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Radium 223 pain

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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.

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 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

Sorry to see that you are still in pain Sanders, although perhaps having an explanation will give you some peace of mind. You are right; the potential side effects of these newer treatments don't always seem to be explained clearly to patients and I suspect there is a bit of glossing over the negative stuff in the hope that the patient will fall into the group that benefits.

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.

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 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

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