Had blood and urine test after (briefly) passing blood (just once). Re-occurrence of previous kidney stone problem suspected (11 years ago). Test showed kidney OK but PSA "elevated". What's a PSA I asked?

No symptoms of any kind, no peeing problems, no pain - age 51 at diagnosis February 18th 2008 - Diagnosed T3b N0 M1b with advanced metastases to entire torso skeleton (bone scan). PSA 153.0 (Jan 08) rising to 214.0 (Feb 08).Gleason 7.

Opted for STAMPEDE (Systemic Therapy in Advancing or Metastatic Prostate cancer: Evaluation of Drug Efficacy) trial and got Zometa & Celecoxib arm. Initially on Zoladex but now on Decapeptyl and 50gm Casodex.

Unusually for HT (Hormone Therapy) patients I have virtually no side effects other than loss of body hair and dry orgasms. Still playing soccer and rugby and living life to the full :-)

My PSA had been climbing slowly but steadily all of 2009. It had never gone sub 1.0 and is now 19 and probably higher. The consultant did switch me from Zoladex to Decapeptyl (Triptorelin) a few months ago but after an initial response the PSA just started to climb again. Casodex 50mg just doesn't seem to work for me either.

The good news is that my testosterone has never been at castrate level, bottoming out at 1.6 nMol/L and now at 4.0 nMol./L. The PSA has always followed the variation in testosterone so the oncologist does not think I am hormone refractory (yet). Today (Jan 11th 2010), I started on Degarelix (Firmagon) with a 240 mg double injection. I expect to lose libido (something Zoladex never did to me) but this is a small price to pay if the PSA comes down.

Still playing soccer and rugby and loving life. My stomach hurts a bit but then no pain, no gain! I'll update in a few weeks :-).

Now on my 3rd shot of Degarelix (although the technically 1st one is triple strength). The injection site reaction is noticeably less and not much worse than Zoladex. The first two injections were very unpleasant and took up to 10 days to settle down.

Despite the new treatment PSA continues to rise alarmingly - now at 40. Initially the Degarelix got my testosterone down from 4.2 to 1.9 nMol/L but it's now gone back up to 2.7 so not as much success as I had hoped for. On the plus side I still have a reasonable libido despite two years of HT and the oncologist still thinks my cancer is hormone sensitive, hence we are discussing an orchidectomy if the drugs can't get my testosterone down to castrate level.

Still exercising regularly and feeling great.

Degarelix was proving more and more painful without any improvement in results. Each monthly injection left me sore and unable to train / go to the gym for at least a week (bit like having a duck egg appear under your skin every 4 weeks!). The PSA rose relentlessly until by July 2010 it had hit 117. Testosterone stubbornly refused to come down much below 2 to 3 nMoL/L and an Orchidectomy was provisionally scheduled for September.

In an experiment (not 100% agreed with the Oncologist but we'll not go there ...) I started 1.0 mg of the steroid Dexamethasone and stopped Casodex. A month later the PSA exponential rise slowed dramatically to 124 before heading rapidly downwards to 65 the following month. Oncologist also agreed to abandon Degarelix / Orchidectomy and I elected to return to Zoladex. My testosterone also went castrate for the first time ever at < 0.7 and the PSA continues to fall, now at 6.4.

Side effects are minimal, mainly putting on about 4 or 5 pounds (which I know I can lose). Despite the low testosterone, I remain fully functional with a reasonably good libido and decent sex life :-) Still playing rugby & football, still full of energy and no symptoms despite the mets.

They say all good things must come to an end and thus is the case with me and my steroid (Dexamethasone). To be honest it's been a brilliant last 20 months - great stability, PSA levels of 3 point something every month, almost to point of complacency. I've had wonderful holidays and a "PCa free" period in which I almost felt "normal".

Christmas 2011 saw me getting 10 Gy of radiation to a bad bone met in the upper left femur. This had been causing me pain and interfering with my QoL. The results were brilliant and other than an itchy bum for a week or so, it was a breeze. Things started to go bad though in the last few months. PSA, which was so stable, just started to rocket. First to 11 and then 19 - time to act.

My oncologist is keen to start Chemo (Docetaxel) and I have agreed to begin the first of 10 infusions on July 19th 2012. I'm hopeful that this will "nip it in the bud" but even if it doesn't, I'll be eligible for Abiraterone on the NHS. I've just had a new all body bone scan which as revealed a lot of pelvic activity. As a result (and also because I now have a niggling sciatica like pain in the left buttock, I have had 8 Gy to the L2 / sacrum region.

Oncologist has organised a CT scan in the next few weeks to check for soft tissue damage but we are hopeful that it is confined to bone. If this is the case then we will hit this bloody disease with everything in the box! Worrying times but I've already well outlived my prognosis so bring it on ...

Chemo (Docetaxel) worked really well and drove the PSA to sub 1 for the first time ever (0.84). I had hoped for a respite but shortly after the 10th cycle the PSA began its ominous climb. My oncologist set a limit of 15 to 20 and at that point (July 2013) I started Abiraterone. It's far too early to say if it's working but the bigger news is that I have been offered access to Alpharadin (Radium 223) on an early release programme and will start this (in conjunction with Abiraterone) on August 7th. The sporting activity has been toned down not because of the cancer but because I am approaching 60 and really need to act my age :-)

Libido intact despite Abiraterone and Zoladex.

[In response to a reminder, Allister wrote:]

I had replied that I was going through a delicate patch and would update ASAP. I have now finished negotiations with my life insurance company (had been at a sensitive stage) and am now resigned to my fate. Terry would have understood. I deeply regret his passing but my own will not be documented on YANA. Those of us with metastatic disease and impending doom do not appreciate the pressure. We occupy the moral high ground and envy those who survive this awful disease. I will continue to fight for men in the UK to my last breath, but I will not be posting any further information on YANA.

[... and we will respect his wishes.]