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Ever Decreasing Circles part three

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User
Posted 02 Jul 2017 at 22:10

This should be dealt with, half the posts on my thread are linked to getting to the next page.

User
Posted 02 Jul 2017 at 23:27

I don't know why people do that - it is a fairly simple matter to just go back a page and scroll down.

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

User
Posted 03 Aug 2017 at 13:12

Five week review of enzalutimide on progress completed. PSA down but only slightly 5.7-5.02 but pain in the legs has eased a little and onco more concerned about general well-being. So good outcome for now and 8 weeks more pills received. So although the fatigue remains quite difficult it seems possible that enzo is working ok for now and let's hope it continues,

User
Posted 03 Aug 2017 at 14:47

That's good news Paul - sod the PSA trends and trust how you feel x

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

User
Posted 03 Aug 2017 at 22:50
Paul, John has been told that radium 223 will not affect the PSA and it is fully e petted to continue to rise but it helps anyway apparently. We start the process on 22nd Aug for six months, things aren't great chez moi, but could be worse so always happy about that. Let's take what we can get at this stage, we are the lucky ones.

Lots of love

Devonmaid xxx

User
Posted 04 Aug 2017 at 00:11

You are right Allison. I am in my sixth year, John is in his seventh so we can celebrate that resistance, despite the problems. Si and Trevor are over four/five years (I think) yet we are all travelling together. Some days I think life will go on for a while, sometimes I am less confident of that. Most days, I wake up, check I'm still here and still functioning and make the most of it and when that day is a bad one I do less and look forward to waking up again knowing that there will be quite a few good days.

To all of us suffering from bony mets let's go as far as we can. As Top Gun would have said 'life is for living'

User
Posted 04 Aug 2017 at 13:05

Good outcome Paul. Many more good days /months/years to come 👍

Bri

User
Posted 04 Aug 2017 at 17:16
Paul you are so right Life is for living although as you say some days that is easier said than done .

I echo what Lyn has said I wouldn't be to disappointed with the PSA levels Trevor has had a few drops on Abbi but over the past two years the general trend has been upwards and totally agree that it is more important how you feel .

Says She who feverishly writes down every PSA level at appointments like a demented secretary . 😉

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Aug 2017 at 12:58

So diabetes appointment today. Great to see better control since change of meds. My hBac1 down from 74-64 which is really good. Lost weight. Vit D back to normal so all in all in good shape to support everything else. No change of meds needed and six month follow up. Quite pleasing and tolerating enzo at moment makes things really ok.

Edited by member 25 Aug 2017 at 19:53  | Reason: Not specified

User
Posted 25 Aug 2017 at 14:43

Well done Paul. Very pleased for you

We can't control the winds - but we can adjust our sails
User
Posted 25 Aug 2017 at 16:32

Paul

Great to hear your news, hope it continues.

Thanks Chris

User
Posted 25 Aug 2017 at 17:11
Good news, hope you keep tolerating the Enzo and six month follow up shows how pleasing the results are. Best wishes, Ian.

Ido4

User
Posted 26 Aug 2017 at 07:34

Keep the good news coming Paul

Bri

User
Posted 26 Aug 2017 at 07:52

Great News Paulhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif 

Don't deny the diagnosis; try to defy the verdict
User
Posted 28 Aug 2017 at 21:53
Fab news Paul ,

I have been a little late replying to everyone I have been knee deep in puppy poop!

Fantastic that you are feeling good and Enzo is helping X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 26 Sep 2017 at 12:52

So latest oncology check up. Slight reversal in PSA trend back up to 6.86 from 5.01. They are overall happy to continue on enzalutimide as they look for a pattern with PSA. I was just under 12 when they started so hopefully it will stabilise for next time. Five week appointment to check PSA so keeping a close watch.

Bit disappointed as I feel reasonable but will wait and hope for a better result next time. I was hoping for a longer respite on enzalutimide and maybe I will still get it but only four months in so far.

User
Posted 26 Sep 2017 at 12:57


Mostly good news then Paul. Very pleased for you and good luck with the next one

Enjoy whatever cricket is left. John took himself off to Chelmsford today so he's getting the last of his summer's cricket fix.

We can't control the winds - but we can adjust our sails
User
Posted 26 Sep 2017 at 20:28
Hi Paul,

The one thing I have learnt in the last few months is Cluck the patterns In PSA it's all,obout how you feel at this moment in time and if you are feeling ok then the PSA is Irrelevant.

Trevor has had huge rises and huge drops nothing makes sense, the old phrase

To day is a good day springs to mind

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 27 Sep 2017 at 21:35
Any rise is a worry Paul, but my friend has found that her hubby's rise has suddenly stopped and it's dropped, no treatment at all! John's is now 42 as the Radium treatment doesn't not have any impact on the PSA, so I'm hoping he'll get something added in shortly to tackle that rise. In the meantime, he's ok, obviously someone with cancer is unlikely to be bouncing up and down, but after nearly seven years, we will take what we can get!

Definitely base it lol on how you feel. Fingers crossed for you as always.

Devonmaid

User
Posted 27 Sep 2017 at 22:25

I do feel better on the enzalutimide and I do take heart from that. I guess my concern was that there appeared to be some protocol hidden behind their words. If I reach the PSA I was at before enzalutimide I think they will regard it as failing and stop, whatever I feel. It’s costly and the NHS has its limits. I could be over thinking it but had hoped to get a reasonable period, which of course I may get if the PSA comes back down or stabilises. Sorry just a little unsettled by what the onco said, a new person which is always harder to trust. I shall see the main person before they take action. Anyway five weeks to think of other stuff.

 
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