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Fear of what happens when ADT ends? and Rhovac trials

User
Posted 05 Apr 2021 at 13:50

Hi - its been a year since I last posted, had my Salvage RT late 2019 and still on hormone injections due until September 2021.  The hormones have kept me undetectable since the SRT until now thankfully.  But I am pretty scared about progression when I come off the hormones.  I guess that fear will never go away and we have to live with it.

I recently read about a vaccine being developed and trialled by a swedish company called Rhovac which has had small trials and is currently being trialled in the UK phase II as well as elsewhere by a swedish company specifically to prevent Biochemical Recurrence, and when I spoke with my Oncologist about this she said she looked into it and unfortunately being on ADT disqualifies you from participation, and even when and if their vaccine is approved, it will be approved for use in the biochemical recurrent setting, which means it sounds too late for me. 

I was disappointed  when I heard this because I had (perhaps stupidly) allowed myself a little hope that this vaccine might give me a bit extra in the fight post ADT.

Anyway, a bit low at the moment but I remind myself to be grateful for being fit and healthy at present and undetectable right now, to focus the here and now, and to redouble my efforts to do exercise, as I have become a bit demotivated of late.  Mind you the gyms will be opening again soon so that will help.

All the best to everyone on this site.

 

User
Posted 05 Apr 2021 at 21:18
Cross that bridge when you come to it, you don't know it's failed yet
User
Posted 05 Apr 2021 at 21:25

Give peas.

I was accepted into the phase 2 Rhovac trial, then got a phone call the next day to say the was an issue with the PSA rise and I couldn't go on it. I got a second chance but my PSA mysteriously dropped and again I wasn't accepted. I then had a third go and my PSA stalled so not sure if I meet the criteria.

It is a three trial so I expect it will still be years before anything comes of it.

I do try and stay positive.

Keep going.

Thanks Chris

User
Posted 05 Apr 2021 at 22:55

I had salvage radiotherapy and 18 months of hormone therapy.  My PSA has been undetectable ever since.  I still worry each blood test, but I’m in a very good place.  Fingers crossed things have worked as well for you.

User
Posted 05 Apr 2021 at 23:06
John is coming up to 9 years post salvage RT. Don't waste today fretting about what might happen in the future
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Apr 2021 at 00:24

I have had RT and two years of HT. I have now been off the HT for a year, but only just noticing that testosterone is back. So next psa test I will almost certainly be no longer undetectable (I still have a prostate). Am I worried about the future? No. The oncologist says if/when psa goes above 2.1 then we need to look again. Until that time I really can see no benefit in worrying about something that may not happen. 

Dave

User
Posted 06 Apr 2021 at 18:28

Yes thanks thats what I have to do of course.

User
Posted 06 Apr 2021 at 18:42

Thanks Chris - yes I think the criteria for the Rhovac trial are quite stringent and specific as per the attached link.

https://clinicaltrials.gov/ct2/show/NCT04114825

It sounds like they cant tell whether it works or not if one is on ADT or that the ADT would affect its efficacy in some way.

Anyway, I hope you get accepted.

Cheers

User
Posted 06 Apr 2021 at 18:43

Thanks Ulsterman thats encouraging.

User
Posted 06 Apr 2021 at 18:46

Thanks Dave appreciated.

User
Posted 06 Apr 2021 at 18:51

I know you are right Lyn but its not always possible to turn off the what if's.   Glad to hear about your other half's experience which has been so successful so far.

 
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