Radium 223 pain

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

Latest news,

My wee consultant is having a field day, she thinks she's sherlock Holmes and loving it. Which I'm grateful for.

So what we have now is too much cortisol being produced by the adrenal glands. This is turn has created all the pain/swelling. In turn it has also pushed the BP through the roof along with high blood sugar levels. On two different meds now to reduce the production of steroids. BP now coming down slightly but not enough to get me home. Next Tuesday looks a good bet after observations.

Still in pain but told it will take a long time for body to recover and on meds for a prolonged period of time. Again R223 being mentioned with regards releasing the overdose of steroids but they're baffled and still unsure.

Thanks everyone for their best wishes and hope you all stay safe.

Cheers

Sandy.

User

Posted 02 Apr 2021 at 22:04

I hope you are home soon Sanders

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

User

Posted 07 Apr 2021 at 20:45

Hi all,

Finally made it home tonight after almost 2 weeks in hospital. It was not nice as I was in my own wee room with no visitors. Guess it's just like quarantine.

Anyway being treated as an outpatient now from next week. Been told by consultant that it's going to be a few months before the body recovers. So home with 2 more meds to reduce cortisol levels.

Still in pain now and again so pain relief plan in place. Still unsure if cancer contributed towards cushings syndrome. Seemingly PCa isn't oneofthose, lung cancer is more connected with the disease and I know I don't have that.

Cheers all.

User

Posted 07 Apr 2021 at 21:07

Really pleased to hear you are back home Sandy. Hope your pain eases soon.

Ange x

User

Posted 07 Apr 2021 at 22:01

Sandy

Great to hear you are back home. Hope things improve, take care.

Thanks Chris

User

Posted 07 Apr 2021 at 22:06

Glad you are home Sanders.

Ido4

User

Posted 27 May 2021 at 20:20

Hi all.

Following my discharge from hospital a few weeks ago I'm still bedridden. Too weak at muscles and appetite still not back.

Just been told that I may not get to my daughter's wedding now. Didn't realise that it may be down to weeks rather than months now with regards life prognosis. McMillan nurses have been great with regards pain relief etc.

So just a big thank you to everyone all for all their help and support throughout the journey. Family, as expected, totally done in. No more tears now only look backpack on memories.

Cheers all

Sandy

User

Posted 27 May 2021 at 20:21

Good luck to others in their battles.

User

Posted 27 May 2021 at 20:40

Sandy I can’t believe this. I’m so sorry for you all. It beggars belief that you are only 5 yrs on with a G9 and have had every single treatment, yet find yourself in this awful situation. Sometimes I wonder if these treatments trigger worse outcomes. I so hope you get to be out of bed again soon. Eat and drink what you can. All my best

User

Posted 27 May 2021 at 21:23

Sandy

So sorry to read your post. Thinking of you. Thanks Chris.

User

Posted 27 May 2021 at 23:20

Hi Sandy,

Glad to hear the nurses are keeping you comfortable.

You and your family are in our thoughts and prayers.

God bless and kind regards

Norm

Edited by member 29 May 2021 at 13:49 | Reason: typo

User

Posted 28 May 2021 at 00:09

Sorry to hear things are not going well... Thinking of you..

User

Posted 28 May 2021 at 18:16

Sorry to hear this Sandy. My OH has now reached the end of all treatments and trials, after spinal cord compression, now under Macmillian care.

kind regards

Sheila

User

Posted 29 May 2021 at 13:34

Sandy its heartbreaking to read this thread for the first time, you sound like such a great guy and it's all happened so fast for you which is shocking. I really hope you get to make it to the wedding but I also hope you can be surrounded by the love of your family and friends over the next few weeks. Thank goodness things are so much further ahead in the UK covid wise than they are here in Ireland.

Xxxx

Misty

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