Search results for "radium 223"

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

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

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.

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

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 

So this morning my missus drove up the hospital to get a blood test form for my palliative nurse to use tomorrow morning. This one is to see if I’m ok for the radium next week or the week after. 

But my missus saw the lead CNS nurse who said she doesn’t think I’ll have any more radium as I have too many issues. Well that’s a blow . Although both my oncologist and his registrar are off at the moment and they will make the final decision. 

So feeling a bit deflated right now and wondering what’s next, if anything. Possibly nothing they can do now , just leave it to him upstairs. 

take care 

Phil

So just got up from my afternoon nap and the missus and my youngest have been on the phone to my oncology dept. 

Basically my youngest had told them he’s making a complaint. They phoned back in 10 minutes…! 

As my oncologist has been off they’d got the oncologist from Basildon to take over…

He decided my platelets were too low to have the Radium today. But no one bothered to tell me .. They’ve now said to get a blood test done and maybe i can get the Radium done next Tuesday. They said they’d email my missus a blood test form and we can print it off and my Palliative nurse can do it when she visits Thursday morning. Well guess what - no email…! 

So the missus is gonna drive up to the hospital first thing tomorrow before work and get a blood test form. 

Shouldn’t have to do all this. 

So we’ll see how this all goes now. 

Cheers

Phil

Hi guys. 

I looked up my PSA on my NHS App and it’s gone up to 138 now from 80. So definitely on the move. 

I also phoned my Nuclear Medicine dept yesterday and they didn’t have me booked in for today. I wish they’d let me know what’s going on. Also got hold of lead CNS nurse who said my oncologist is off at the moment. Not sure if it’s holiday or sick but surely someone steps up when he’s out.

My palliative nurse is coming Thursday but she’s said that as far as she can see the radium is working. So no idea why they postponed/cancelled it today.

Had my afternoon nap yesterday but my back was very painfull so I dosed up on cocodamol and slept from 3pm to 8am this morning. Think I’m gonna need to start taking the cocodamol regularly through the day now. 

Mark I’m so very jealous of your visit to the IoM . I’m sure you had an amazing time. Love the sound of the older bikes. Started going to Brands Hatch in ‘71 when I was 16 and that was a mixture of older British and Italian bikes and the new breed of Japanese Superbikes plus the works Harleys. It was the Racing success that got me onto a Suzuki GS1000 in ‘79 , plus the fact that my Ducati ‘dual’ seat was a little cramped for me and my new girlie. 🤣

Cheers everybody 

Enjoy every day you can  👍

Phil

Hi guys.

Thanks for all your kind thoughts. Much appreciated. 

I’ve not heard yet about the Radium but I got a text yesterday from the respiratory clinic asking if I still need an appointment. Hopefully I’ll get a date soon now. if I didn’t have the breathing issues I wouldn’t be feeling too bad. 

Castrol R , wow I can smell it now. Spent a lot of time at Rayleigh Rockets speedway as a kid and I remember the smell and the shingle hitting you as they went round the bends. Great memories. Plus the banger racing they did there as well and scrambling in Hadleigh Park , also nearby. 

Phil

So another little update. 

Had my Zolandronic Acid last Friday. Blood tests for that and the Radium on the Tuesday before at home by my palliative nurse. My GP then phoned me Thursday and said he’s referring me to Urology as there’s something in the bloods he didn’t like. Also said my PSA has gone up again. I didn’t have the balls to ask to what… 

On the same day my oncologist nurse phoned to say there’s something in my bloods that means they’re not happy to go ahead with the Radium next Tuesday. So she asked me get another test done. So went from Zolandronic Acid infusion to Oncology where they did a blood test. 

So just waiting on a phone call to tell me if the radium is on or off. They have to order it well early so I’ll know soon.  I know that any spread to soft tissue means the radium has to stop but hoping it’s not that. It will definitely feel like the end is drawing near …! 

Still having my naps and my breathing is not so good. Pretty annoyed I haven’t got my referral through yet for respiratory clinic since March.

Dont see my consultant till 18th September and kinda wish it was sooner. Usual waiting game. ! 

So take care peeps, keep doing whatever you can 👍

Phil