
joe
textnician joeven
Posted
"all of us high gleasons"
Hey Joe, that makes me feel that I'm in a trendy club ;-)
The bit about dialysis is above my pay grade.Maybe the effect is gained by ongoing daily oral dosage, rather than periodic dialysis?
All the best
Ken
joeven textnician
Posted
Hi Ken
its a club none of us want to be in but life's a devil.
the dialysis was instead of chemotherapy, they could do the dialysis and put the Meds in when the blood is cleaned. Just a thought I've always wondered about.
take care
joe
barney34567 textnician
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textnician barney34567
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Correct, Barney.
I have my mouthfuls of Ab, Enz and Pred every day plus my "Standard care)" quarterly injection.
barney34567 textnician
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textnician barney34567
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Haven't had a scan since first diagnosis, nor anything else other than monthly blood test prior to each clinic. Last year one of these indicated stage 1 Kidney failure, retention resolved by TURP. Since then it's been "Bloods OK" each time, until recent one that indicated low potassium so I have to eat a banana a day, along with anything else on the potassium-rich list.
I'm not very good at asking for specific details of everything, preferring to keep my cancer to one side as just one part of my life, rather than dwell on particulars of results.
Having now googled it, a PSMA PET CT is explained on, e.g.:
http://www.birminghamprostateclinic.co.uk/prostate/assessments/pet-scans-for-prostate-cancer/
Wouldn't seem to have been relevant to me anyway, as I was already metastatic at initial diagnosis.
barney34567 textnician
Posted
I have had a few PSMA scans. They show you the spread of the disease, if any. If say your scan shows the disease not as widespread as in an earlier scan, then that would be good news. Also if the scan showed a cancer clearly say on a bone, when previously you didn't know about that, then you could consider radiation to that bone. That means the hormone therapy you are on will be able to fight cancer too small to show up on the scan. And your PSA should go down.
In your shoes I would ask someone I trust a great deal, ideally a urologist who is not involved in providing you with oncological therapies, if your health would be improved by staying on the STAMPEDE trial or getting off it and keeping to take those meds but adding radiation if needed.
Of course such a discussion should come AFTER you do a PSMA scan to verify if there is anything new in that scan.
textnician barney34567
Posted