Radium 223 side effects

You question is a carbon copy of my thoughts right now. I also have bone Mets only and didn’t enjoy a successful chemo (Carboplatin).

My thoughts about Radium are that it’s possibly not going to make a lot of difference and will make me feel the side effects without much gain.

I would also like to know first hand how people have got on with it. There’s not much talk about it, but I don’t know why?

So has anyone anything to say about Radium and their experiences of it?

Hello Tillerbuff 

Welcome to the Macmillan online Community, although I am so sorry to find you joining us.

I did a quick search of the community to see if there are any threads/posts that answer your question and I didn't find any. That does not mean we don't have Community members with the experience, perhaps they haven't posted anything.

From the information I have to hand here's a few links that may answer your question;

Radium-223. Cancer Research UK.

Radium 223 - Gloucestershire Hospitals NHS Trust.

Radium 223 - Prostate Cancer UK.

I hope the above help you with your choices. Please do let us know how you get on.

Best wishes - Brian.

Hi Tillerbuff, 

I was interested to read your post as my husband is in a very similar position to you except that he’s currently on Cabazitaxel chemo, which so far has had less effect than the Docetaxel. His consultant has suggested Ra-223 after he finishes the chemo. 

We’d also tried searching for any posts describing people’s experience of this and got nowhere on any of the community forums but I’ve now Googled ‘RA-223 and increased BP’ and the AI summary lists it as a ‘potential but less common side effect as reported by Drugs.com and Mayo Clinic’, and that regular BP monitoring is recommended.  (It also mentions ‘patients on the Macmillan Community have noted hypertension as a potential issue during treatment cycles’.  When I clicked on the Macmillan link it gave, it just took me to your post!  Patients plural?) 

We’re rather worried as my husband has suffered from hypertension recently and his doctor is currently in the process of attempting to reduce it, having now prescribed extra medication.  It's apparently a side effect of Zoladex, which is what he’s currently on. 

The other worrying fact is that RA-223 appears to be the final option for him - unless he can afford a new drug currently not available on the NHS as a course costs around £80,000, and is still not guaranteed to be effective even then.  Well, his consultant was sort of joking when he told us that!

It is early days for me, but so far that side effects have not been a problem, And the actual process is far less intrusive than chemotherapy. I had to discontinue my chemo because of neuropathy in my feet. I was not referred for Cabazitaxel because it was thought it would make the neuropathy worse.

My oncology consultant, and the nuclear medicine team, are adamant that the blood pressure increase is not caused by the 223. They say that the references on the internet to it being an "uncommon" side effect are unreliable. So, I am just trying with the GP to manage it and continuing with the treatment.

I'm very interested to hear that hypertension is associated with zoladex, since I'm also on that.

Good luck with finding more information. My consultant was very enthusiastic about Radium 223 and I'm hopeful that it will help. However, I accept that my condition is terminal and that it is only likely to slow down the spread to the bones rather than to provide any kind of cure.

It is early days for me apart from the blood pressure, which might or might not be linked, I have found the side effects to be minimal. Also, the actual treatment is far less intrusive than chemo.

My husband’s is also terminal but we’re hoping for anything that can give him more time.  I’ve learnt that he can only have Ra-223 as long as it hasn’t spread to the organs.  We won’t know whether it has until he has his review in a week’s time so are crossing our fingers for now. 

I must admit that, having searched elsewhere, the only mentions of hypertension are on the Drugs.com and Mayo Clinic sites.  It seems you can’t believe everything you read.  The doctors are very anti about us googling anything presumably for that reason,  

My husband was lucky in suffering very few side effects from 10 Docetaxel cycles, which didn’t include neuropathy although he’s lost most of his finger and toe nails, so they felt he was able to tolerate Cabazitaxel, from which he’s experienced even fewer side effects.  It seems strange as it’s supposed to be the stronger of the two but unfortunately hasn’t stopped his PSA rising to 106. 

I’ve managed to track down a few recorded experiences by googling ‘Ra-223 reviews’.  The first ones, from a couple of old Macmillan threads and on Drugs.com are all unfortunately rather negative.   Various side effects mentioned in the posts are agonising LB pain, extreme fatigue and listlessness, sudden weight loss, damaged liver and body swelling due to cortisol over-production, whole body muscle pain,  affected bone marrow. . 

Oh dear, that sounded all rather alarming, especially as it’s supposed to reduce pain!  I wondered if any positive experiences had been reported. 

Yes, there were a few, from people who had completed all 6 treatments with hardly any side effects as well as those who were partway through them.  Low blood count was mentioned, and one report of light sensitivity in summer.  In some cases their PSA spiked (known effect) but then reduced after 2/3 treatments, in others it didn’t make any difference.  Some said they had a lot of pain to begin with but it went away after a few treatments.  One man had tolerated it so well that after an interval he was deemed suitable for a second round of treatment.  As regards life extension, I only saw two mentions from partners;, one said 4 months, another said 2 years.  (I’m a member of Health Unlocked and found some of the above on their PC forum.)