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223Radium treatment

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User
Posted 17 Mar 2024 at 17:59

Has anyone any experience of 223Radium injections when the PCa has spread into the bones?

I had my first of 6 injections just over a fortnight ago, and for the first 14 days I was in absolute agony, pumping 30/500 co-codamol like it was going out of fashion.  Suddenly, on day 14, the excruciating pain stopped, and I've just got back and shoulder ache now.

Will I get this two weeks' worth of "pain flare" with every cycle of treatment, or will it reduce in intensity as the radium takes effect?

User
Posted 17 Mar 2024 at 17:59

Has anyone any experience of 223Radium injections when the PCa has spread into the bones?

I had my first of 6 injections just over a fortnight ago, and for the first 14 days I was in absolute agony, pumping 30/500 co-codamol like it was going out of fashion.  Suddenly, on day 14, the excruciating pain stopped, and I've just got back and shoulder ache now.

Will I get this two weeks' worth of "pain flare" with every cycle of treatment, or will it reduce in intensity as the radium takes effect?

User
Posted 18 Mar 2024 at 20:43
For some men, the bone pain gets worse with each infusion - we have had a few members who abandoned R223 after 2 or 3 cycles. Fingers crossed that won't be the case for you
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Mar 2024 at 13:34

I don't know the answer to the question. Radium 223 does cause some swelling at the active sites. I know one of the checks they do beforehand is to check that any swelling isn't at risk of compressing spinal cord in which case they won't do this treatment. I don't know if if the swelling is responsible for the pain, but I guess it might be. Was the pain at the location of known mets?

I hope it's better next time, and best wishes for a good outcome Stew.

 

User
Posted 20 Mar 2024 at 13:22

Hi Andy, thanks for the kind thoughts.

Yes, the pain was very much following the pattern of damaged bone that I saw on the bone scan. 

It was odd how sometimes it would come on very quickly in one location, then reduce just as quickly at seemingly random rates.  For example on day two I was having breakfast and then suddenly it felt as if someone had hit me on the back of the head with a stick.  Two days later, the location was just a tender ache.

User
Posted 26 Mar 2024 at 14:55
Just for info - my first experience of 223Radium is up on my blog now. On to cycle two on Thursday.

https://stewart124.wordpress.com/just-cancer-35-223radium-part-one/

User
Posted 30 Mar 2024 at 11:24
Not sure that they are all that interested in my PSA any more. The bone mets are priority now.

The actual R223 infusion is just an injection through a cannula along with a saline flush; just a couple of syringes-full. Sorting the cannula on and off takes most of the time. The technician was very chatty so the whole thing took about half an hour.

I drove there and back no problem.

So far (!) the pain flare isn't as bad as first time round. (silly thing to say... kiss of death there)

User
Posted 30 Mar 2024 at 15:59
Hi Stew,

Glad to hear the pain is ok (at the moment)

Once again thanks for answering my questions.

Kim

User
Posted 01 Jul 2024 at 06:49

Originally Posted by: Online Community Member

My husband now has had 4th treatment of R223, experienced side effects on 2nd treatment feeling very unwell and back ache had a break because heavy cold, 3rd treatment side effects not too bad, ALP reduced to 72, PSA 26, had 4th treatment 18th April been unwell since, particularly fatigue and pain to buttocks and hip, loss of appetite.

Had an Pelvic X Ray just got results more activity in original hip met, no fracture.

Had CT after 3rd treatment after much pressing, wanted to know results to avoid having further treatment if not effective.  Got verbal result from Radiotherapist on Thursday shows progression in high coccyx, said MDT decided not to continue with R223 treatment. We had this treatment at New Cross Hospital Wolverhampton,  told that they had sent CT results to our local Oncologist in Shrewsbury.

What way forward now, at rest in bed no pain, having bone pain in buttocks and hip when mobile, mobility really deteriorated since starting treatment, mobility with stick, pain & difficulty in sitting down on the toilet. GP advises to encourage mobility because of muscle waste. Taking just paracetamol and codeine but constipation from codeine and because has Proctitis constipation gives bleeding more than usual. 

Would welcome any advice that the community can give, many thanks in advance, really stressed.

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User
Posted 18 Mar 2024 at 20:43
For some men, the bone pain gets worse with each infusion - we have had a few members who abandoned R223 after 2 or 3 cycles. Fingers crossed that won't be the case for you
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Mar 2024 at 13:34

I don't know the answer to the question. Radium 223 does cause some swelling at the active sites. I know one of the checks they do beforehand is to check that any swelling isn't at risk of compressing spinal cord in which case they won't do this treatment. I don't know if if the swelling is responsible for the pain, but I guess it might be. Was the pain at the location of known mets?

I hope it's better next time, and best wishes for a good outcome Stew.

 

User
Posted 20 Mar 2024 at 13:22

Hi Andy, thanks for the kind thoughts.

Yes, the pain was very much following the pattern of damaged bone that I saw on the bone scan. 

It was odd how sometimes it would come on very quickly in one location, then reduce just as quickly at seemingly random rates.  For example on day two I was having breakfast and then suddenly it felt as if someone had hit me on the back of the head with a stick.  Two days later, the location was just a tender ache.

User
Posted 26 Mar 2024 at 14:55
Just for info - my first experience of 223Radium is up on my blog now. On to cycle two on Thursday.

https://stewart124.wordpress.com/just-cancer-35-223radium-part-one/

User
Posted 27 Mar 2024 at 21:36
Hi Stew, reading your blog on Radium 223 as my Husband has just been offered this. His PSA is 45 at the moment, only bone mets involved. Just curious has your OC told you that the Radium will not affect your PSA levels? How is the pain at the moment, did it wear off, and how long did it take to wear off ? Grateful for any info we can glean from you'

Hope it works well, good luck for tomorrow

Kim

User
Posted 27 Mar 2024 at 22:57
Hi Kim

They are including my PSA in the blood tests ahead of the infusions, but my Oncologist doesn't seem to be too concerned about my PSA at the moment, as it spiralled out of control under enzalutamide. ????

As far as I can work it out from all the info, the radium isn't effective on soft tissue, so I don't expect it to touch my prostate itself. Prostap is hopefully continuing to be effective every 12 weeks?

The radium is designed to enter the bone marrow and at short range it will attack the damaged bone cells, but leave the healthy ones alone. It is next to calcium on the Periodic Table, so it can promote bone regrowth as well, rather like bisphosphonates.

Second infusion tomorrow, can't say I'm looking forward to it. The "pain flash" lasted almost exactly a fortnight and disappeared during a morning; I still have some pain in my shoulders and back, but I guess that might just be the cancer.

User
Posted 28 Mar 2024 at 14:09
Hi Stew,

Thanks for the info. Our OC told us not to 'rush in to this treatment' whatever that means. I was telling my Husband about you starting this treatment, and your PSA before starting it, so we well may 'hold on ' a while longer. But will be reading your updates with interest.

Hope you went on ok today

Kim

User
Posted 29 Mar 2024 at 15:44
Hi again Kim

PSA when I started the radium was 98.

The technician yesterday said that the pain flashes can be quite erratic, but theoretically they should diminish as you approach the last infusion.

Good luck with the treatment plan!

User
Posted 29 Mar 2024 at 20:49
Hi Stew

Thanks for your reply' and info.

Did they say if tour PSA is likely to go down ?

How long does it take to administer the R223 ? Are you able to function (ie drive) after the infusion?

Hope the treatment works well for you, please keep us informed if you don;t mind

All info will help us in our plan.

Thanks again

Kim

User
Posted 30 Mar 2024 at 11:24
Not sure that they are all that interested in my PSA any more. The bone mets are priority now.

The actual R223 infusion is just an injection through a cannula along with a saline flush; just a couple of syringes-full. Sorting the cannula on and off takes most of the time. The technician was very chatty so the whole thing took about half an hour.

I drove there and back no problem.

So far (!) the pain flare isn't as bad as first time round. (silly thing to say... kiss of death there)

User
Posted 30 Mar 2024 at 15:59
Hi Stew,

Glad to hear the pain is ok (at the moment)

Once again thanks for answering my questions.

Kim

User
Posted 20 May 2024 at 11:26

My husband now has had 4th treatment of R223, experienced side effects on 2nd treatment feeling very unwell and back ache had a break because heavy cold, 3rd treatment side effects not too bad, ALP reduced to 72, PSA 26, had 4th treatment 18th April been unwell since, particularly fatigue and pain to buttocks and hip, loss of appetite.

Had an Pelvic X Ray just got results more activity in original hip met, no fracture.

Had CT after 3rd treatment after much pressing, wanted to know results to avoid having further treatment if not effective.  Got verbal result from Radiotherapist on Thursday shows progression in high coccyx, said MDT decided not to continue with R223 treatment. We had this treatment at New Cross Hospital Wolverhampton,  told that they had sent CT results to our local Oncologist in Shrewsbury.

What way forward now, at rest in bed no pain, having bone pain in buttocks and hip when mobile, mobility really deteriorated since starting treatment, mobility with stick, pain & difficulty in sitting down on the toilet. GP advises to encourage mobility because of muscle waste. Taking just paracetamol and codeine but constipation from codeine and because has Proctitis constipation gives bleeding more than usual. 

Would welcome any advice that the community can give, many thanks in advance, really stressed.

User
Posted 01 Jul 2024 at 06:49

Originally Posted by: Online Community Member

My husband now has had 4th treatment of R223, experienced side effects on 2nd treatment feeling very unwell and back ache had a break because heavy cold, 3rd treatment side effects not too bad, ALP reduced to 72, PSA 26, had 4th treatment 18th April been unwell since, particularly fatigue and pain to buttocks and hip, loss of appetite.

Had an Pelvic X Ray just got results more activity in original hip met, no fracture.

Had CT after 3rd treatment after much pressing, wanted to know results to avoid having further treatment if not effective.  Got verbal result from Radiotherapist on Thursday shows progression in high coccyx, said MDT decided not to continue with R223 treatment. We had this treatment at New Cross Hospital Wolverhampton,  told that they had sent CT results to our local Oncologist in Shrewsbury.

What way forward now, at rest in bed no pain, having bone pain in buttocks and hip when mobile, mobility really deteriorated since starting treatment, mobility with stick, pain & difficulty in sitting down on the toilet. GP advises to encourage mobility because of muscle waste. Taking just paracetamol and codeine but constipation from codeine and because has Proctitis constipation gives bleeding more than usual. 

Would welcome any advice that the community can give, many thanks in advance, really stressed.

User
Posted 01 Jul 2024 at 09:06

Hi

I'm sorry but I'm unable to give any advise about your husband's recent treatment,my journey is not yet got to the treatment stage that your husband has undertaken,but I do send all my best and hope that he turns the corner and everything begins to settle down with aches and pains he is experiencing.

Regards Phil 

 
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