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Radium 223 pain

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User

Posted 02 Jan 2021 at 20:10

Hi all,

I have posted previously with regards Radium treatment but thought I would repost a new thread.

Is there anyone else on the forum who is undergoing radium 223 treatment. I am currently on my 4th cycle but the pain that I am experiencing is getting worse. Never really had much pain prior to treatment but took my Oncologist's advice to start treatment after Enzalutamide starting to fail and PSA rose quickly. Now after the 4th cycle the pain has increased big time followed by my PSA rising to 16, was 5 at start of treatment. Been told to forget about PSA as it means nothing and it was expected to rise with radium treatment. My concern is the increase in pain, spoke to Cancer Nurse who contacted my Oncologist and they seem to think this is normal.

Question is does the pain decrease at end of the 6th cycle and does the PSA decrease too. Tried asking the questions but all I get is a smile and told everything will be fine. in fact my pain was so bad that my GP sent me to the A+E department just before xmas thinking I was having a heart attack.

Would be grateful if anyone could give me their experiences. My next injection is in 2 weeks and seriously thinking not going through with it.

Thanks

Sandy

User

Posted 22 Mar 2021 at 17:42

All,

Seemingly it is the bodies own manufacturer of cortisone steroids trying to combat the R223 therapy.

Hopefully the steroids will come back down to normal and swelling will disappear.

User

Posted 22 Mar 2021 at 14:19

A wee update.

5 weeks on from my last R223 therapy and the pain is still with me. Met another oncologist who states that the pain may indeed be coming from the therapy. Seemingly pain may be coming from R223 after all.

Latest news is my face and legs are puffing up in the morning along with the pains. Met my GP this morning who has referred me to the hospital for full blood tests etc. Waiting for a scan too. So just sitting in hospital and waiting patiently.

No regrets on treatment but just wish I had more information prior to therapy. Oncologist stated that there wasn't much information out there regarding pain stats etc.

Take care all.

User

Posted 28 Mar 2021 at 12:53

Thanks Chris,

Fingers and toes all crossed. Plenty of tests planned so they should have an idea.

I'll keep everyone updated for future reference.

Sandy

User

Posted 02 Apr 2021 at 20:56

Latest news.

After a few days as an out patient getting bloods/scans etc. I've now ended up in hospital for at least 10 days so I've been told.

Cause of pain/swelling may be cancer or pituitary/adrulan gland driven. Getting all the tests done to determine where the root cause is coming from.

Bodies own Cortisol level is triple what it should be so now they may be thinking the body is trying to fight off the R223 therapy. Face/legs/hands swollen so not looking too pretty at the moment haha.

Pumpped up with daetatoxomol to counter the cortisol. Brain scan planned, amongst others, for Monday.

I only posted this so others can ask the question if they are posed with the decision to go for R223 or not. Oncologist did say that there wasn't much data on R223. A bit confused that one oncologist did state it wasn't the R223 and another states it may be. As Lynne stated previously that new meds are lacking data.

I've already posted that I don't regret any of my decisions as you never know what is out there as it just may be the golden bullet.

Just the thought of being stuck in hospital for 10 days with no visitors is a nightmare.

Keep safe all.

Sandy.

User

Posted 28 Mar 2021 at 10:05

Hi Chris

Cheers mate, yep ear plugs to hand. The usual village idiot was admitted last night so they came in handy. He didn't stop shouting all night.

Hopefully mate I'll be out in a few days with some answers too. I don't plan to be leaving planet earth anytime soon. Just need to get to the bottom of this latest episode so we can enjoy summer.

Again stay safe.

User

Posted 28 Mar 2021 at 12:54

Thanks to all for their best wishes. It is really appreciated.

User

Posted 31 May 2021 at 18:32

Oh Sandy, I am devastated for you all. Your cancer has just been so persistent and Heaven knows, you have tried everything offered to you.

I am reminded of an old member, Alathays, who was diagnosed at age 51 I think, and also tried every drug and trial going but nothing worked for long. As he was nearing the end stages, he would often say that he wasn't ready to go - one more cruise, one more trip, one more trip to the rugby club. As he often said, it isn't over till the fat lady sings. I hope that the fat lady is locked in someone's cellar right now and you have a bit more time x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Show Most Thanked Posts

User

Posted 02 Jan 2021 at 23:20

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jan 2021 at 23:32

Posted 12 Feb 2018 at 20:26
There is something wrong with the way you are engaging with the search function - perhaps weird filters on your device?

Look up the following members:-
Mollylou
Eleanor
Lost
GlenT
Spurspark
Trevor-Boothe
Quantum

Also search under Xofigo which some members have posted under rather than R223

**************************************

Sanders, the search function doesn't seem to be working for me at all tonight but you may have more luck with this list I posted a couple of years ago.

Edited by member 02 Jan 2021 at 23:34 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Jan 2021 at 11:44

Thanks Lyn

I did ask the nurse previously about the pain and she said it should decrease, that ain't happening so I will need to think long and hard about completing the 6 cycles. I knew the Radium was not a life extender but was told it would probably give me an extra 4/6 months life expectancy. The funny thing is although my PSA was rising prior to Radium treatment I didn't have much pain and didn't need painkillers unlike now. Think it is now a question of quality of life rather than treatment.

I will have a wee look at previous posts from the list that you supplied.

Thanks again.

User

Posted 03 Jan 2021 at 12:28

Sorry to hear you are suffering ! I was tentatively offered Radium 223 and or biphosphonates but given my QOL route he felt both would reduce it at this time despite what’s going on inside me. I have my own tough decisions to make on 15th Jan. HT or more RT or may be told to keep going — I don’t know. PSA never even measured now but prob circa 2000. It doesn’t always mean everything. Generally no pain now , maybe still some RT side-effects , but I do feel like I’m slowing down gradually.

Good luck whatever you decide

User

Posted 03 Jan 2021 at 12:58

Hi Chris,

Hopefully you make the right decision, I am sure you will mate.

Anyway take care mate and let me know what you have decided.

Cheers

Sandy

User

Posted 03 Jan 2021 at 14:22

Hi Sandy, my OH has finished the 6 doses of Radium 223, during the course the pain did improve after 3 rd dose, then gradually got worse, his PSA has gone from 25 to 291 during those 6 doses, he upped his painkillers, which caused constipation, he had a lot vomiting and lack of appetite. He has now started cabazitaxel, which has reduced the pain, also I think the steroids make him feel better, plus the anti sickness pills have helped too. Hope you can get your pain levels down.

best wishes

Sheila

User

Posted 03 Jan 2021 at 15:03

Thanks Sheila

My pain prior to radium was 2/10 it has now risen to 7/10, PSA prior was 5 now at 16.

Didn't have much pain to begin with. Put onto radium because enzultalamide had stopped working.

I'll have a wee think about before my next course. Hoping your OH gets the relief and treatment to help him.

Cheers

User

Posted 24 Jan 2021 at 18:54

Hi all,

Latest news on Radium treatment, pain is still constant so asked to speak to consultant. Sharp pain in pelvic area and muscle spasms throughout torso. Was told that i may have took a reaction to the radium, he asked me to keep going with treatment. I agreed as my phosphate levels were down again which indicated that the PCa cells were being attacked. My consultant has put me forward for a one off blast of radiotherapy next Wednesday. Downside is my PSA is now at 27, but again told to forget about the PSA and that it would unlikely be going back down. Just need to keep faith in the professionals.

Cheers

User

Posted 24 Jan 2021 at 20:27

Good luck with the RT friend. I had 3 blats but be aware they come with their own side effects. I thought I’d got off lightly but they kicked in around week 8 tbh.

Stay strong warrior !

User

Posted 24 Jan 2021 at 21:09

Cheers Chris,

I've had plenty of RT in the past so i know what to expect. If the pain doesn't go down then I think I will bin session 6 of the radium.

Hope your keeping good mate.

User

Posted 24 Jan 2021 at 22:54

Sorry to see this Sanders - you have done well to stick at the R223 this long!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 25 Jan 2021 at 10:53

Thanks Lynn

Did think about binning session 5 but oncologist has reassured me that R223 is making a difference.

But like I said if pain doesn't go down with RT on Wed then I may bin the last session. Thinking more quality of life compared to treatment now.

I cannot seem to make contact with others in similar positions to compare notes. You did supply names previously but i didn't eally find answers to my questions.

My Oncologist told me not many men complete 6 sessions, I was looking for some case studies from guys who had previously had R223. He couldn't really help with that.

Just need to plod on.

Onwards and upwards.

Sandy

User

Posted 25 Jan 2021 at 11:11

Hi Sandy, sorry you are having so much pain. My OH finished his 6th Radium 223 end of November, he managed to control bone pain with co-Codamol and ibuprofen. The main the problem the Radium 223 wasn’t working for him and his psa shot up, he suffered badly with constipation, nausea and vomiting . The oncologist has now got him on cabazitaxel which has enormously, had 2nd now. Have updated his profile, if you wish to read.

All the best

Sheila

User

Posted 25 Jan 2021 at 12:18

Thanks Sheila.

I'll have a look.

My PSA has shot up too, started at 5 now 27 but oncologist told me to forget about PSA, but it is a bit hard not too.

I'm presently taking paracetamol, told to try co codamol but cannot take ibuprofen due to blood pressure meds. I guess I've been lucky with regards side effects, apart from the pain.

Really appreciate the reply.

Stay safe.

Sandy.

User

Posted 23 Feb 2021 at 19:12

Hi all.

Just completed the 6th cycle of R223 and pain level is down. Seemingly pain came from other meds interactions and not R223. PSA at 22 down from 27 on last session. Phosphate levels in bones down to normal so something positive to take from the R223. No regrets at all with treatment.

Fed up with hospitals now so looking to stay away from them for a few months. I'm under no illusions about my future prospects though but hoping to enjoy summertime.

Meeting oncologist in 2 weeks for follow up. Think bone scan will be arranged to assess the R223 therapy.

Anyway take care all.

Cheers.

Sandy.

User

Posted 23 Feb 2021 at 19:35

Hi Sandy. Glad you got through it relatively ok. My fingers are crossed that you have an epic summer , no holds barred :-)

User

Posted 24 Feb 2021 at 10:24

Hi Sanders, good news on the pain front and reduction in PSA. Hope you can stay away from hospital and have a good summer when it come. All the best,

Ido4

User

Posted 24 Feb 2021 at 11:36

Sandy

Some good news in there , sounds like you are dealing with the situation. Take care.

Thanks Chris

User

Posted 24 Feb 2021 at 14:15

Glad it work well for you!

Sheila

User

Posted 24 Feb 2021 at 14:38

Hi Sandy,

Good to hear it wasn’t the R223 treatment causing your pain. You did well to complete all six sessions and it’s great to hear about your PSA reduction and ease of pain.

All the best going forward.

Ange x

User

Posted 24 Feb 2021 at 16:50

Great news Sanders, fingers crossed that it has been worthwhile

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Mar 2021 at 14:19

A wee update.

No regrets on treatment but just wish I had more information prior to therapy. Oncologist stated that there wasn't much information out there regarding pain stats etc.

Take care all.

User

Posted 22 Mar 2021 at 17:42

All,

Seemingly it is the bodies own manufacturer of cortisone steroids trying to combat the R223 therapy.

Hopefully the steroids will come back down to normal and swelling will disappear.

User

Posted 22 Mar 2021 at 23:30

I hope you start to feel more comfortable soon.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 23 Mar 2021 at 09:46

I hope the pain and swelling starts to subside soon Sanders.

Ido4

User

Posted 23 Mar 2021 at 13:26

Sanders

Hope things start to improve soon.

Best wishes Chris

User

Posted 28 Mar 2021 at 07:45

Latest news.

After a few days as an out patient getting bloods/scans etc. I've now ended up in hospital for at least 10 days so I've been told.

Cause of pain/swelling may be cancer or pituitary/adrulan gland driven. Getting all the tests done to determine where the root cause is coming from.

Pumpped up with daetatoxomol to counter the cortisol. Brain scan planned, amongst others, for Monday.

I've already posted that I don't regret any of my decisions as you never know what is out there as it just may be the golden bullet.

Just the thought of being stuck in hospital for 10 days with no visitors is a nightmare.

Keep safe all.

Sandy.

User

Posted 28 Mar 2021 at 09:51

Sandy my heart goes out to you. You’re in that place no-one wants to be. Hope you can get some ear-plugs , but I hope in earnest you get through this friend

Chris

User

Posted 28 Mar 2021 at 10:05

Hi Chris

Cheers mate, yep ear plugs to hand. The usual village idiot was admitted last night so they came in handy. He didn't stop shouting all night.

Hopefully mate I'll be out in a few days with some answers too. I don't plan to be leaving planet earth anytime soon. Just need to get to the bottom of this latest episode so we can enjoy summer.

Again stay safe.

User

Posted 28 Mar 2021 at 10:44

Not much consolation to you Sanders but when Spurspark was on the early trial for R223 he swelled up like a balloon - I will try to find the old posts in case there is anything useful. He didn't regret it either except he complained that his sausage fingers became too fat to type with.

Get out of there as soon as it is polite to do so x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 28 Mar 2021 at 12:32

Hi Sandy,

So sorry to hear you news about extended stay in hospital.Hopefully the medics will finally be able to sort out whats causing these unpleasant symptoms.Radium 223 was mentioned as a possible future treatment option for me if I am not suitable for the new drugs trial for which I am still been evaluated.

Stay strong

Kind Regards

Norm

User

Posted 28 Mar 2021 at 12:42

Cheers Norm.

Just thought I would pose a question that you could ask of the oncologist as mine at the time didn't rely explain to me too much detail. But to be fair I didn't have a clue either.

Whatever you chose mate, good luck with that course of action.

Thanks

Sandy

User

Posted 28 Mar 2021 at 12:44

Sandy

Well that's not what we wanted to hear. Let's hope they can quickly come up with a solution.

Thanks Chris

User

Posted 28 Mar 2021 at 12:53

Thanks Chris,

Fingers and toes all crossed. Plenty of tests planned so they should have an idea.

I'll keep everyone updated for future reference.

Sandy

User

Posted 28 Mar 2021 at 12:54

Thanks to all for their best wishes. It is really appreciated.

User

Posted 28 Mar 2021 at 22:19

Sorry to read this Sanders, I hope you start to feel better soon. Hope you get home soon too.

Ido4

User

Posted 31 Mar 2021 at 06:47

Hi all

Latest

MRI scan carried out to the pituitary gland and brain yesterday. Good news they found a "brain" but no evidence of any cancer or overactive activity to the brain/pituitary gland. So good result there.

Spoke to epicrodogolist who has set me up today for a 2 hour blood test, they are almost sure the overproduction of Cortisol in my body has been created by PCa, R223???, so I've been pumped full of Daetatoxomol over the past 2 days to counterbalance the cortisol. The test should be later today then 7 - 10 days for results. Woke up with a Guerilla hand due to steroids, bloody massive.

Blood test will hopefully get to the root cause so we can get cortisol under control to prevent any organ damage. Oncologist is also back on the case but i won't be diving into any other treatment at the moment. I found a website which lists all the side effects from R223 and it makes you wonder why an Oncologist wasn't too aware of same when I aske questions way back in November when I started to really get these side effects then. Who knows????.

Problem is I can't get home till BP comes down to at least 150/?, presently at 180/?. Been told maybe Saturday if all OK and outpatient next week for BP checks. What I would say is invest in a BP monitor, although some people may become obsessed with if but used properly it is a good wee tool. I checked into hospital with a reading of 229/92, heart attack stuff according to the hospital.

Hardest part is being away from family with no visitors. Not even allowed outside the ward due to Covid security but it has to be done.

Will update when I know more.

Cheers.

Sandy.

User

Posted 31 Mar 2021 at 13:48

Latest,

Part blood tests done, 4 vials taken to check low dosage of Daetatoxomol against cortisol. Unfortunately nobody signed off the 6am Daetatoxomol tablet so the epicrodogolist wouldn't go ahead with the big high dosage test until tomorrow. The test may not be accurate enough.

So tomorrow 16 vials to be taken. The test comes from Oxford University, think it is expensive so they are quite right to wait. Just gutted that I need to wait another day but hey ho these things happen.

Need to find out for definite what is pushing the cortisol. Not sure if cushings disease is the problem but as I said earlier it doesn't look like it.

Sandy.

User

Posted 31 Mar 2021 at 21:49

Sandy

Keep going mate. Sounds like they are keeping you busy.

Thanks Chris

User

Posted 31 Mar 2021 at 22:46

Good luck Sandy. Hope you get your ass about of there asap. Have you approached hospices at all ? Hopefully I’m not as advanced as you but am completely set up with a locally exceptional one when the time comes. Already have end of life drugs in the cupboard and endless support. Don’t mean to sound a downer but give me that over hospital anyway. I freak out there totally and think I would retreat if it comes to surgeries for short-lived gain.

Thinking of you in there x

User

Posted 01 Apr 2021 at 09:49

Hi Chris,

Not even considering a hospice to be honest mate as this wee episode is more to do with steroid levels rather than PCa advancement.

Need to get my bodies steroids in check so BP can come down beforeIcangethome. Although it is connected, they think, to R223 treatment.

Cheers

User

Posted 01 Apr 2021 at 09:59

Latest

All bloods tests were carried out yesterday afternoon. After consultation with Oxford University yesterday afternoon they decided to proceed.

2 hours of bloods done, 15 minute intervals so they could graph progress of bloods mixed with steroids. Just waiting for results now to see next plan of action.

Probably tomorrow before I hear anything now. Although most of swelling coming down as I'm thankfully off Daetatoxomol. Consultant is on call over the weekend and has asked me to stay in hospital so she can oversee me there. Was looking to get home but not sure now.

Cheers

Sandy

User

Posted 01 Apr 2021 at 16:08

You’ll be glad blood tests are completed now, hope you get home soon.

Ido4

User

Posted 01 Apr 2021 at 19:07

Hi Sandy, pleased to hear the swelling is going down and hopefully you’re feeling much better. Has the pain eased too? Sounds like your having a thorough investigation under this Consultant.

Hope you receive some good results tomorrow and that you’re able to go home ASAP.

With best wishes,

Ange x

User

Posted 01 Apr 2021 at 19:47

Stay good friend

User

Posted 02 Apr 2021 at 20:56

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