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Cabazatacil failed, now Radium 223 12 replies
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User
Posted: 13 Dec 2025 at 19:46
I understand. Sending my support and a hug. And I wish your husband all the best with the cabazitaxel, and, if needed, the Ra-223 and the new therapies coming through clinical trials.
Read conversation
    User
    Posted: 13 Dec 2025 at 17:56

    My hubby has aggressive, incurable G9 PC diagnosed in 2015.  Since last year the cancer has spread into lymph nodes and bones despite all the hormone therapy and 10 cycles of Docetaxel only had a minimal effect on it.  His PSA, which had reduced from 95 to 6.4, started rising again as soon as it finished.   He’s just had his 2nd cycle of Cabazitaxel (apparently known as a ‘last resort’ chemo) and we’ve yet to find out whether it’s started working.  Possibly some RA-223 after that.

    From the posts by others in much the same situation, it looks very much as though the options are running out and suddenly it feels like the end of the road is approaching.  We’re trying to be philosophical (after all, he’s lasted longer than many men) and are playing it down to friends and acquaintances.

    Unlike me, my hubby has always rejected forums, support groups, counselling, research etc so has  always been a bit in the dark about the various treatments he’s been on.  I haven’t told him about the above-mentioned posts, but even he has the feeling that time is running out at last going by some of his recent remarks.

    His way of forgetting about it is to immerse himself in his voluntary work while I find Buddhist mindfulness meditation helpful but it always feels as if there’s a dark cloud overhead these days and times when I start worrying about getting end of life care (after my friend’s awful experience); also dreading being without him after having been together for 57 years.  All we can do now is make the most of our time together.

    Sorry – just needed to vent!

     

    Read conversation
      User
      Posted: 16 Nov 2025 at 17:11

      Hi Phil,

      Thanks for your reply.

      I’ve read other people’s comments that they didn’t feel so bad on Cabazitaxel.  Peter’s worst ones last time were the oral thrush and strange taste.

      I’m sorry it wasn’t as successful for you as hoped.  Although Peter had all 10 Docetaxel cycles his PSA only dropped to 6.4 from 95 and started rising again as soon as he’d finished the Docetaxel despite the Zoladex and steroids.  The last BT in September showed 27 but it’s probably shot up again since then. The PC was back in the  lymph nodes, bone mets too now in femur, rib and clavicle although he’s not in pain at present.

      Beginning to wonder how many options are left.  Radium 223 has been vaguely mentioned.   Meanwhile he starts the Cabazitaxel next week.

      Wishing you well on your own journey.

      Hazel

       

      Read conversation
        User
        Posted: 12 Nov 2025 at 13:39

        Hi another update

        husband been to see the oncologist today for results of recent scans unfortunately there is further spread especially across his shoulder and collarbone and some more in his rib cage, he is starting Radium 223 his first dose is on Wednesday the 3rd of December then every month for 6 months.  
        hope all is well 

        Ann 

        Read conversation
          User
          Posted: 06 Nov 2025 at 13:08
          Hi Linda, My OH was put on Radium (Ra-223) when Abiraterone didn't work. Ra-223 is usually well tolerated through 6 x 4 week injections and this has been the only treatment that we can't see any side effects. He has had two injections so far and we meet with the oncologist in between the injections. My profile shows the full journey. He had a PSMA PET scan before being offered Radium. His most recent PSA was 61.

          Good luck

          Read conversation
            User
            Posted: 30 Oct 2025 at 22:23

            Hi Everyone,

             

            I thought it would be strange to post from my Dad's account, so I made my own.

             

            I am Edward, Philip's youngest son. I was alongside him on Monday 6th October with my Mum and wife when he sadly passed away very peacefully around 6PM.

             

            Posting on here had been on our list of things to do, but we just didn't have the time alongside sorting out everything that unfortunately comes after a death.

             

            We were sat in the solicitors waiting room earlier this week and I decided to check the forum and was really thankful to see that Adrian was able to provide the update around a week later instead of us leaving you all in the dark up until now.

            We are overwhelmed with the lovely messages on here and are incredibly thankful that this forum exists. This forum was a big part of his life, more than we realised. Being on here since his death and reading new as well as past messages has really helped us grieve. We were there for him the whole way but knowing he also had the support from everyone on here as well and to see him provide support back really has filled us with so much love.

             

            I would like to share more about my Dad's last few weeks. I know it's not a nice thing to write or read, but even though this forum is about supporting each other, it is about sharing your knowledge from your experiences because not everyone's journey is the same.

             

            Dad had been in the hospital for around 2 weeks by the time he passed. He was admitted for pain in his side, which after some scans they found the cancer had spread to his liver this was only 2 weeks after finding out it had also spread to his lungs.

             

            At this point he had been off Radium 223 for around 5 weeks because he was getting too bad side effects from it - During most of the radium treatment he was incredibly tired and worn out, sleeping most of the day and probably awake for around 4-5 hours a day - The worst side effect by the time he stopped it was his bone marrow was barely working, even one doctor classing it as "failed" when he was in the hospital mid-September. In this failed state it was not producing enough haemoglobin and platelets and in the last 4 weeks prior he had 3 or 4 blood infusions which spiked the values, but they would just slowly fall again. I am not saying Radium 223 is bad in this case, this is just the experience my Dad had with it and at the time for him it was the best treatment to fight the cancer that had spread to his bones. He could not complete the full course, so we don’t know a lot about whether it worked, I do recall at one point that a bone scan did show it hadn't spread much more, but it's hard to remember all the results at this point. During the last few days the blood tests did show that his haemoglobin had stabilized at an acceptable value, so his bone marrow was recovering slowly.

             

            Unfortunately, the ward he was on had a case of COVID, which he caught. It was a recipe for disaster, and he couldn't fight the cancer, the weakness related to the bone marrow as well as COVID. We are very thankful that the hospital team helped us manage his pain and comfort at the end and he really did pass away so very peacefully, no longer having to put up with all the pain, tests and treatment.

             

            We have asked close family and friends that if they wish to do something in memory of Dad that it would be lovely if they could donate to Prostate Cancer UK. I'm happy to say that we have raised nearly £1,000 and it's still going up.

             

            Again, thank you so much for all your messages on here and support you provided to my Dad. We are so very grateful for the support you gave him, and we don’t think he would’ve been in such high spirits if it wasn’t for this forum.

             

            From our family to yours, we wish every single one of you nothing but the absolute best in your journeys. We hope that you have many many many years full of love and joy with your families.

             

            Please message me if you want to talk or even ask any questions.

             

            Thanks,

            Ed

            Edited: by member 30 Oct 2025 at 22:33  | Reason: Not specified

            Read conversation
              User
              Posted: 14 Oct 2025 at 18:44
              Best of luck Phil, Lutetium-177 works well for most men and I really hope it does for you.

              We've been incredibly unlucky with my father - his PSA has gone up from 28 to 70 in the past month, the Lutetium looks like it has done nothing. His ALP has also gone up from 150 in August to 1400 (!) now, so his disease looks to be unusually aggressive. This *can* be a flare, but the extent of the increases looks more like very aggressive disease. He is in a lot more pain and having a lot more nausea too. We don't know if the second Lutetium-177 will take place at all.

              Appointment with the private consultant earlier for the Lutetium treatment - he is having NHS radiotherapy on his upper and lower spine tomorrow to get on top of his pain as it looks likely that nerves in his lower spine are causing his severe leg pain. If he improves, they will do the second Lutetium, but a bit later, at the end of the month instead of the 16th October as originally planned.

              In the meantime, we're looking into the Actinium-225 trial that is being run at the Royal Marsden and also at UCL. Actinium is meant to be more potent than Lutetium and it seems to often work even in patients like my Dad, but we'll see if he even gets accepted onto it. The only other option after this is Radium-223 but at this stage that's going to be more about symptom relief than disease treatment - but that still matters.

              A difficult situation, no doubt. He's been incredibly unlucky. But he's not giving up, he still wants to give himself every chance and we're determined to exhaust all the possible options.

              All the best

              Read conversation
                User
                Posted: 13 Sep 2025 at 13:56

                Hi all, an update on this. It's now been over 2 years since diagnosis and his disease is certainly aggressive. We did agree to move forward with Cabazitaxel before considering Lutetium-177; on balance this just made more sense in terms of sequencing.

                The Cabazitaxel only briefly worked though (see below) for the first few cycles, and then PSA started rising very rapidly, and his quality of life has declined - so we had to abandon it. His scans have been showing progression, so we moved swiftly to Lutetium-177 privately, at obviously enormous expense - but fortunately my parents can cover the cost and it's certainly worth a shot, as some people seem to get very good outcomes with it, and most people see at least some improvement on this treatment. Still have Radium-223 and possibly Actinium-225 in our back pocket from here (there seems to be a trial in the UK for this at the moment; there's also the option of going to Germany or elsewhere privately for this), but obviously we're really hoping the Lutetium-177 gives good results. Even if it does, we know it won't be forever - but naturally we're all quite anxious to see things move in a positive direction.

                Ultimately there's nothing more we can do for now - just need to see how things go. Here's a chronological update on the last 6 months or so (also on profile):

                29 April 2025: Cabazitaxel begins, PSA 10.

                Early June 2025: PSA down to 6.

                22 July 2025: 5th Cabazitaxel session, but next PSA showed a rise up to 18, with the MRI scan showing progression - so future Cabazitaxel cycles stopped.

                2 September 2025: first infusion of Zoledronic Acid to support his bones. He will have one of these infusions every 4 weeks moving forward. Quite nasty side effects with bad flu-like symptoms, could barely get up for the next few days. Side effects should be much less in future infusions.

                4 September 2025: First Lutetium-177 treatment (private). Having two treatments for the first time in the same week was probably not the best idea, he was very worn down for a week after this, but started to bounce back slowly. Fingers crossed that the Lutetium is effective for him.

                Read conversation
                  User
                  Posted: 08 Sep 2025 at 20:54

                  Hi guys.

                  Very quick update. Just had a visit from one of my registrars . 8pm , just as the wife and son and DiL were leaving. 
                  Turns out I have a shadow on one lung now and my lymph nodes are burning brighter. 
                  Haemoglobin probably needs another boost and platelets still low but could be ok soon. 


                  They’d like to do some more chemo but need me to be stronger. No more Radium though. So I’ve really got to try to eat and drink more/better. 

                  So not what I wanted to hear but just have roll with it. Not sure how long I’ll have left now…! Bit tearful at the moment but can’t be like that . 


                  Was hard as my wife had to leave straight away. So, so hard on her and the family. 

                  So guys, enjoy every day 👍

                   

                  Take care 

                  Phil

                  Read conversation
                    User
                    Posted: 04 Sep 2025 at 10:19

                    Palliative nurse here this morning. She dressed my arm where I ripped it open yesterday on the stairs when I had a bit of a breathing issue at the top. Respiratory clinic phoned today funnily enough and said it’s still gonna be a couple of months. So making a GP appointment so I can explain how it’s got worse. 

                    The nurse is updating my painkillers for my back and adding morphine to take when I need. 

                    just gotta wait for my oncologist to decide on the radium now. 

                    Southend hospital always been good up to now with appointments etc. Hopefully it’ll all get back on track . 

                    Phil 

                    Read conversation
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