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Ever Decreasing Circles part three

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User

Posted 05 Apr 2017 at 08:09

Your inbox is full Paul. Can not send you any message.

Sorry to hear that you are in difficulty, hope it gets sorted.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 05 Apr 2017 at 14:42

Hi Paul

Sorry that things are a tough for you Paul. Pain is hard to cope with in its own right but, if my OH's experience is anything to go by, also tends to increase anxiety and tiredness and massively undermines quality of life. That said the new pain management regime - slow release MST and four lots of paracetamol daily - is working really well and he's got both his mobility and his confidence back. Do so hope the same is true for you. And fingers crossed for the PIP.

Take care.

Eleanor

User

Posted 05 Apr 2017 at 17:44

Did you tell them you had been pogo-ing with me?

You perhaps tried to do a bit too much over the last couple of weeks at the wrong time - increased activity, stress and reduction in steroids may not be the ideal combination my friend :-/

Fingers crossed on the PIP application x

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

User

Posted 05 Apr 2017 at 19:02

Thanks all sorry for not responding sooner been out all day today. I'll clear some space in my inbox Dave and I do hope to reduce the pain, felt better today and that was only on paracetamol.

Lyn of course you are right has been a hectic time but try to keep busy if I can. At least I have tried with Pip, I had a whole section on pogoing! By the why why didn't u pop in on your way to my son's school. He said you were very good.

One concern Julie they have with the steroids is diabetes control and that has been difficult of late. I suspect if/when I move onto insulin this will help control as even if I know my blood sugars are high I cannot adjust with tablets. This is why enzo is next, so I don't have to take high dose steroid. See what the scans bring. Be interesting if they ever give me chemo regarding steroids. But not yet I think.

Thanks Eleanor pain management is always a pain! I've had a good year under the dexa as the year previous was very heavy going pain wise. I suppose I fear it going back to those levels and beyond. But not felt bad today and been busy so let's see if I get a reaction tomorrow.

User

Posted 05 Apr 2017 at 20:04

Paul

Sorry to hear of your latest issues, but I am sure your tenacity and resolve will see you through. Take care.

Thanks Chris

User

Posted 05 Apr 2017 at 20:42

Paul,

Sorry to hear of your latest issues , hoping things get better and that you are ok for the 1st June

Regards Barry

User

Posted 05 Apr 2017 at 21:37

Page turning trouble again, first effort

User

Posted 05 Apr 2017 at 21:37

Page turning trouble, the sequel

User

Posted 05 Apr 2017 at 21:38

Son of page turning trouble

User

Posted 05 Apr 2017 at 21:38

Page turning trouble the danish edition

User

Posted 05 Apr 2017 at 21:39

Page turning trouble the danish edition

User

Posted 05 Apr 2017 at 21:40

Made it normal service is resumed

User

Posted 05 Apr 2017 at 21:46

Tell him I tried to search the crowd but failed to spot him :-(

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

User

Posted 06 Apr 2017 at 00:36

This page turning hicup is certainly a pain

A little like you have slipped down a drain

It's massively annoying and incredibly a strain

I keep turning the page with howls of not again

For us oldies we know we are in page not found

For newbies it must be like a merry go round

come on PCUK I'll give you a pound

Please sort it out because my minds not sound

It's a no mans land , a Bermuda Triangle

I can't believe there isn't a handle

Come on guys we invented the mangle ( getting desperate know 😆)

i think it's just a wire in a tangle

I'm not in IT and can't offer advice

But I usually find unplugging it once and then kicking it twice

This has an amazing affect and sorts it Just Nice

If that doesn't work then you need to call the Help Line number I think it begins with an 08 number.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 Apr 2017 at 06:21

Nice one Julie. I had it yesterday on this page and just gave up the effort to turn it I'm afraid. Sometimes (as you well know) it takes two or three posts before it budges and I just didn't have the time to play with it.

Perhaps mine will do it - but I'm not holding my breath!!

We can't control the winds - but we can adjust our sails

User

Posted 06 Apr 2017 at 06:21

Duplicated entry

Edited by member 06 Apr 2017 at 06:22 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 06 Apr 2017 at 09:58

Great post Julie made me smile. I can't believe they cannot sort it but it goes on and on.

User

Posted 09 May 2017 at 16:52

Okay I've reached the enzalutimide circle as my circles just decrease a bit.

Had onco appointment today. Mixed bag on the various results but overall ok. PSA gone up from 3.90 to 10.1, reversing the last year of decline. Bone scan showing further metastases in the right leg and pelvis area and a few new hotspots there, which reflects my experience of increased pain there, rest of bone scan static so good news there. Great news that on the CT scan no developments at all so no soft issues issues at all, so very pleased with that one.

We discussed enzo or Abby; chemo and/or radium 223. Slight concern from onco about some patients having had neurological issues with enzo, thought he admitted this was a small number and not heard it on here. (Anyone heard about this?). Decided best option is enzo, given diabetes but if it causes problems I can switch to Abby within three months. Keep chemo and radium 223 back for now. So decision made and start in two weeks (on holiday next week).

Then saw urologist and he confirmed for now I can discontinue self-catherisation as no longer getting significant retention. Gives relief from that endless task for now. Such a relief just to go to bed without that procedure. No UTI for about 10 months so staying on prophylactic dose of anti-biotic for now. Out of the blue he then initiated a conversation about end of life decisions particularly around when to discontinue treatments. I was impressed that this discussion was taking place even though it is not happening for me yet. Important to have thought through such decisions before they are upon you.

So overall a not unexpected development and still after five years + still moving along to that end point but mercifully slowly.

User

Posted 09 May 2017 at 18:35

On the surface not brilliant news Yorkhull but given your PC history it is still encouraging?

It's good that you can have"proper" discussions with your specialists

Long may you continue to give PC run for it's money !!

We can't control the winds - but we can adjust our sails

User

Posted 09 May 2017 at 19:50

Originally Posted by: Online Community Member

Slight concern from onco about some patients having had neurological issues with enzo, thought he admitted this was a small number and not heard it on here. (Anyone heard about this?).

I remember being warned that there was a very low chance of seizures in the first few weeks of taking Enzo and that should they occur it was a 999 situation. It was detailed in the side effects listed in the leaflet enclosed with the Enzo tabs.

Edited by member 09 May 2017 at 19:57 | Reason: Not specified

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