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Radium 223 side effects

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User

Posted 11 Jul 2025 at 12:53

Greetings, I would really appreciate the experience of anyone who has or is taking radium 223.

I have Gleeson 9 , all hormones have failed to contain the the cancer. The cancer is in the bones ( legs, arms , spine ). I am on monthly infusions of zolderonic acid , the side effects of the first infusion were ok in the great scale of things and hopefully the second will easier.

I have declined chemo (much to the docs dismay) as this will definately not cure me ,will take about 4 months and will not etend my life greatly.

The doc wants me to have monthly infusions of Radium 223. The leaflet I have minimises the side effects . I would really appreciate the experience of anyone who has or is taking this. I have been given a year and do not want to spend it feeling crap from side effects.

I am 70 and reconciled to my fate .

User

Posted 13 Jul 2025 at 14:55

My husband had a diagnosis of Gleason 9 Tb3 10 years ago, he had HDR Brachytherapy followed by radiotherapy and three years of Prostap. His cancer spread to his lymph nodes two years after he came off the Prostap. He then looked at alternative treatments and went back on the Prostap again and continues to do so.
He now has a programme of supplements and alternative metabolic treatments along with the hormone treatments. His current PSA is < 0.1 and he has an excellent quality of life, he is now 75, active and enjoying life. David was clear he didn’t want to give in easily, and was clear QOL was important to him. Maybe he’s lucky, but I’ve read excellent results hence, his dedication to this programme.
I hope this helps.

Leila

User

Posted 13 Jul 2025 at 15:09

Thanks for your post.
I hope I can stick to my decision. The side effects can vary a lot but they were never the main issue. My wife has lost a couple of friends to cancer and witnessed their response to chemo which has prejudiced her against the procedure. My wife is coping superficially ,this is mainly due to the fact that we do not discuss the issue too much. We have had frank discussions about the decision not to have chemo focusing on the consequences of refusal.
Unfortunately she is now on blood pressure medication.
Good luck with your treatment.

User

Posted 16 Jul 2025 at 08:11

Hi Prestonuk. Following a PSMA PET CT scan a couple of weeks ago, my OH was offered Ra-223 just yesterday. He had the option of more radiotherapy to the spine mets or Ra-223 and talking it through it seemed more efficient to take Rsa-223 as it should get to all micro mets we maybe haven't found yet. He was diagnosed Mar 2023 G9 T3b N1 M1 and PSA 264. He rapidly became castrate resistant and was primary resistant to Abiraterone. he has also refused to have any Chemotherapy at nearly 80, he is more keen on quality of life. I support all his decisions and we talke about it all a lot. I have found this from PCRI on Ra-223 to be helpful. https://www.youtube.com/watch?v=1_XpWLYMq4A

Good luck to everyone

Edited by member 16 Jul 2025 at 08:13 | Reason: Not specified

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User

Posted 12 Jul 2025 at 07:29

Hello.

My heart goes out to you, mate.

I don't think there are many on here that have experience of Radium 223 treatment, but I've found a previous conversation started by Stew the Blog who was on it. Apparently Stew passed away recently.

https://community.prostatecanceruk.org/posts/t30393-223Radium-treatment

Edited by member 12 Jul 2025 at 07:33 | Reason: Add link

User

Posted 12 Jul 2025 at 09:35

Thanks , That does not sound too good. The info from cancer uk suggests mild nausea and runs. I suspect the doc likes to do something. The bone scans show the cancer throughout the skeleton.
The doc has given me a year. This is the first timeline I have had. I suspect the year involves quite a bit of pain as the bones compress on the nervous system.
I do not intend to linger so a monthly dose of the radium does not look too good.I will continue my research.

User

Posted 12 Jul 2025 at 19:30

Why Decline chemo?

I have had docetaxel (10 cycles) and am currently on cabizitaxel (7th cycle) i no it wont cure me but its to date given me 2 years,

I'd certainly consider chemo

Regards Phil

User

Posted 13 Jul 2025 at 11:05

I have had 5 years since diagnosis and now in my 4th year since RP. My cancer is aggressive, the doc was dismayed ay the effect of enza.
My reasoning is that chemo would take a minimum of 6 rounds. I have read that the later rounds can be 'brutal' as the docetaxel is cumulative (is this correct ?)
I put it to the doc that after chemo I might have 18 months to 2 years before I find myself in exactly the same place as now. The doc did not disagree, in fact the doc indicated it could be less. The doc said that my PSA would start rising again as soon as I stopped chemo.
It sounds ungrateful but I have had enough of hospital visits, waiting for scans and blood tests which will lead inevitably to the same conclusion.
I have always had an active life rock climbing and cycle touring , I now lack the energy for both. Gardening and easy walks do not appeal
There are two of us in this . My wife has an active life in choirs , 'crafting' and charity shops and her life is being blighted by the cancer . Another 2 years of watching the PSA go up , constant hospital visits ..... would continue the emotional stress she is under.
I would far rather release her from this.
We are both 70 , the children are grown up.
The doc is disappointed in my decision . If she had said another 5 years , relatively treatment free I would consider it.
Thanks for your reply. All the best with your treatment.

User

Posted 13 Jul 2025 at 13:04

I guess you’re bravely making a decision all of us with aPC will need to make one day. A very frank post and I wish there was an easy answer. If it assists, and what I’ve appreciated the past 12 months, and having gone through 6 rounds of Docetaxel, is that being fit really helped. As a fellow cycle tourist I hope you wouldn’t find it too bad? It was cumulative but the side affects were negligible. Good luck whatever decision you take and thinking of you.

User

Posted 13 Jul 2025 at 14:55

Leila

User

Posted 13 Jul 2025 at 15:09

User

Posted 15 Jul 2025 at 12:02

Hi, Has anyone said that Chemo for prostate cancer is less arduous than for other cancers. My impression is that seeing others on Chemo isn't a good guide for what may happen to you. A YouTube doctor says it's better to try options and then back out if you don't like them.

Also things change and I've always thought I'd hang on for the possibility if it happened to me.

I'm likely with the same Oncology dept as you but am on telephone appointments. Good luck.

User

Posted 16 Jul 2025 at 08:11

Good luck to everyone

Edited by member 16 Jul 2025 at 08:13 | Reason: Not specified

User

Posted 06 Aug 2025 at 11:39

Hi Prestonuk.

I am also 70 like yourself. I just had my 4th Radium 223 yesterday. I am not sure about side effects as i changed my Hormone therapy at the same time. From Degarelix injections to Relugolix pills as the injections gave me an infection in my stomach every time and i ended up in A&E.

According to my Onco the bloods are showing the Radium is helping with the bone mets. My bone mets are wide spread from my knees to my skull. Unfortunately my PSA is still rising and last time it went up to 80 from 50 so not so pleased about that although my Onco says dont worry …! I take a couple of cocodamol at night as i get a bit of lower back ache and that normally does the trick. I am also having to have a nap every day now . Don’t know if it’s the Radium or the Relugolix.

I had chemo Docetaxel last year but i couldn’t continue after 7 sessions as I became too ill. I had terrible chemo mouth which is still affecting me now and i am just about to write a new thread to see if anyone can help.

Onco has upped my steroids slightly with the intention of helping my appetite and possibly my taste/smell issues. Just have to put up with the Moon face and fat belly as i got last time…!

Not sure if I’ve helped at all. Please ask any questions you like.

Cheers

Good luck

Phil

User

Posted 06 Aug 2025 at 14:01

Hi Preston UK,

Have you been tested for the BRCA gene? When my husband stopped responding to Abiraterone, he was tested for this and was shown he had it.
This meant he could access Olaparib, an immunotherapy, which had minimal side effects and worked well for around 8 months.

By the way are you in Preston? I am.

Good luck.
X

Mrs MAS

User

Posted 20 Aug 2025 at 12:21

Apologies for my late response. We were away for a while. Thanks to all for your responses.

At the moment I'm on various pills and zolderonic acid infusionswith some side effects. I was reluctant to take another infusion when I'm not in any real pain ( apart from aches and tiredness).

I am still against taking the chemo path. I feel quite well at the moment.

The doc has given me 2 years. I am very pleased with the treatment I have received from oncology, I could not have asked for more.

Chemo was just kicking the can down the road. I think watching someone die must be a lot worse than dying. Another 2 years would have extended the distress .

Good luck to all.

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