I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

«<1718192021>»

Simon Story Chapter 2

Email this conversation Print this conversation
User
Posted 07 Nov 2015 at 17:53

Very very pleased for you Si.

Well done both you and Jamie

We can't control the winds - but we can adjust our sails
User
Posted 07 Nov 2015 at 17:56

Hello Si
I've eventually taken the time to read your whole story ---- respect from us :-))
Its funny isn't it that we plan the discussions in minute detail over a week , just to find they don't happen like that at all , and even though you've planned everything you come out feeling the " loser " !!
Keep battling
Chris and Elaine

If life gives you lemons , then make lemonade

User
Posted 07 Nov 2015 at 19:09
Great Si,

Really good news. Everything seems to be going well. Jamie is really looking after you.

Keeping fighting it, you're in really good hands.

Hope the girls are enjoying their new school.

Steve

User
Posted 07 Nov 2015 at 19:30

Great news about the scans Si...We shall mo doubt have a wee celebration in December ;-)

Bri

User
Posted 08 Nov 2015 at 09:51

FABULOUS news on the scans Si, so pleased for you keep rocking it Tommy . Your story is such an inspiration to so many people. Enza and Abbi wow with a few Fosters thrown in. Life in the fast lane good job it's after Xmas or you would be giving Santa a run for his money.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Jan 2016 at 21:22

Hi All,

Quick update, Bloods ALP 39, Testosterone 0.04, PSA <0.01 (that's 31 months undetectable)

Appointment with Jamie was cancelled last week as he went to the ASCO conference in San Francisco.

So after much bickering he has now agreed to let me stop HT http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif he is not that happy but understands my thoughts.

I was due Zoladex 3 weeks ago but gave it a miss, so now we will see what happens, will be nice to get a bit of energy back.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 14 Jan 2016 at 21:26

Hi Si,

as ever you are in control, ish? Hope it all goes well for you all.

How's life? Good or GREAT???

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 14 Jan 2016 at 21:48
Si

so you have won another round with the delightful Jamie, he really must wonder what the hell happened when he got you.... mets out of control, scans that made my Christmas tree look like it had a power failure, yet a really low PSA right from the start. I hope you have asked him to put out a "has anybody seen this" to his Onco buddies. Seriously you really do break normals, and someone should be asking why, what is different and how on earth can we use this going forward?

You had a bit of a HT break last year, I suspect this is going to be a longer one and surely if your bloods continue to be good, your scans show no further progression then why not?

I hope that the break gives you renewed energy and I pray that you really are doing the right thing I love you and your family like you are my own, but you know that already

tonight I am definitely smiling and having a drink with you

cheers

xxxxxxxxx

Mo

User
Posted 14 Jan 2016 at 21:52
Whoop whoop so I decide to check in and there is my favourite Guy . Bloods as always awesome in the words of Mrs Brown just how the Feck are you doing it. 🤓

Fosters , zest for life or as I have always suspected just plain old cryptonite. So Superman what ever it is keep on doing whatever it is you are freckling doing.🤗.

May the force be with you. Si Superman sprinkle some magic my way.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Jan 2016 at 22:07

Great results again Si...as always in control...enjoy the HT break and long may it continue

Speak soon

Bri

User
Posted 15 Jan 2016 at 00:09

Hi Si,

Great news about the test results, long may they continue.

Best of Luck with the HT holiday, I hope it goes well for you.  Will be nice to get some energy back.

Take care.

Steve

User
Posted 15 Jan 2016 at 07:03

I don't actually like Fosters. Never have :-(( But thinking of switching.
Your story is an inspiration. You're very brave Si. Great results and long may it continue
Chris

If life gives you lemons , then make lemonade

User
Posted 15 Jan 2016 at 08:59

Great news. Well done. Superman indeed

We can't control the winds - but we can adjust our sails
User
Posted 15 Jan 2016 at 12:02

Great results Si and you have an HT holiday, enjoy it I am sure you will feel good with it. Long may it continue.

User
Posted 15 Jan 2016 at 12:19

Si,

 

Your story is so inspiring.

I've been here a long time and can't remember seeing anyone have such a turn-around after a diagnosis & prognosis like yours.

Jamie's one of the good guys (like my own onco who was also in San Fran last week) but it takes two to tango doesn't it?

Going back years, even our good guys have had serious doubts about letting us quit treatment for a while, but when we politely 'insist', they generally come round to our way of thinking!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

This situation has changed a lot since my own diagnosis. In those days it was 'YOU MUST STAY ON HT FOR 36 MONTHS'.

I knew I was ready to stop at 24 months (I was so damn tired!). Ian, my onco, reluctantly agreed.

After initial resistance it seems more and more oncologists are happy to give us a break if the circumstances are right - and it certainly looks that way in your case.

I truly believe that frequent 'hormone holidays' do us the world of good. Energy comes back, libido returns, and depression lifts.

Have a great holiday from the HT, but don't forget - check your PSA monthly to avoid any sneaky rises.

 

By the way, I'm back on HT, and PSA has gone down from 21.9 in August last year to 0.71 last week, after just two (3-monthly) Zoly jabs.

I get my third one in February.

Looking forward to seeing you looking fit, well and happy at The Mill in June this year,

 

All the very best,

 

 

George

B2PCa
User
Posted 15 Jan 2016 at 12:39
Hi Si,

Brilliant results! Bit scary stopping the HT but I so admire your spirit for life.Enjoy!

Lesley x

User
Posted 15 Jan 2016 at 14:22

its like reading a si wars saga, just read all part 2, I really dont know how you have done this am going to have to have a lie down and a cup of tea to recover

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 15 Jan 2016 at 16:53
Fantastic news Si. I always hold my breath when I read your updates, but so far you've always been a winner. May it long continue and I sincerely hope you enjoy your HT holiday, enjoy every minute.

Lots of love to you and Ness xxxx

User
Posted 15 Jan 2016 at 17:09
Great outcome Si, hopefully you will have a decent period off the HT. Hope you and family have a great weekend.

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 15 Jan 2016 at 17:42

Si,

Does the HT holiday mean that you can drink again? Like a fish? AGAIN??

dave

Do all you can to help yourself, then make the best of your time. :-)
 
Forum Jump  
«<1718192021>»
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK