5 years down the road, after being given 3 to 5 years

Latest update:  I had my 6th cycle of Docetaxel just over 2 weeks ago.  The first 4 cycles were quite manageable:  a day or so of feeling tired and under the weather, as if I had a cold coming on, but then I'd bounce back quickly. 

However the last 2 cycles hit me very hard - several days each time of being absolutely flattened with fever, fatigue and sickness.  Even if someone had dropped a bundle of £20 notes on the other side of the room, I would have been too ill to get out of bed and pick them up (seriously!)

Blood test results showed that the chemo did not really reduce my PSA:  before my first cycle it was 34, dropping to mid-20s after two cycles then steadily rising back to 30 at the final cycle.  My alkaline phosphatase did drop, however, from around 120 to under 100.  Based on this, my consultant recommended I stop the chemo, as they felt that further cycles would not improve matters and could lead to further unpleasant side effects.   

So the chemo seems to have slowed the progress of the cancer, but not stopped it.  However, now that I've got the chemo drugs out of my system I'm feeling good again, and January 2025 will be SIX years after being given 3 to 5 years back in 2019.  We'll see how things are at my next meeting with my consultant in early 2025. 

But in the meantime, I hope everyone has a peaceful Christmas, and a new year that's as worry-free as possible.  As my consultant told me when I was diagnosed:  'Try not to make everything about the cancer:  remember to live your life as best you can too.'

Latest update:  my PSA had been steadily rising from 7.3 in October '23, to 8.16 in February '24, to 16.4 in May.  This wasn't a big surprise as  a) I still have a prostate and b) the large met on my spine was still causing pain and presumably still growing.

So I've had MRI and CT scans to see what's going on, and will be seeing my consultant next week to get the current situation report, and to formulate a plan of action (e.g. trials? more chemo / radio? removing the compromised vertebra entirely?).   The good news is, I still feel well and the pain is managed effectively with the right balance of meds.  I'll report back after my appointment.  

Latest update:  I had the tests for the CURATE / TT702 clinical trial, and was nearly accepted onto it.  However, there was a question mark over my kidney function, after the episode of hydronephrosis I had in January. 

Amusingly, I had a call from the trials team at the hospital to say 'we've booked you in for a nephrostomy tomorrow, can you be here at 8:30am?'  I told them that I'd quite like to chat to a consultant about the implications, etc, before a surgical team grabbed me and shoved a drain tube in my kidney  🤣🤣🤣   

On talking with the consultant, she said she couldn't be sure the nephrostomy would actually do the trick in any case, and of course would introduce all sorts of other hassles and risks, so I decided not to proceed and to withdraw from the trial.  

So now I'm focusing on QoL, as I'm currently feeling well.  I have been offered cabazitaxel chemo as a final option, but as I feel I have a good balance at the moment, I don't want to rock the boat.   Spring is here, it's lovely walking and biking weather, let's see what each day brings.

Sorry to hear you're feeling flattened by everything just now Craig, I'm often minded by the Marco Simoncelli quote:

"You live more for five minutes going fast on a bike, than other people do in all of their life" 

I hope you get a fair few more of those five minutes soon. 

Hi guys.

"You live more for five minutes going fast on a bike, than other people do in all of their life.

So true. I only found out recently that when my mates got their bigger bikes ( like over 250) they never ever had them flat out. I was amazed - I had mine against the stop everywhere even my 1000. As I was only a little runt and I had the nice bikini fairing I once held onto an indicated 150mph with a pillion as well. Poor bugger was shaking when we got home as wed done well over a 100 miles like that… 🤣

I used to get told off for overtaking my mate on his 750 Triumph on my back wheel on my 400 Enduro. 🤣

I used to sail my boat like that too. I think maybe I needed the adrenaline as I found out in counselling I had repressed emotions from childhood. 

Regarding my 350 I added the new electronic ignition as the whole contact breaker plate was a mass of rust. But we found we’d got a loose pickup which is unheard of but we had to replace that to get our nice 3 sparks again.

Not sure if I said but I’m writing up my little rebuild as a story to put in the Kawasaki Triples club monthly. If I can store it somewhere on the web I’ll put the link on here. 

Take care chaps, 

Phil

Great to see that therapies are working and you enjoying a good quality of life!
Wish you the best and thanks for your energetic post!

Hi Craig,

I echo what everyone else on here has said. Maybe it’s a pity you hadn’t found this forum earlier, as it’s a great source of information and inspiration, and your story just highlights how keeping a positive attitude is so important in dealing with this disease.

My bike is also my place of happiness, although I now have an ebike which allows me to go further and faster.

I wish you well for the future and look forward to following your story in the years to come.

Derek

All the best Craig!

Had my meeting with my consultant today, and the PSA rise was due to more than the met on my spine:  I've now got a new 2.5cm diameter met on my liver, plus some new smaller mets in various lymph nodes.  Luckily, liver function has not yet been affected so that's a bit of better news.

So it's another 6 to 10 cycles of docetaxel chemo, after which we'll take stock.  Hopefully the chemo cycles will be as predictable (and manageable) this time as they were back in 2019. 

CRAIG380,

Sorry to hear the bad news.  Hope they can whack it and maintain liver function too.

Best wishes,

JedSee.

A knock down for you but not out. You sound like your a strong, positive chap who will kick it back to touch 🤞

Wishing you all the best in you next round of treatment

Jac and Al

Hi again Craig.

Only a couple of days ago, I was wondering how you were getting on. I'm sorry that you've been through such a rough patch, especially as the treatment wasn't totally effective. Thank you for the update.

 I admire your continued positive outlook on life, even in times of great adversity. Have the best Xmas you possibly can mate. 

Edited by member 24 Dec 2024 at 12:24  | Reason: Typo

Good luck Craig 👍

Hi Craig

Your posts are both humbling and inspirational. 

I wish you nothing but good fortune and the very best wishes for the future. 

Gus

Borne the disease with fortitude as old Barry has said, is all too accurate. 

That last pargraph of yours Craig? 

Mighty. F***ing mighty!

Roll on springtime brother.

Jamie.

Hi Craig.

I'm so sorry that you are feeling so unwell.

You do not deserve this, mate.

I wish there was more I could do to help.

Late edit. I presume you're watching the TT racing. I was yelling on Dean Harrison in the Superstock. The lad can't grow a beard but by God, he can ride a bike!

Edited by member 04 Jun 2025 at 21:46  | Reason: Not specified

Hi Craig.

What a dreadful predicament, mate. My heart goes out to you and your loved ones. I  understand your logic.  I think, like you, I would  make the best of the time given to me. You have coped with the awful hand you've been dealt far better than I could have done. 

Hiya Craig. How’s things going? Any decisions as yet? 

Hoping you’re enjoying this weather . Are you able to get out on the bike still? 

I’ve got 3 new coils to go on mine and reset 3 carbs 🤔 and fresh petrol. Then hoping the little minx will start and run well enough to get it up for sale. 

Take care and hope you’re feeling ok 👍

Phil

Hi guys. My bike is a 1973 Kawasaki s2A 350 triple 2 stroke which I bought in 2021 to rebuild and keep me busy instead of moping about worrying about my PCa. Well it was quite a bit worse than I expected and last registered in Vermont in 1979 and looked like it had been kept in a pond since then. But I managed it eventually and it starts and runs but needs fettling now to finish off hence the new coils and better quality throttle cable. Wish I could share some photos. 

I started with bikes at 15 with a Tiger Cub then a slightly tuned BSA 250 . Then my first rebuild a 1958 Ariel 350 when I was 17 as we’d had one as a field bike. It was a real bitza with a Honda 750 seat and BSA tank and wheels. Styled like a US flat tracker. Also polished and smoothed everything inside the engine and fitted an MGA piston with domed head, Amal concentric carb and straight through Goldie silencer . Increased performance significantly but busted a con rod at 80 😬…

Favourite bike 🤔, either my DT400 enduro (‘76) or my Ducati Desmo SS 500 (‘78). But most awesome bike was a ‘79 GS1000 with special seat , lower bars and bikini fairing. Was almost new when I got it.  Went like stink and would wheelie so easy with my girly on the back. She was only 15 and very petite so hardly noticed her on the back till her feet started to lift off the pedals. Sold to go on our first holiday together. Been married 43 years this year. 

I never was in a bike club but used to frequent the biker pubs then. Was in a sailing club though. I had a very fast 16ft racing dinghy which I capsized so many times I wrecked it and so that needed a rebuild too. Luckily the design is ‘open’ so I rebuilt the whole interior differently. I was pretty pleased with myself as it looked and worked really well. Unfortunately the missus wasn’t as keen on the boat so it went …! 

Craig, I was very close to buying a T500 cobra once and also remember the GT380 well. My mates had new Jap stuff but I couldn’t afford anything better than my BSA at the time.
What SV have you got? They get really good reviews. 
Barry , I think I could’ve liked an Xj900 a few years ago. I had a Bandit 600 which was ok but never got me going… ok if you wound it up but rather boring. I also had a DR350 enduro which was fun on the roads and a 250 trials Yamaha for messing about with my son on his TY80 ( which I also rebuilt 🤣).

Anyway, I need a cup of tea and gotta see how the guys doing laying laminate in the conservatory. 

Take care chaps. 
One thing to remember is at least we had our time with the bikes. Some people never have the inclination or even the guts to try ….👍 They missed out. There’s nothing like having your girlfriend hanging onto you. 

Phil

Craig. 

Sounds like good fun sifting through pistons and barrels to get the best match and really good it worked out well. 

I’ve never rebuilt a stroker only 4 stroke singles. But I had my BSA 250 off Pat. As I’d raised the compression ratio slightly from 10.5/1 I needed a supply of head gaskets ready to go on every week. I also used to carry a load of carburettor bits as I was constantly fiddling with the settings 🤣

With regard to nice rides we would put my Enduro and my son’s trials bike on a trailer and drive down to Somerset where we knew a farmer and used his fields. Good fun. But also the roads down there were magic on my Enduro with my 8 year old on the back. Oldest boy would rather go in the car and stay dry… 

My youngest was a natural and straight away I noticed he wasn’t using the clutch . I asked him about it and he just said you don’t need it… 

On the lanes in Exmoor you can brake so late on an Enduro type bike and whip it back up . Absolutely leave a sport bike for dead. And the pubs will welcome you in even if you’re soaking wet and dry your stuff out by the fire.

Great memories. 

Phil

By the way when you receive the file it may need you to click ‘download full file’ or something like that. 

By the way , apologies for hijacking your thread Craig….! And hoping that you’re still feeling ok ? 

Phil

Hi Jenny, 

So sorry to hear about Craig, I have only been on this forum for 4 weeks and Craig was one of the first to share advice and support with my partners diagnosis....shows that even those who have very recently entered this crazy world of PC and all it brings, he was there to offer advice with a dash of humour which resonated with me. Wish you and the family all the very best ♥️