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Times they are a changing

User
Posted 04 Jul 2017 at 20:13
Hi everyone
We are back from our visit to Oxford Churchill with good news on Radium 223. They are willing to go ahead as they feel that we are able to react quickly to signs of infection and they will monitor. We will go up twice a month, once for bloods and an oncology visit and the following week for treatment. I had resigned myself to this being ruled out on the basis of infection risk but am delighted that they are going to go ahead. The doctor was simply fantastic, she read John the riot act about taking painkillers (he avoids like the plague) as she said it would improve his quality of life. I once again had to contradict him on how he is. Oh he said I've been fine for the last two weeks (he was better yesterday, he's been very poorly for weeks). He also said that he never rests in the day, whereas he's hardly been out of bed in the last few weeks! I think the doctor realised that his memory isn't the best, but mine is ok. Phew. On the journey home I mentioned about the painkillers and he said yes I shall take paracetamol twice a day - argh!!

Good job I love this lovely man, but I do wish I could make him understand that life has been utterly miserable recently and if painkillers can contribute to a better quality of life, he must take them. I will chat to our hospice nurse about this aspect as it's a real worry.

He has to stop taking the diethylstillbestroll, aspirin, ranatadine and calceos, so that's four drugs less anyway.
Doctor also said that Radium 223 does not necessarily reduce the PSA, so that's good to know.

I think we will start the new regime in about four weeks time.

Cheers all
Devonmaid
User
Posted 04 Jul 2017 at 21:03

So please you got the result you wanted DM.

Honestly, our men, what are they like.

We can't control the winds - but we can adjust our sails
User
Posted 04 Jul 2017 at 22:17
Dm ,
Had to laugh at Johns response to your conversation. What is it with our men I have had very similar conversations with Trevor he is refusing the palliative care team but have to admit maybe it is there stubbornness that keeps them going !

If you need advice on the Raduim we have just been through Six months of it.

BFN
Julie
NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Jul 2017 at 22:18

Phew - I am going away tomorrow for three weeks so very happy to see good news - I will worry about you all less :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Aug 2017 at 21:24
Evening all,
Well John finally had his first Radium 223 injection today, thank heavens as I was starting to feel frantic as it's been ages since he stopped his stillbestrill. It was a breeze as noted by others who have gone before on this. The PSA has gone up to 27 which was a bit of a shock, but they don't seem to bother and said that they will record it going forward but not really worry about it. We will try to do the same!

So, they will do three injections over three months then review the situation.

Onwards and upwards
Devonmaid
User
Posted 22 Aug 2017 at 21:36

Best wishes to you
Debby

User
Posted 22 Aug 2017 at 23:31

The journey continues. Hope it goes well for John and it helps to relief symptoms. My onco said something similar about my PSA preferring to considerl things by how I feel. Of course I could get radium 223 at some point so very interested in how it works. Good luck I am thinking of you both.

Edited by member 24 Aug 2017 at 17:14  | Reason: Not specified

User
Posted 23 Aug 2017 at 06:39

Hope all is well
Always thinking of you
Barry

User
Posted 23 Aug 2017 at 08:21

Glad the first on went well DM. Fingers crossed for you both for the others


****

We can't control the winds - but we can adjust our sails
User
Posted 23 Aug 2017 at 20:25
So glad the first infusion went well DM I seem to remember that Trevor felt quite sick a few days after the first round but from then on it was a breeze .
There is a fair bit of loo flushing and washing clothes separately which all seems hard going to start with but once you get your head around it it's ok.

I know they all say at this stage don't fret about the PSA 😄 If only because we all do .
Loads of love. X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Aug 2017 at 00:41

Fingers crossed that starting the Radium puts a perk in his step. If anyone deserves a bit of luck and respite it is you two xxxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Aug 2017 at 07:04

Wishing you both well and hoping all goes well

Bri x

User
Posted 24 Aug 2017 at 07:35
Hi DM,

Here's hoping that everything goes well for you both. Try not to worry.

Steve x
User
Posted 24 Aug 2017 at 08:31
Really hope that all goes well for you both.

Kevan
 
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