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User
Posted: 14 Jun 2025 at 18:51

Hi Craig.

 

So sorry to hear this news. I’m not going to advise but understand your reticence to go on the cabazitaxel. I had bad experience with Docetaxel too and it didn’t do much. 

I hope you can make that decision and that it works for you. We’re here to listen whatever you need to say or ask or rant. 

Thinking of you buddy . Best of luck.

 

Phil

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    User
    Posted: 14 Jun 2025 at 13:43

    Had a good, frank discussion with my consultant:  basically, that liver tumour is too large for radiotherapy, and my overall disease burden is getting too weighty.  My last remaining option is cabazitaxel chemo which might possibly slow things and buy me a little time. 

    However, I've looked at the research stats, and it's very much a gamble.  I'm asking myself, what kind of time is the chemo buying?  Days on a ward having bloods and infusions, and days in bed at home, flattened and feeling like crap (based on my most recent experience with docetaxel chemo)?  Or would I rather enjoy the sunshine and make the most of the good days? 

    I haven't decided 100% yet, but I'm currently leaning towards just carrying on with my day-to-day and having no active treatment.  I suppose there's no right or wrong decision here:  it's just a question of choosing a path. 

     

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      User
      Posted: 14 Jun 2025 at 10:59

      Hi Phil.

      Glad your PSA still coming down. Shows the Cabazitaxel is working. I did get a week or so of bone pain after starting the Radium so started taking co codamol at bed time and seemed to work. I take them every night now. You may recall I changed Hormone therapy at the same time I started the radium so don’t know if that made any difference. I changed from Degarelix to Orgovyx. Definitely better having pills than the monthly injection which could be very painful and caused bloated stomach.

      My consultant said the other day he’s pleased the Radium seems to be working as there’s only Cabazitaxel left in the box now. 😳

      Feeling a bit tearful today but I’ll get over it. Friends coming round tonight and we’re getting a takeaway… I’m hoping I can at least stay in the same room or even have a few mouthfuls… Had a bad day yesterday with taste / gagging and so didn’t eat much . 


      You can tread on my thread whenever you like Phil. 

      Cheers guys

      Phil

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        User
        Posted: 22 May 2025 at 12:25

        Keep it up Phil. Wishing you all the best for  next week 👍. It’s not the smoothest journey is it… but I’m crossing everything that the cabazitaxel does the business for you.  

        Mike, Southend won through to the play off final at Wembley last night 🥳. So double celebration. Unfortunately I’m not well enough for that trip.

        I’ve seen Southend twice at Cardiff for play off finals and followed Canvey to Villa Park for the FA Trophy final, which they lost… 

        Cheers

        Phil

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          User
          Posted: 09 May 2025 at 09:08

          Hi Phil. You really are a trooper , not only having Cabazitaxel monthly but also having to travel down to London for it . 

          It’s good to hear you’ve got a good relationship with your consultant. That really helps. Sometimes you need a little outpouring of emotion or it all gets locked in. 

          Pleased to hear that so far the treatment is helping. Let’s hope that continues. 

          Take care, thinking of you 👍

          Phil

          Read conversation
            User
            Posted: 08 May 2025 at 17:05

            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.

             

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              User
              Posted: 06 May 2025 at 09:51

              Hi Dean.  I actually take my first Orgovyx today so no idea yet how I’ll be or if it’ll make any difference whatsoever. Certainly be easier than booking a monthly jab at the doctors. Worth a try though. 

              Hi Phil. It’s certainly a tough journey isn’t it! But I think we all seem to find a bit of hidden steel when this happens and just get on with life however we can. My heart goes out to you having to endure the Cabazitaxel sessions especially with the travelling as well. I do hope it will make a difference and best wishes to you and your missus. It’s a journey you both go on isn’t it. 
              Be thinking of you tomorrow mate. 

              Phil

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                User
                Posted: 29 Apr 2025 at 21:46

                Hi Tom, Thanks for the info about cabazitaxel.  It may well come to that.  I’ve been told that if you’ve had brachytherapy, you can’t have radiotherapy later.  Don’t know if that’s true.

                I was put on abiraterone which I believe is an alternative to enzalutamide.  My PSA reduced very quickly to 0.8 and stayed there for a couple of years but from last January it began to rise steeply. 

                I had so few side effects from the first two chemo cycles that I wondered if they were actually working.  I’ve been lucky in not having experienced the horrific side effects that some people get, including nausea, but it is cumulative so I’ve gradually found myself getting a bit more tired after each cycle and losing strength (discovered that when attempting to use the hedgecutter!).  3 days after the dose my taste buds are affected for about 5 days.  My main bugbear though, from the 3rd  onwards, has been oral thrush which makes my mouth and tongue very sore but the antifungals they prescribe work well.  After the 7th I felt really rough so my oncologist has reduced the dose to 80% for the last 3 and I felt much better after the 8th.  I’ve lost body hair, eyebrows and lashes but not all of head hair, although that and my sparse beard has gone wispy.  It’s actually started growing again already but apparently that can happen.

                How are you getting on with it so far?

                Harry 

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                  User
                  Posted: 29 Apr 2025 at 16:01

                  Hi Harry

                  I seem to be in much the same boat as you.

                  I was also diagnosed with PCa 15 years ago (Gleason 7 T3bN0M0) and treated with HT and radiotherapy. I had a biochemical recurrence in 2018 and restarted hormone therapy in May 2021 after my PSA reached 12 ng/ml. This was seen to be not effective enough by August 2023 when I started enzalutamide. By January of this year my PSA was rising steeply and I've now had 2 cycles of docetaxel out of 10 planned cycles.

                  I've been told that cabazitaxel is a chemo option after docetaxel has ceased working. There is some information about cabazitaxel on this website.

                  https://prostatecanceruk.org/prostate-information-and-support/treatments/chemotherapy

                  Tom

                  ps I am interested in how well you tolerated the chemo and what side effects you experienced.

                  Read conversation
                    User
                    Posted: 16 Apr 2025 at 08:20

                    Hi 

                    Defo worth it for me started docetaxel January 24 with 10 rounds,started cabazitaxel Feb 25 at 10 rounds booked in have my 3rd infusion tomorrow with MRI,Scsn and full body x-ray booked in for today Will update my profile and thread then.

                    All the best with your journey.

                    Read conversation
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