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Ever Decreasing Circles part three

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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

User
Posted 09 May 2017 at 21:49

A mixed bag Paul. But as ever you are very realistic about your results and view them with your normal positivity.
I presume it was the male oncol I met in March. He does give time go discuss issues. I'm a bit unsure about all this but isn't the early chemotherapy a proven way forward ?

Great news about stopping the self-cathing as well.

Bri

User
Posted 09 May 2017 at 22:17

Early chemo protocol applies to early stage of diagnosis, Bri, and I was diagnosed before that protocol was put in place. I think chemo will happen if (when?) I start to get soft tissue spread. For now bony mets best dealt with by enzo. But it's there for later on.

User
Posted 09 May 2017 at 22:49

Paul
I hope the enzo works for you as it is doing for me.
I hadn't heard about the neurological problems with the drug.
My onco did tell me that abbi could give problems with the heart and it did give me bad bowel problems so enzo I'm sure is the better choice.

Good luck Paul I'm gunning for you.

Paul

User
Posted 09 May 2017 at 22:59

Thanks Paul. One of the side effects listed is loose and watery diarrhoea. Have you suffered this? One of the sideshows for me is IBS as a result of repeated campylobacter infections. So I have watery poo a lot. Wondered if I might have to expect more with enzo?

I know you have done well on it and still doing so I can only hope I get the same response. I will let you know.

User
Posted 10 May 2017 at 04:27

Enzo had a constipating effect on me so it might just turn out to have a compensating balance to your IBS. Fingers crossed.

User
Posted 10 May 2017 at 08:35

Same here with the constipation though I'm not sure whether that's the Enzo or the HT.
Hope it does balance you up a little Paul

Paul

User
Posted 11 May 2017 at 02:07

Ah love - not entirely unexpected but a disappointing marker that the journey is progressing, all the same. I hope that Healey is right and it dries you up a bit - that would be some consolation at least!

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

User
Posted 11 May 2017 at 08:42

I could do without constipation but as you say maybe I'll get a more balanced outcome. Always a bit nervy starting a new drug just to see first if my body accepts it and then for it to do it's job.

User
Posted 11 May 2017 at 22:28
Ok so the circles are a little bit smaller Biut you still have shed loads of tools in the bag . Something Si said about going back over old threads struck a chord with me and for sure so many who are not here anymore is a sobering fact But there are a few of us oldies hanging in there and my friend you are more than hanging in there. . Yes the scans were not ideal , PSA is showing an upward trend but there are lots of options still to be tried .

Just seen another Birthday celebration has been had so time to celebrate another mile stone .

I don't want you to post this all over Fb but I have got a secret crush on you 😉

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 May 2017 at 22:37

Julie awwwwww....... Now I have to imagine this given five years of hormone therapy but I would be tickled pink with such a revelation. So I'll hold onto that thought even if in reality I have given up looking for my libido last seen circa 2011 when I was on a testosterone gel and feeling like a 15 year old on heat!

I do feel very lucky given the starting point and I remain positive for us oldies - Trevor, and Si particularly and so many more on here but I also remain realistic and make the most of what I can do as tomorrow or some day it will get sticky.

User
Posted 28 May 2017 at 14:37

Just a quick update. Started enzo this week so not time for side effects yet and a few weeks before we see if it is helping. Also had my PIP assessment this week, which went ok just have to await the outcome; 6/8 weeks!

Lost a dear friend to PCa this week plus the horror of Manchester. This can challenge your faith but I blog every week and have tried to make sense of it. You may be interested.

https://yorkhull.wordpress.com/2017/05/28/in-memoriam-kw/

User
Posted 29 May 2017 at 01:38

Best of luck with the enzalutamide Yorkhull. My other half started about 2 weeks ago so I will follow your experience with interest. Yvonne

User
Posted 29 May 2017 at 17:50

Hi Paul

Read your blog of which I will revisit. Comes at a reflective time for me. From those I know on PIP I can't see you having problems but?

Thanks and good luck

Ray

User
Posted 29 May 2017 at 22:07
It's been a Clucker of a week hasn't it, sadly I am old enough to remember the IRA bombings and it seems sometimes we are no further forward on the those terrible dark days .

So sorry to hear about you friend Paul even when we have time to adjust to the inevitable it is still a shock .

So Enzo started I have got everything crossed that things will improve for you . I keep meaning to ask if you are on Zometa ? It worked wonders for Trevor's bone strength and pain .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 May 2017 at 23:50

No mention of something ever. They have checked for bone thinning which they seem worried about and I did see an orphan-education surgeon but he thought I was fine. So I think they think the bones are still strong enough.

It was a bad week last week but life has to go on,

User
Posted 30 May 2017 at 00:08

Fingers crossed re the enzo Paul and I will be thinking about you in the lead up to Kevin's service

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

User
Posted 31 May 2017 at 17:15

Thanks Lyn. Done a week now and feel ok. Went to spend time with family to plan a day's celebration. Great children.

User
Posted 31 May 2017 at 17:47

Originally Posted by: Online Community Member

Thanks Lyn. Done a week now and feel ok. Went to spend time with family to plan a day's celebration. Great children.

 

Perhaps you've got great children because they feel they've got a great dad !!! Well deserved

We can't control the winds - but we can adjust our sails
User
Posted 12 Jun 2017 at 16:25

Ok the results of the PIP application. I have been awarded enhanced mobility and enhanced living awards, the latter I did not put a strong application in for. But I have been awarded both. It feels a little emotional. Need to think carefully what to do, think I will lease a car, giving worry free motoring, get a scooter, using the back money they have already sent and consider some help at home with cleaning etc to help my son's efforts.

I am overwhelmed with this really, I had hoped for the mobility support but surprised by the living award. My doctors must think I am in a worse state than I thought!

Nearly three weeks of enzo gone now which has been largely unproblematic. More fatigue but that's cumulative and not much more than I've already experienced. It has settled my IBS down a bit ironically now somewhere between constipation and diarrhoea, which if this becomes a pattern would help so much with daily living.

Two weeks to PSA and then, hopefully see if it's actually working. I have already reduced my daily dose of paracetamol so wonder if there is evidence of slight improvement there. Will just have to wait and see.

User
Posted 12 Jun 2017 at 18:45

Great news Paul and gives me hope for the social care system in this country. A lease car sounds a wise choice.

Fingers crossed for you that the enzo does its thing.

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

User
Posted 13 Jun 2017 at 17:33

Excellent news Paul.

You know you're own situation.
Take it for what it is in that case.

Use it to make your life easier. Why shouldn't you.

This award is deserved. Much deserved.

We can't control the winds - but we can adjust our sails
User
Posted 13 Jun 2017 at 19:07

Thanks Lyn and Johsan. It requires more thought as the awards give me more options than I was expecting. Best to make the most of it, never know how long you have.

User
Posted 27 Jun 2017 at 22:03

A bit of good news after five weeks on enzalutimide. My PSA has halved from 11.98 to 5.7. Great start and got another six weeks to see that the trend continues. No major side effects and hoping some of the pain begins to ease a bit. Onco talked of more palliative radiotherapy but not sure about that yet. Still will see if I can manage without the extra pain killers as the drug hopefully reduces some of the bony mets.

For now a little bit of joy but still feeling for Trevor and Julie's struggle but decided a bit of good news cannot hurt.

User
Posted 27 Jun 2017 at 22:17
Hi Paul

Really pleased to see your psa results drop, long may it continue for you.

Take care

Lesley xx

User
Posted 27 Jun 2017 at 23:14

Well done Paul

We can't control the winds - but we can adjust our sails
User
Posted 27 Jun 2017 at 23:39

Good news like this bolsters us all I think, especially in otherwise dark times. Really pleased for you x

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

User
Posted 28 Jun 2017 at 02:05
Hi Paul,

Very good news with the PSA results. Long may they continue in a downward direction.

Take care and enjoy the cricket season.

Steve

User
Posted 28 Jun 2017 at 06:30
Great news about your results a Paul, always good to read, take care, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 28 Jun 2017 at 10:12

Great and encouraging results Paul

Here's hoping the pain soon starts to subside

Bri

User
Posted 28 Jun 2017 at 18:37
Great news Paul! Really happy for you. My hubby has just been for his Psa blood test today after three really good months so fingers crossed we get some good news from oncologist next week.

Debbie x

User
Posted 28 Jun 2017 at 22:22
Fantastic news Paul your news has really picked me up .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 Jun 2017 at 22:30
Always fantastic to read such great news Paul, delighted for you.

Love Devonmaid xx

User
Posted 28 Jun 2017 at 23:27
Paul

Great to hear your good news. Hope it continues.

Thanks Chris

User
Posted 29 Jun 2017 at 10:41

Thanks everyone a little bit of light which I hope will continue for a while.

User
Posted 02 Jul 2017 at 20:34

Hope you are keeping well Paul,
Missed you at the Mill

Best Barry

User
Posted 02 Jul 2017 at 22:06

Thanks Barry, rather tired but surviving ok.

User
Posted 02 Jul 2017 at 22:07

Page stuck again

User
Posted 02 Jul 2017 at 22:07

And again, drives me mad

User
Posted 02 Jul 2017 at 22:09

We have complained about this but it never resolved. It could be an important post for all to see.

User
Posted 02 Jul 2017 at 22:09

Must be this time

 
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