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PSA SIGNIFICANT INCREASE POST ERT

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User
Posted 01 Dec 2025 at 08:37

Consultant day has arrived. Two key pointers should emerge. PSA after 1 month of single HT  - some research suggests could reduce by 64%. Any reduction good. Continuing increase could indicate already castrate-resistent.


Bone density from DEXA an indicator of vulnerability to HT.


Choice doublet HT or surgical.


Almost annoyingly, I feel fine! Cycling on Saturday was more endurance exercise than enjoyment, but 25 miles in cold wind and rain often is! Met up with Club Ride at lunch stop  -  only 5 out against usual "good" weather of at least 12. Light weights!!


Onward and downward....


Happy December all.


Dave.

User
Posted 01 Dec 2025 at 15:18

Better than hoped for....


PSA down 80% from 4.5 to 0.95 after just 4 weeks of decapeptyl. Such a rapid decline an excellent indicator. Testosterone down from 25.4 to 0.7. 


Other bloods fine.


Bone density mainly normal except for some weakness in lower back  -  have left decision on 1 infusion of Zometa per year until next appointment in 3 months time.


Adding NUBEQA/Darolutamide rather than Erleada to the decapeptyl because seems to have less adverse effect on thyroid and seizures.


Have to say more optimistic. Best I now read the stats is 82% probability of survival at 2 years. I do think having kept active into my old age can only have helped.


Junior Consultant said my having a good knowledge of the (and my) situation made his job easier! How nice.


Onward on the level for now....


Good luck all, Dave 

User
Posted 01 Dec 2025 at 15:42

Hi, Dave.


A good result, long may the decline continue. It's nice that you're managing to feel a little better and a bit more upbeat.


Good luck, mate.👍

User
Posted 01 Dec 2025 at 15:55

Thanks Adrian. Median decrease in initial 4 weeks is 62% so 80% probably about as good as it gets. 


Also secured agreement to having 12-weekly decapeptyl at hospital rather than GPs.


Next Consultant appointment confirmed for early March. 


Good luck all.


Dave.


 


 

User
Posted 01 Dec 2025 at 17:36

Dave ,good to hear. 


Thanks Chris 

User
Posted 02 Dec 2025 at 09:04

^ "Also secured agreement to having 12-weekly decapeptyl at hospital rather than GPs."


Unsurprisingly, agreement rescinded by phone a couple of hours later! Will have to face bother of making appointments at GPs.


More generally, I checked the costs of my meds to the NHS. Mistake. Now I just feel guilty that such sums being spent on 77 y.o. me while NHS overall so strapped for cash that my peers stacked in corridors in squalor and children not getting e.g. the mental health care they desperately need. 


Surely not right in the wider picture?


Dave.

User
Posted 02 Dec 2025 at 09:32

Originally Posted by: Online Community Member
More generally, I checked the costs of my meds to the NHS. Mistake. Now I just feel guilty that such sums being spent on 77 y.o. me while NHS overall so strapped for cash


Morning, Dave.


My Invicorp prescription costs the NHS about a hundred and fifty quid a month. I think it's worth every penny. The wife thinks it's poor value for money. 😁

Edited by member 02 Dec 2025 at 09:49  | Reason: Typo

User
Posted 02 Dec 2025 at 10:30

Dave , the repeat appointments for the injections are not as bad as making normal appointments, the only issue is that after the injection the nurse cannot book the next appointment because it is a day over 12 weeks. I got a reminder for my next injection a week after the injection. Your request for injections was probably rescinded when the consultant saw who your GP was.


I know what you mean about the cost of drugs mine cost a fortune. 


Thanks Chris 

User
Posted 02 Dec 2025 at 22:54

Nice line, Adrian!


Dave.

User
Posted 02 Dec 2025 at 23:06

Thanks Chris. Does the surgery source the injection or do you have to request a prescription, collect from pharmacy and take to appointment with you?


Regards, Dave.

User
Posted 03 Dec 2025 at 00:31

Dave , first time I ordered the injection, collected from pharmacy, took it to the surgery and the nurse said  "why have you got that ,we order it in, you don't need to get it". So now I just turn up and it's already there. 


Thanks Chris 

User
Posted 03 Dec 2025 at 07:59

Thanks Chris. Guess I'll confirm this when I try to make an appointment! Last time around, but pre-take over, my surgery also got it in ready.


Regards, Dave.

User
Posted 03 Dec 2025 at 08:58

Dave , just remembered, when I made the appointment, the receptionist told me I needed to come in and collect the paper prescription and take to the pharmacy. They wouldn't do it electronically because of the value of the injection.


Thanks Chris 

User
Posted 03 Dec 2025 at 09:07

Thanks again Chris. I assume the pharmacy then delivered direct to surgery.


Dave.

User
Posted 03 Dec 2025 at 11:30

Dave, no I had to collect it and keep it at home, then take it to the appointment. It did say store below 25 degrees and we were in the middle of a heatwave. I don't think it could be put it the fridge. I did find a cupboard that was below 25 degrees.


You can always talk to our mutual friend if needed 😃.


Thanks Chris 

User
Posted 03 Dec 2025 at 12:12

Chris, at the branch on the Hill they used to deal with everything! Never mind....thanks.


Dave

User
Posted 18 Dec 2025 at 22:36

Pre-xmas up date....not a lot. 8 weeks since 1st decapeptyl shot, nearly 3 weeks since started darolutamide. Nothing unexpected, maybe a little more easily tired. Next decapeptyl lined up for 19th Jan (fingers crossed that Surgery keeps its word!). Next psa early March when back to Consultant.


I had said I'd decide about Zoledronic acid annual infusion at next appointment, but having now seen at least a summary of Dexa findings in hospital leter to GP I have decided "yes" and asked about bringing it forward.


It does seem to me that even allowing for advances since 2021 my original treatment was not optimal. Not helped by poor performance by GP.


Am where I am. Having done extensive research, convinced my original prognosis of 12-24 months correct, if anything on the optimistic side.


For various reasons won't be seeing children/grandchildren at Xmas. Saddening if last, but shall have as good a time as is possible  (for a non-drinking alalcoholic!).


Merry festive season all, and better new years!


Dave.


 

User
Posted 19 Dec 2025 at 18:06

Hi Dave had my decapeptyl last week all went like clockwork. Sorry to hear about the kids , not seen mine or my grandchildren for many years. 


Merry Christmas to you, thanks Chris 

User
Posted 19 Dec 2025 at 18:22

Thanks, Chris. Hope for my shot(s) then!


Sorry about the family. I'll see son over the hols  -  he's only in Carlton! Daughter and little ones live in Netherlands and just bought a new house so I assume having main Xmas there.


May your festive season be gentle and easy!


Regards, Dave.

User
Posted 22 Dec 2025 at 09:52

Hmm. I rather wish I had left well alone until the NewYear, but having revved up my research head, I have looked again at my recurrent psa levels, the nature of the metastatis and response to initial HT treatment. 



2.9  -  4.5 is low for extensive spread -  this is NOT a good sign. Rather it is an indication of a likely speedy progression to castrate resistant. As is the magnitude of the drop in psa from 4.5 to 0.95 after only 28 days.

Add in original psa of >18 and Gleeson 9 and the most optimistic survival time I can find is 32 months, the least 13 months. Both include the 5 months that have already passed since I hit 2.9 on July 2nd.

Only because not found in bones by psma pet (but that was some weeks ago now!) my most optimistic prognosis is that current HT cocktail will fail within 12 months from now.

Low psa is not necessarily a good sign. Although rare, there are well documented cases of constantly negligible psa with massive fatal spread. 


Got to be 50/50 that my last Xmas...


No, this not a mood swing, simply findings of deeper dive research into research! I have filtered sources and made my best judgement of robustness and trustworthiness.


Best wishes to all for festive season and good luck for 2026.


Dave.


 


 


 
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