Search results for "radium 223"

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 . 

Hi guys , just a quickie. 
Had my radium Tuesday all good as planned. Although I need to be re weighed for the radium dose as I’ve lost weight I’m getting close to the dosage tolerance . I.e getting too much. Nurse spoke to my Consultant and he has increased my steroids a little to 4mg and 2mg alternate days. See how it’s doing on 24th when I see him next. 
He’s also looking at my hormone therapy Relugolix to if there’s something else to try. Although it’s a new pill I believe for the U.K. so difficult to know about side effects. 

I’ll get my blood test results and PSA when I see him. Be nice if the PSA has dropped a little. 

Still having my naps and early nights. 

So hope you’re all keeping well? I’ll pop back in the Pub shortly.

Take care 

Phil

Really good to see your PSA reduction so soon with the Relugolix Tombone. Let’s hope it continues . 
I see your suffering the tiredness though. I’m still getting that too, although can’t say for sure what’s causing it. I’ve had a 5 week break from the Radium and they say side effects are minimal with that but who knows. 

I may ask my Onco about changing from the Relugolix . I’ve been on them all except Decapeptyl. See what he says as the tiredness is getting me down now.

Still getting taste issues and poor appetite but again what is the cause ?? 

Take care 

Phil

Hi guys. Just to update my little thread with the latest. 
Was due my radium Tuesday but hadn’t received a letter or a call. After leaving many messages and then hanging on at Nuclear medicine they answered at 10am and told me the radium was postponed for a week and they’d phone with a time. Was a bit annoyed no one had called me.
Well we were at the hospital Tuesday for the wife’s physiotherapy and nuclear medicine called so I said give us 30 mins and we go up there.

So we get there and they told us Oncology hadn’t ordered the radium in time. No idea why. So we have to go to oncology next Tuesday before the radium for a check over and we’re gonna try to find out what happened. Certainly don’t want it happening again and we old have liked better communication…! 

Anyway, hopefully all will go to plan from now on. 

I’ve started to get some pain in the front of my chest now in addition to lower back. So I’m gonna ask in oncology next week if it’s ribs or vertebrae pain. 

So take care chaps. 

Cheers

Phil

Oh well, trials and tribulations…

Take care

Phil

Hi guys.

Suzz, must be so difficult with COPD in this weather. I’m suffering a little with both my lower lung nodes being collapsed but still waiting for respiratory referral to come through. But I’m ok if I just keep in the shade and we have 2 good fans indoors. 

Im supposed to be having my Radium 223 today but not received a letter or a telephone call. Tried leaving phone messages in Oncology and Nuclear Medicine. We were told Nuclear Medicine opens at 8am . Kept phoning and now the message says they open at 9.45am… 

I am presuming I’m not having it as they'd be hounding me as it only lasts 2 days and they don’t want to waste it. My oncologist will be furious as it’ll have to wait a week now. We are up the hospital this afternoon for the wife’s physio so we’ll go in and see what’s happening…. 

I think the Government needs to invest in a decent computer system that aligns all the hospitals and departments. 

Anyways, take care all

Phil 

Hi Phil. Sorry to hear things aren’t going exactly to plan. Hopefully the scans and x-rays will show some improvement. Seems like ages to wait for 8 weeks. 

Good luck with the stent today. Hope that all goes well. 

Spoke to one of my team yesterday and she said it’s good my PSA has come down to 54 from 56. Must admit last time I heard it was 48. But it’s bouncing around that level. Anyway she said all good for the next radium in 2 weeks.

Thinking of you buddy . Everything crossed for you …👍

Take care 

Phil

Hi Phil.

Glad your PSA still coming down. Shows the Cabazitaxel is working. I did get a week or so of bone pain after starting the Radium so started taking co codamol at bed time and seemed to work. I take them every night now. You may recall I changed Hormone therapy at the same time I started the radium so don’t know if that made any difference. I changed from Degarelix to Orgovyx. Definitely better having pills than the monthly injection which could be very painful and caused bloated stomach.

My consultant said the other day he’s pleased the Radium seems to be working as there’s only Cabazitaxel left in the box now. 😳

Feeling a bit tearful today but I’ll get over it. Friends coming round tonight and we’re getting a takeaway… I’m hoping I can at least stay in the same room or even have a few mouthfuls… Had a bad day yesterday with taste / gagging and so didn’t eat much . 

You can tread on my thread whenever you like Phil. 

Cheers guys

Phil

Went into hospital yesterday to see the specialist nurses but she’d spoken to me on the phone and arranged for my consultant to be there too. Really appreciate her thoughtfulness. 

So he’s upped my steroids back up to 2mg from 0.5mg and I’ll just have to deal with weight gain and moon face.. as long as I feel better. 

He also increased my calcium tablets but have to stop them around the Radium.

I’ve got some new anti nausea tablets too. So hope all that helps and will start eating soon. He says blood tests show everything is going to plan. Organs all ok and PSA bouncing around just above 40. 

6 weeks till next f2f consultation. He said phone the CNS nurses if there’s any problems. 

 Cheers 

Phil

Quick update. Latest blood test showed CRP up to 139 so GP made me an appointment for yesterday afternoon at 5.30. Told her about my taste issues and lack of appetite and she said go to A&E and wrote a letter to take. 

Well we all know what A&E is like but we got seen. They did another blood test and my CRP had gone down to 40. Doctor said it could be the Radium doing it . But we just said we are here because of my mouth and appetite not the CRP. She said what would you like us to do 🤔… 

They ended up giving me an infusion of an anti nausea drug Ondensetron with a prescription for pills. Well I couldn’t eat one mouthful of cereal this morning as the milk tasted off. Tried a slice of toast - no good. So not convinced the new meds gonna work. 

Palliative care nurse calling today…. We have discussed putting steroids back up to 2mg from 0.5mg. 

All my organs are within range so I just don’t know what they can do but I can’t go on like this. 

Will keep you all posted .

Take care

Phil