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Ever Decreasing Circles part three

User
Posted 01 July 2016 13:51:10(UTC)

Great news Paul...

Keep Right On!

KRO...

User
Posted 01 July 2016 15:04:38(UTC)

Hi Paul,

Changes can happen unexpectedly with this disease so this is very, very good news!

Alan

User
Posted 01 July 2016 15:45:33(UTC)
Paul first up fantastic news about your drop in PSA again. The low dose steroid is obviously helping. Sorry to hear about the bug though not nice at all.

I have a theory about the page not founD error I have sent it into the tech team but they ignore me (as many do!)
It looks like it happens when a user has any entry deleted or shortened. The space is freed up within the database and gets reused but the end of page marker is not adjusted.
It seems to occur on users who came over from the old forum. Just a theory
Xx
Mo
User
Posted 01 July 2016 15:46:23(UTC)
Hi Paul
Great psa news, very pleased for you.
Lesley x
User
Posted 01 July 2016 15:56:52(UTC)
Hi Paul

Just caught up with your posts, fantastic news - really really pleased for you. Haven't been a member long but I remembered your kind words to me when my OH was diagnosed last month, will always be grateful.

Debbie x
User
Posted 01 July 2016 17:07:10(UTC)
Yoo hoo Paul, what a turn up! Sorry to hear about the bug, nasty blinking things to get, it can really make you low. I hope you are feeling much better now, especially with this excellent news.

Lots of love
Devonmaid
User
Posted 01 July 2016 17:32:57(UTC)
Paul

Great to hear you good news, hope you can keep the meds wrapped up for a bit longer. Take care.

Thanks Chris.
User
Posted 01 July 2016 17:39:59(UTC)
Such good news Paul. Sorry to hear about the bugs
Best wishes mate
Si
Don't deny the diagnosis; try to defy the verdict
User
Posted 01 July 2016 17:42:36(UTC)

Brilliant news - really pleased for you. Nice to know the enzo is still in it's box waiting.

 

User
Posted 01 July 2016 17:56:51(UTC)

Brill news Paul...i thought about you as i drove through your village today on my way home from work.

Hope the gastroenteritis is sorted soon

Bri

User
Posted 01 July 2016 18:44:41(UTC)

This is just fantastic - this time last year, I don't think you would have believed that 12 months on you would still have in your hand plans B, C and more. Not great about the GE obviously but there will hopefully be some cricket for you to watch this weekend xxx

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


User
Posted 01 July 2016 20:32:31(UTC)
Great News, Paul.

You deserve it.

All the Best,

Steve
User
Posted 01 July 2016 20:34:33(UTC)
Brilliant news Paul on a rainy cold day like today this is just the news I needed.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 July 2016 22:27:57(UTC)

Paul

Really glad to hear the good news 

 

Barry

User
Posted 02 July 2016 12:31:06(UTC)

Thanks everyone for your kind wishes, hope to be off to Scarborough tomorrow to watch some cricket, feeling well enough I think!

User
Posted 23 August 2016 13:24:36(UTC)

Well the steroid days continue. In another great meeting with my oncologist my PSA has once agin gone down this time to 6.73. So enzo firmly in the box. So ironic that my last message above said I'm off to Scarborough as that is where I am off now. Watching cricket rest of the week though had to miss today because of the appointment. So cancer seems to be sleeping at the moment may it have a good rest. I am feeling the effects of 4.7 years of hormone therapy with fatigue, muscle wastage still evident. My walking is poor now compared to four years ago but I am happy to pay that price for this Indian summer and the steroid helps the brain cells as well. I have not had another campilobacter bug so far so even eating chicken again now.

I'm so pleased another respite given.

User
Posted 23 August 2016 14:32:00(UTC)
Great news Paul, only sorry you had to miss cricket! Take care, Kev
User
Posted 23 August 2016 16:48:25(UTC)

Lovely news Paul. So pleased for you.

Enjoy the cricket.

****

We can't control the winds - but we can adjust our sails
User
Posted 23 August 2016 17:49:43(UTC)
Hi Paul,

Really good news and still cricket to watch...you must feel on top of the world just now. Enjoy.

Steve
User
Posted 23 August 2016 18:22:37(UTC)

Wow, that's brilliant news Paul. May the Enzo stay in that box for a long time yet.

Enjoy the cricket and the sun.

Bri

User
Posted 23 August 2016 19:36:25(UTC)

Sweet news Paul

really pleased for you, and long ,may it continue

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 23 August 2016 21:34:20(UTC)

Hi Paul,

 

That is brilliant news!

 

Things are going far better than you dared hope not so long ago.

 

Something is keeping those cancer cells sleeping, so whatever it is, just keep on doing what you're doing.

 

Yes, you'll be feeling the fatigue and loss of energy more now than you did in the early days, but what the hell!?

I'm sure that even as we moan daily about how tired we are, we know in our hearts that it's a price worth paying.

And, we even have some excellent days, don't we? They make up for the 'Zombie' days.

We're lucky guys, my friend.

 

All the best,

An 'Old and knackered' Geordie.

User
Posted 23 August 2016 22:10:20(UTC)
Oh this is good to read, excellent news Paul.

It's strange how some of us seem to respond to various things whilst other don't, there must be something in this if only they would investigate it. September will be three whole years since John began taking Stillbestroll and he's still responding. Yes, the side effects are not great but as we always say, the alternative is much worse.

Cary on Paul!

Lots of love
Devonmaid xxx
User
Posted 24 August 2016 06:49:11(UTC)
P

Great news, really pleased for you. Your attitude to your situation is to be admired. Take care.

Thanks Chris

User
Posted 24 August 2016 08:20:54(UTC)
Paul that is fantastic news. I hope you enjoy the end of the cricket season here, Scarborough is lovely when the sun shines!
The low dose steroids are obviously helping and that is what matters.
Long may it continue my friend

xx
Mo
User
Posted 24 August 2016 10:43:50(UTC)

If you are not careful Paul, you might have to think about looking for a job!

Really pleased to see your update - long may it continue x

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


User
Posted 24 August 2016 11:45:16(UTC)
Fantastic news Paul,
As DM says it is a mystery why some respond better than others and long may it continue for you. I haven't dropped in for a few days but so pleased I did and read your good news. Enjoy that Cricket. 🤗
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 August 2016 15:08:11(UTC)

Good news Paul

Enjoy the cricket this week and..

Keep Right On!

KRO...

User
Posted 24 August 2016 15:22:12(UTC)

Paul
I'm so pleased that things seem to be held at bay. A very stressful time for you I'm sure. Enjoy your retirement by the day and spend that money in the bank on things that make you and your family feel good.
My fingers stay crossed for you




If life gives you lemons , then make lemonade
User
Posted 24 August 2016 16:19:38(UTC)

Paul

More good news. Why they're in slumber land I've no idea. Just fingers crossed they stay in that state.

Ray

User
Posted 24 August 2016 18:32:58(UTC)

Really good news. So pleased for you.

 

Fiona.

User
Posted 24 August 2016 18:51:46(UTC)
Brilliant news paul, long long may it continue. Lovely to hear that you are enjoying life and having some quality retirement time.
Lesley x
User
Posted 26 August 2016 18:12:05(UTC)

Thanks everyone for your lovely thoughts. Sorry I've not replied earlier but I left my iPad at home and have had no real access to the site. Back home from Scarborough after a lovely few days cricket and looking forward to the next few weeks. Thanks again!

Thanked 2 times
User
Posted 27 October 2016 10:07:06(UTC)

Time for an update following my latest oncology visit. Well I am now 10 months on since enzalutimide was to be my next drug and it remains in the box. My low dose steroid is amazingly still doing its job and once again the PSA is down this time it stands at 4.3 from a high of 59 when this started in March. I cannot believe how well the cancer is behaving itself and so I edge confidently towards five years survival in Jan 2017 despite bone met spread. I remain fatigued and my walking is severely compromised now but I'll live with this.

The news is slightly tainted by a continual problem with intestinal gas (flatulence, wind etc) and diarrhoea which has dogged me for at least six weeks now. It makes travel difficult as I am always looking for a loo just to avoid embarrassments. I have now been referred to the colorectal surgeons at the hospital, I seem to be covering more specialists as I go along, thank goodness for the NHS. I am due to go on a last personal trip to Hong Kong in two weeks so could have done without this as it's quite tiring if nothing else.

My diabetes is only just in control and I suspect I am nearing the time when they move me onto insulin. With tablets it can be difficult to control as there is no adjustment and I know my blood sugars seem more volatile. I guess partly the result of all these drugs.

But I never expected to be here for this long and so all these issues are minor irritations as the big issue remains somewhat dormant.

User
Posted 27 October 2016 10:14:06(UTC)

Keep going brother.

Bazza

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.
User
Posted 27 October 2016 10:26:03(UTC)
Hi Paul,

Keep going and enjoy your trip to Hong Kong.

You're doing really well in spite of slight difficulties but you're here. That's the important thing.

Take care.

Steve
User
Posted 27 October 2016 11:31:34(UTC)

Great that the PSA is still holding and that you are well enough to manage another trip to HK - I do wonder if retirement (although a wrench for you) has helped the steroid treatment to stay effective for so long. Perhaps put any reluctance to one side and buy some proper incontinence pants to reduce the anxiety - although I have no doubt your bowel issues are real, I think once you start to worry that there will be an accident, it makes the problem worse. That's my experience of IBS anyway - when it is bad I am constantly thinking about where toilets are .. and even if I don't really need it, I think I do.

Stay dormant, my friend x

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


User
Posted 27 October 2016 12:27:35(UTC)

Brilliant news just in time for your final jaunt to HK Paul.
Sorry to hear about the other issues but hopefully something the medics can sort

Bri

User
Posted 27 October 2016 18:06:54(UTC)

Paul,

That is the best news I have heard on here for a long time

see you in the Flyer

 

Barry

User
Posted 27 October 2016 22:07:42(UTC)
Really great news Paul
Enjoy that trip to HK look forward to seeing you soon
Si
Don't deny the diagnosis; try to defy the verdict
User
Posted 28 October 2016 06:31:31(UTC)
Paul

Great news on the PSA, enjoy your trip and see you soon.

Thanks Chris
User
Posted 28 October 2016 07:47:31(UTC)
Paul
On the whole life is good then!
You deal with any issues stoically which is admirable.
I'm very surprised that you were not warned that steroids (even low dose daily) will raise your blood sugar. It is a small price to pay for feeling so much better.
Mick always said that going onto insulin during chemo was a huge improvement in terms of diabetes control. He had always walked his 10 miles every day which kept his HBA1C in the "very well controlled" range pre insulin. PCa made the walking impossible, you may recall that huge spikes in sugar levels (off the test scale 28+) became a big and dangerous issue for him.
Also long term use of metformin can cause acute and very sudden tummy upsets.

Looking forward to seeing you soon hope you have a safe and memorable trip to HK.
Xx
Mo
User
Posted 28 October 2016 18:02:41(UTC)
Wow Paul lovely to hear your news those steroids are certainly doing there job I told you that you would be up on the roof in no time.
The other issues as you say are annoying and I can imagine slowing you down but my friend say Hello to Hong Kong for me I was there in the early nineties .
Absolutely loved it . Wonderful place , Kowloon and the bird markets not to mention the food and OH Wow the bamboo frames on the outside of the buildings . Don't get me started on the underground .
So glad to hear that the PSA is behaving .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 December 2016 14:35:00(UTC)

So, if I can, let me spread a little bit of Christmas cheer. I have now completed a year on what was going to be a temporary measure before I started to take enzalutamide. Many people will know I was given a steroid called dexamethasone. This was to help me through into retirement. And yet again at today's appointment my PSA has gone down to 3.74, this is from 59 at the beginning of the year. No appointment for another three months, a minor triumph in procrastination. The battle goes on and so after five years I am still here and resisting this advanced metatastic prostate cancer. I for one will enjoy my Christmas on this basis.

That is not to say that the last few weeks have not being difficult for other health reasons. I had a nasty fall about three weeks ago which brought me bad bruising on the left side of my body. This restricted my movements, painful in the day and at night. I don't think I cracked a rib but anyway I just had pain relief which would have been the same even if I had. In the last week it has started to ease and I'm beginning to feel okay again.

I had got this improvement just in time for my colonoscopy. The preparation for this is pretty gruesome and Saturday found me spending most of the time on the loo it took me four hours to watch Strictly as I kept having to pause and dash. The procedure itself went okay and they didn't find anything untoward so for now unless biopsies show any difference I seem to have got irritable bowel syndrome as a result of the compilobacter infection I had earlier in the year but nothing more serious. This could go on for at least the next 12 months but using Imodium I can keep it reasonably in check.

My visit to my diabetes consultant, my third new person in the past year resulted in a rise in my Blood sugars necessitating a change of treatment. I have not yet reached insulin but I am now on an injectable treatment as well as other tablets. I suspect with the steroids and HT this messes with my diabetes and at some point I will be insulin bound. At least at that point I will be able to exert more control over it.

So it's been a hectic few weeks but concluding with the best news of all that the cancer for now is behaving itself. I have all the usual effects of five years of treatment, a lot of fatigue, a lot of aches and pains but much less pronounced than 12 months ago because of the positive effects of the steroid, restrictive walking which shows no sign of improvement, but hey I've had a much better 12 months than the previous 12 months and so I'm going to enjoy Christmas and hope you all do too.

Let's look forward to good 2017 and year 6 of this journey.

Thanked 4 times
User
Posted 20 December 2016 15:00:45(UTC)
Joy of joys Paul. A huge well done and happy Christmas to you and yours. Mine is behaving itself around the 3.5 mark after two years on HT and nearly 7 since DX. Although on Enza as well, I kind of look forward to taking my four horse tablets at night, but not half as much as I'm looking forward to tucking into some turkey and a fine wine this Christmas. Let's do 2017 together with a PSA still in single figures and stick two fingers up same time next year.

Soldier on brother.

Bazza
Barry
I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.
Thanked 1 time
User
Posted 20 December 2016 15:17:15(UTC)

Thanks Baz we will certainly try.

I'm replying quickly as I am stuck at the bottom of the page and the usual problem of getting onto the next page.

User
Posted 20 December 2016 15:17:33(UTC)

Not yet got over page so more nonsense

User
Posted 20 December 2016 15:17:53(UTC)

It's me again just trying to reach page 11

User
Posted 20 December 2016 15:19:35(UTC)

This has been a problem now for too many years surely they can sort this. It must put people off when you click on the link as it says page not known.

User
Posted 20 December 2016 15:20:27(UTC)

So page 11 shows on the recent conversations but all my messages are on page 10. This is my last attempt surely it must jump.

 
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