I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Radium 223 - use and side effects

Email this conversation Print this conversation
User
Posted 27 Oct 2022 at 19:31



I've made it through 9 cycles of Cabazitaxel, but the cycle 10 got cancelled - the nurse thought I'd had enough, and the last cycle might do more harm than good.  Whilst I feel I've done well not really suffering from any of the side effects, there has been increasing tiredness and lack of energy (although my hikes along short sections of the Oregon Coastal Trail two weeks ago show that I can still do stuff, if only for short periods when I've built myself up for the challenge).


 


PSA hit a low point of 84.6 on 5 September (down from 2314 at the end of May).  I'd hoped to get down to single digits, but what can you do?  PSA rising steadily: 143 by 26 September, and 238 on 19 Oct.  Back of a fag packet calculation suggests a doubling time of about 6 weeks.  Been here before, so no longer bothered about it - what would be the point.  Doctor inadvertantly referred to Cabazitaxel as a "last resort".  Well now that's gone I'm wondering what happens now...  PSA continues to rise exponentially - will be interesting to see how high it goes. 


 


Radium 223 has been mentioned, but not a certainty.  Would appreciate any info on this - at what point is it offered, how it works / what it does, and potential side effects.  Thanks for any info/advice.




User
Posted 29 Oct 2022 at 14:05
Really helpful, thank you. You won't be offered abiraterone or apalutimide because you have had enzalutimide - all the research shows that once enza fails, the other two won't work. But I can't see why cabazitaxel should be last chance saloon - you might still get some benefit from radium 223, you can ask to be referred for a PSMA scan to see whether you would be suitable for Lutetium 177 and there is still the option of trying stilboestrol. Stilboestrol is considered an old-fashioned treatment now but works quite differently to Prostap, decapeptyl, etc and some men do very well on it. Don't let your onco say there are no more options without explaining to you why none of the above are worth trying.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Oct 2022 at 19:31



I've made it through 9 cycles of Cabazitaxel, but the cycle 10 got cancelled - the nurse thought I'd had enough, and the last cycle might do more harm than good.  Whilst I feel I've done well not really suffering from any of the side effects, there has been increasing tiredness and lack of energy (although my hikes along short sections of the Oregon Coastal Trail two weeks ago show that I can still do stuff, if only for short periods when I've built myself up for the challenge).


 


PSA hit a low point of 84.6 on 5 September (down from 2314 at the end of May).  I'd hoped to get down to single digits, but what can you do?  PSA rising steadily: 143 by 26 September, and 238 on 19 Oct.  Back of a fag packet calculation suggests a doubling time of about 6 weeks.  Been here before, so no longer bothered about it - what would be the point.  Doctor inadvertantly referred to Cabazitaxel as a "last resort".  Well now that's gone I'm wondering what happens now...  PSA continues to rise exponentially - will be interesting to see how high it goes. 


 


Radium 223 has been mentioned, but not a certainty.  Would appreciate any info on this - at what point is it offered, how it works / what it does, and potential side effects.  Thanks for any info/advice.




Show Most Thanked Posts
User
Posted 27 Oct 2022 at 22:52
Radium 223 doesn't really treat the cancer systemically - it treats bone mets with the aim of reducing bone pain and increasing bone stability. Unfortunately, it makes bone pain worse rather than better for some patients. It does seem to treat the cancer at source sometimes but that's a sort of bonus effect. Certainly worth trying if it is offered.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Oct 2022 at 23:01
Another thought - your bio is not complete so all I can deduce from your last 10 posts is that you had decapeptyl, docetaxel and now cabazitaxel? Have you had enzalutimide, abiraterone or apalutimide? Have you had bicalutimide added and then removed? Have you tried Stilboestrol?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Oct 2022 at 11:09
Hi Lyn. I've updated my profile to show a summary of the treatments I've had to date. I see many other meds discussed here, but I haven't been offered any of them - possibly because my caner is advanced?
User
Posted 29 Oct 2022 at 14:05
Really helpful, thank you. You won't be offered abiraterone or apalutimide because you have had enzalutimide - all the research shows that once enza fails, the other two won't work. But I can't see why cabazitaxel should be last chance saloon - you might still get some benefit from radium 223, you can ask to be referred for a PSMA scan to see whether you would be suitable for Lutetium 177 and there is still the option of trying stilboestrol. Stilboestrol is considered an old-fashioned treatment now but works quite differently to Prostap, decapeptyl, etc and some men do very well on it. Don't let your onco say there are no more options without explaining to you why none of the above are worth trying.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Oct 2022 at 09:21
Thanks Lyn. I'll be seeing the oncologist mid-December and I'll bring up the Stilboestrol. Judging by my PSA scores the Prostap stopped doing much a while back, so no reason not to dump it in favour of something else? I've brought up the Lutetium 177 before and told I could only access it privately at the moment. Wondering if this might change in the near future. Or maybe I should get a Scottish post code...
User
Posted 12 Dec 2022 at 21:16
Had meeting with Oncologist today - the news could have been better. PSA up to 820 (was expecting somewhere between 400-500) and advise that I've pretty much reached the end of the line in terms of treatment. Radium 223 not an option now, or in the future. Only chance of more meds is clinical trials - Lutetium 177 was mentioned, but currently only available privately in the UK (about £4000 per shot). Vague possibility that it may become available on the NHS in the not too distant future. So I need to last that long. Oncologist pointed out that I'm realitively young for this kind of cancer, and otherwise in good health, so that's my best hope for the time being. Scans planned for near future (my travel plans for hoofing it to Latin America delaying that by a few weeks, but no regrets there). So I guess now it's "wait and see".

The specialist nurse talked to me afterwards and said that PSA is a bit like smoke from a fire. Some fires burn furiously, but produce little smoke, others smoulder away with little flame but loads of smoke. Some cancers are extremely aggressive, but produce little PSA, others are less aggressive but produce huge amounts of PSA. Hope I fall into the second category.

I can't wait to fly out at the weekend - the weather out there looks like a nuclear winter, and it feels like one too... If ever I needed some blue sky and sunshine it's now... u-r-g-h-h-h
User
Posted 15 May 2023 at 12:42

After going through your detailed history, the treatment options left with you are rechallenge chemotherapy, immunotherapy, and radionuclide therapies (Lu-177; Ac-225 & Ra-223). Most of the chemotherapies are associated with significant side-effects. 


Check my profile for more info on Lutetium Therapy
 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK