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

User
Posted 23 Dec 2024 at 13:55
Great advice Craig, fingers crossed the chemo his done it's job.
User
Posted 23 Dec 2024 at 16:19

Best of luck Craig.

My chemo didn’t do anything either. We seem to have a few on here lately where it hasn’t done its job fully. I had to stop after 7 sessions as I got so ill and my PSA went straight up when I stopped.

My consultant is now more concerned with quality of life and I don’t really disagree.  And it sounds like you’re feeling good at the moment which is excellent. Keeping that balance is important . 

Have a great Christmas. 

Phil

User
Posted 23 Dec 2024 at 18:30

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 13:24  | Reason: Typo

User
Posted 03 Jan 2025 at 20:00

Hello, I had my first dose of Docetaxel this week to be followed by daily Daromoumide tablets

User
Posted 03 Jan 2025 at 20:03

Good luck Craig 👍

User
Posted 04 Jan 2025 at 12:46

hello

User
Posted 04 Jan 2025 at 15:48

Hello

User
Posted 05 Jan 2025 at 11:50
welcome Mark , might be better starting a new post if you want feedback and disscusion .

Best wishes

Mike

User
Posted 05 Jan 2025 at 12:50

Hello,

will do, was just trying to work out app.

best wishes 

 

mark 

User
Posted 05 Jan 2025 at 19:22

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

 

User
Posted 28 Jan 2025 at 16:39

Finally had my meeting with my consultant, had to postpone it three weeks because of a kidney issue that absolutely floored me, but that seems to be sorted now.

The 6 cycles of Docetaxel I had from August to Dec '24 did keep my PSA suppressed, and CT scans show that it did significantly shrink the met on my liver and a couple of others, too.  However, I couldn't have carried on with it.  My PSA has now risen to 128 (from 33 in December), but that's to be expected as I still have a prostate and multiple active mets all over the place. 

So we crack on for another 3 months, and we'll see how things go.  I may consider Cabazitaxel chemo if I start to get symptoms again, and I've asked to be put forward for clinical trials as they come up:  at the very least, it would be interesting to know what's out there. 

The good news is, I feel healthy, getting my strength back after the kidney problem, going for long walks with my fam (weather permitting) and itching to get out on the bike too (weather permitting).  The nights are getting lighter, the days a little warmer, roll on Springtime!

 

User
Posted 28 Jan 2025 at 16:52

Craig,

I know how naff this must sound, but you are a hero. Good luck mate. 

User
Posted 28 Jan 2025 at 17:30
Very sad story but you have borne the disease with fortitude. You might have had a better outcome had your GP authorised a PSA test when you first asked about one. But let's hope others, (including your GP), learn from this and insist on a PSA and if not authorised either see another Doctor or get one done privetely.
Barry
User
Posted 28 Jan 2025 at 17:37
Keep at it Craig you are doing a great job!
User
Posted 28 Jan 2025 at 21:06

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.

 

User
Posted 10 Feb 2025 at 11:42

Well, that was quick:  I asked to be put forward for consideration for upcoming clinical trials, and I'm going to The Christie tomorrow for blood tests etc to be assessed for suitability.  They must need willing guinea pigs!

Of course, my particular disease progression may not be suitable for upcoming trials, but it'll be interesting to see what's out there.  

User
Posted 08 May 2025 at 18:05

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.

 

User
Posted 08 May 2025 at 18:24

Hi Craig. I must agree with you on QoL as you say you’re feeling good at the moment.And I do envy you getting out on your bike. My days of that are over now. Firstly I’d need to find the energy to do some jobs on the bike and then to be honest I don’t think my legs are strong enough any more. Shame as I really enjoyed rebuilding the little bugger. 

I probably should get the jobs done and sell it on now. 

Keep us posted on your deliberations and musings. It’s good to hear how each of us deals with it all slightly differently. 

Take care

Phil

User
Posted 04 Jun 2025 at 16:43

Towards the end of May I hadn't been feeling well, absolutely zero energy and I'd developed a bloated abdomen and had pronounced swelling around my ankles and feet, together with acute breathlessness after activity.  I suspected this may be ascites, caused by my liver met growing. 

I checked in with my consultant, who requested a blood test.  This showed my PSA was over 1,000 so there're obviously some busy little tumours!  Having an ultrasound tomorrow to see what's going on, and I'm hoping that this does indicate ascites in which case the fluid can be drained off to alleviate my symptoms.  We'll see. 

 

User
Posted 04 Jun 2025 at 19:21

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 22:46  | Reason: Not specified

 
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