Search results for "radium 223"

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

Hi francij1, yes he has been having regular full blood counts for when he was on the Abiraterone and all seems okay there.  Also before the Ra-223 starts when the funding for that has been approved his blood is assessed each time, his last blood test was yesterday.

My OH has advanced castration resistant metastatic prostate cancer (mCRPC) diagnosed March 2023, T3b N1 M1 with latest PSA 63.  He has been prescribed dexamethasone for his wellbeing and I have a few questions about this. He had primary resistance to Abiraterone with both prednisolone and a switch to dexamethasone and was taken off Abiraterone after 7 months.  He then started to feel bad with great fatigue and complete loss of appetite.  In the meantime, a PSMA PET CT scan showed progression of new mets in his thoracic spine.  When we reported to his consultant in July, she put him back on dexamethasone to address this and we are now waiting for Ra-223 treatment.  It is unclear to me if the Abiraterone has damaged his adrenal glands which is why he is feeling so bad or if this fatigue and loss of appetite is just another effect of his prostate cancer progression.  Will he need to take dexamethasone all the time and are there any bad side effects from long term use.  Grateful for any views.

Good luck to everyone

Hi Guys.

Ive been suffering what i consider prolonged Chemo Mouth after having to stop my Docetaxel after my 7th infusion last year.

I was diagnosed January ‘18, PSA 25 locally advanced. Had Brachy and Radiotherapy early that year with Prostap HT. 

May ‘24 after failure of the HT and Radiotherapy i started on Docetaxel chemo. After my 7th infusion in September i was so rough i needed a wheelchair to get around and wasn’t eating at all. So my Onco stopped the chemo and we just had a rest from treatment except the HT. Saw him again in February as my PSA had doubled to 34.

Still no action till April when my PSA went up to 40. I’d had another bone scan and it showed some extensive spread from my knees to my skull.

So May ‘25 started Radium 223 with the intention of targeting those bone Mets. I also changed my HT from Degarelix injections to Relugolix pills on the same day i had my first Radium. 

The issue i have is basically since the chemo finished I’ve suffered with a bad taste in my mouth and my smell is affected as well. Also my appetite has reduced a lot and im not really eating anything at tea time. I can eat sweet things still but savoury especially makes my gag ..

My Onco has upped my steroids to 2mg / 4mg alternate days hoping that will help. Hasn’t done much as yet. But strangely back in May as we went to Center Parcs for a midweek break with the family they upped to 4mg every day and i was able to eat …! The day we came back he reduced them to 2mg. 

So I'm just wondering if anyone has experienced this as well?

Thanks 

Phil

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

Hi

Dad was dx 2010 with Gleason 8 contained to prostate. He had it removed 2011 but his levels rose again. He has since been on casodex and zoladex until last year when we found he had widespread skeletal Mets and lung lymph nodes affected. He was put on Abiraterone and prednisone initially but when levels rose again he was swapped prednisone for dexamethasone. Unfortunately his levels are now rising again and I fear next week they will decide to bring him off Abiraterone altogether.

He is 85 next month with heart issues (AF and Atherosclerosis) he also has peripheral neuropathy so struggles to walk. 

I’m just wondering what we can hit it with now, if anything, and didn’t know what anyone was offered. I’m not sure he’s fit enough for chemo and don’t know if radium 223 would help? He has had a couple of single blasts of radiotherapy to his skull and lumbar but still has daily headaches and said his vision is a bit fuzzy at times. He is also now getting swollen ankles so has been prescribed compression socks for this.

Any advice or stories welcome - thank you 

Hi Phil,

Thank you for taking the time to reply. My partners been having zolodronic infusions for about 18 months now. Although he couldn't have last months due to low calcium levels ( not helped because he hates the calcium tablets). We no longer ask what his psa results are as we feel it just makes us more anxious. He was quite poorly a few weeks ago when we saw oncologist and she said he may not be well enough to start radium or even finish it. However since the steroids and pain med change ( he's also intolerant of co-codamol) he's made great improvement and looks really well. But we have the scans which demonstrate,  It really is true that you can't judge a book by its cover. Because the inside is like the worst horror story.

He still manages to play small games of crown green bowls which he loves but is so fatigued afterwards. The fatigue is the most telling thing, and he no longer has any desire or appetite for a beer. On the odd occasion we do go the pub he has to dose up on anti-nausea tablets before we go. 

I do hope your back pain eases and you enjoy a restful sleep. Andy seems to have developed some really disturbing dreams since being on the new patches. He dreams the bedside lamp is the duvet, and because he was suffering from very bad hot sweats which we were told was likely due to the cancer, I would wake  up to him putting the lamp on and off which we would laugh about in the morning (when I had regained my sense of humour) 😊

One tip we have discovered only recently (which has transformed his sleeps) is  for anyone suffering hot sweats wrap a towel around the pillow. He's gone from having to change t-shirt twice a night to no change now. Unfortunately the lamp is still the duvet🤣

Hi Annie. Sorry to hear about your partner’s situation and that the chemo didn’t work out. That is really gutting when you go through it all for nothing.

I’ve had 3 Radium’s now and I don’t think I have any side effects. I have occasional lower back pain at night which could just be where I damaged it years ago. Funnily enough last night it was painful even though I took my usual night time cocodamol (15.500 strength) took another dose at 2am and managed to get to sleep then. 

I’ve lost a lot of weight recently, almost 2 stone but I’m not exercising or eating much so it’s understandable and I’d put on too much anyway... My consultant has increased my steroids to see if that has an effect. I had terrible chemo mouth after my 7th chemo and they stopped it there as I was very ill and couldn’t eat anything as it all tasted horrible. 

I don’t think the Radium will affect eating or appetite. It’s also an easy and quick procedure through a cannula. I’m also on Relugolyx Hormone treatment and I think that’s more likely to have an effect. 
My consultant says that the bloods are showing the Radium’s doing something although I would have like my PSA to have gone down or stayed stable instead of going up quite a bit.. But we have to take whatever we can get. 

I am also under palliative care and they are fantastic. So knowledgeable and helpful. Glad the synthetic morphine patches are working. 

By the way is your partner also going to have the Zolandronic Acid before each Radium? It’s given a week before the radium and it’s also an easy procedure. Just means another visit to the hospital as well as all the blood tests. I have 3 blood tests a month , for the Z/Acid, the radium and for my consultant who I see face to face once a month although he’s just given me longer gap this time of 8 weeks. 

Anyway, hope I’ve been of help and please feel free to ask any questions. 
And it’s great if you can keep some kind of sense of humour. 

Take care, thinking of you both.

Phil