PSA SIGNIFICANT INCREASE POST ERT

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 

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.

^ "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Unsurprisingly, agreement rescinded by phone a couple of hours later!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.

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 Your request for injections was probably rescinded when the consultant saw who your GP was.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 

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.

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.

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

Dave.

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

Dave

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 

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.

Not a lot to update! Decapeptyl injection at GPs went like clockwork. Turn up, it's there, quickly and expertly administered, date of next 12 weekly appointment confirmed altho I have to phone sooner to arrange time.

Side effects as expected. Reduced stamina and strength, some muscle ache, very occasional hot flushes.. Being careful with diet, especially protein and vit D, maintaining exercise as much as weather has allowed, plus increased rowing/squat machine time.

22 miles bike ride today. Train for part of way out, but 14 return into a nasty headwind was HARD. Thought I might do a Tommy Simpson after first 10!

I've continued research and the numbers continue to tell me that will v soon be castrate resistant, happily flourishing with nil testosterone. My estimate remains 12-18  months max.

Good luck all.

Dave.

Thanks Chris. Next step, bloods w/c 2 March, see the Man on 9th. This time I shall try insisting i see him in person. And press for a prognosis.

Hope the "holiday" has helped.

Take care, Dave.