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

Notification

Error
«<56789>»

Simon Story Chapter 2

Email this conversation Print this conversation
User
Posted 20 May 2015 at 14:15

I am not surprised at Jamie's caution and maintaining HT is a safe route to go. It could not allow the testosterone to do some real damage as that would undo the good work. Hope you are beginning to get used to the HT again and you are feeling ok.

User
Posted 20 May 2015 at 17:26
Hi Si

You always speak highly of Jamie and I guess if he feels that strongly you need to trust his judgement. You will have more bloods in 3 months I guess and that will show if anything has changed?

Looking forward to Leicester, I am on a low carb diet at the moment ( need to lose 10kg for my next challenge) however will be definitely having the weekend off and will be very thirsty by then!

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 20 May 2015 at 18:44

Hi Si

Can only echo what others have said. I just hope the side effects are not continuing to make you feel ill.

looking forward to Leicester

Bri

User
Posted 20 May 2015 at 21:00

Hi Simon,

That Jamie has done wonders with you, and you have done wonders with you as well. Hopefully any side issues are relatively minor and worth putting up with for the longer term benefits?

best to you and the gurls.

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 20 May 2015 at 21:02
Come on mate, I know it must be galling but you know it's right, can't allow the cancer to get a hold, remember our mate Topgun xxx

User
Posted 20 May 2015 at 22:50

I have double checked the number 404 the reception desk said sorry there is no Si Super Man on that number I think you have mis dialled. 

His number is 007 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif. 

How comes Jamie is such a super Guy until he disagrees with you ? http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

As Del boy would say to Rodney "You know it makes sense"

X

BFN

JULIE X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Jun 2015 at 20:28

Thought i better update my thread as nobody can see my bio, PCAUK are on it, only been 4 weeks think they must be waiting for the money to come in from the London marathon.

Anyway bloods last week PSA <0.01 ALP 40 Testosterone <0.4 nearly gone again !!!!

So staying off of the Abbi and steroids for a bit longer.

So nearly two years of undetectable PSA think i need to write a book http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Or i could juice the kebabs and pizza and a bit of fosters .... no a lot of fosters and sell it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

See you all at MOS next week

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 13 Jun 2015 at 22:07

Brilliant news Si, bloods as always are well" SUPER WHAT MORE CAN I SAY". 

Writing a book is a brilliant idea, I would read it you could even throw in a few stories about the ride on , it could be a best seller, we could colaberate.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif. This time next year we could be MILLIONARES.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

As for the Fosters diet what I would say is don't knock it untill you have tried it, it knocks the Turmeric into a cocked hat.  Sounds like my kinda food chuck in some Rib Eye and we are SMOKIN.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

I am going to miss seeing all of you Guys at MOT's I so wanted to be there but as I am the only Mid woof on call I will be needed here buuuuuuuuuut if the puppies come early then who knows I may well make a surprise apperance, watch this space. 

So glad you posted lots of love as always to you Guys.

BFN

Julie X

Edited by member 13 Jun 2015 at 22:08  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Jun 2015 at 22:58
Si I am so happy to see you posting.. I keep telling everyone that your profile has a super bug PCUK can't seem to fix.

Personally I think your profile has been hijacked by the "do you know who I am ?" brigade either that or aliens wanting to stop your survival secrets from getting out.!!

Now I know poor Jamie is going to need moral support at MOTS as you will be saying no more zoladex or denusimab for me for at least 6 months. I think he was secretly willing your testosterone level to stay static so he could avoid the Si strong talk... you really do defy medical logic.

Hope you are having a fun weekend even if the weather here is pants.

See you and Ness at MOTS and I have a rather unusual and unique donation for the chuter ede party in the park event. All will be revealed at MOTS

Xxx

Love you all loads

Mo

User
Posted 14 Jun 2015 at 00:16

Really pleased for you, Si.

Hope this continues.

Steve

User
Posted 14 Jun 2015 at 09:30

Brilliant Si...you continue to amaze us all but also offering hope to.others at the same time

Sorry I won't be there to raise a glass or three with you on Saturday but we can arrange to do so hopefully in the near future

Bri

User
Posted 14 Jun 2015 at 09:41
Great news Si,

An encouragement to us all

Arthur

User
Posted 14 Jun 2015 at 09:53

So Julie is a maybe, Bri is a NO, looks like i am partying with Mo and Steve.

Mo i am intrigued its not a carrot cake with turmeric http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

"party in the park" was one reason for staying off the HT, it was our way of thanking the school for the way they looked after the twins during my diagnosis and Chemo. they leave in July to start there journey through secondary school and thanks to them both girls got excepted into the local Grammar school.

so July 17th is the big party, on the Thursday setting up all the donated marquees, Friday morning set up 25ft bar, pimms tent, 5 bouncy castles, bungee run, 45ft air mountain, hog roast roast, BBQ and stocks to put the teachers in http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif and much more. then at 10pm take it all down.

Early Saturday morning off to London to see Matilda (really bad timing)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Everything paid for by all my works contacts, 

So cancer and HT can bugger off, nothing will get in the wayhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

see you all soon xx  

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 14 Jun 2015 at 09:56

Si,

Absolutely delighted to read your update.

It's an amazing story.
Your oncologist should be writing a paper on you (and I'm not kidding).

Looking forward to see you (and him) next weekend,

(and Ness of course!)


Keep on doing whatever it is you're doing..

All the very best,


George

B2PCa
User
Posted 14 Jun 2015 at 21:03
Si

you can party with me anytime!! I don't think Steve is going judging by his fb post, of course Chris, and Shirley, Paul and Country boy plus Chris and Dawn will be there from Newark gang so I am sure between us we can give Lyn a good ribbing about the poem recital and others who have used the Newark thread to communicate (Topgun if you can hear me wherever you may be the latest posts were nothing to do with me and we have not gone past one page for a do in ages!!)

No it is not a carrot cake.

If you need help setting up I can come over during the day Thursday and Friday as a voluntary helper.xx

Forgot about Matilda ... we can chat about the party at Leicester.

xxxx

Mo

User
Posted 14 Jun 2015 at 21:46
Oh wow Si

What fantastic news, you really are an amazing man. I expect having a gorgeous wife and adorable children helps (at least that's what I tell my own Superman😇).

So sorry I can't come to MOS this year, we shall miss it, every year so far the sun has shone brightly and we have been sun burnt but not noticed due to copious amounts of wine (that's me now John, he's not much of a boozer), so not sure about the Fosters cure, but hey, it's worth a try.

So annoyed to miss Jamie's talk too, is anyone going to video or record it?

Lots of love to you and the lovely Ness and those gorgeous twins

Love Allison xxx

User
Posted 14 Jun 2015 at 23:08

Si, really happy to see your post and looking forward to giving you a hug this weekend. I wonder if we will get Ness on the Harley again or whether it will be Mo this year?

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

User
Posted 15 Jun 2015 at 09:56
Originally Posted by: Online Community Member

Si, really happy to see your post and looking forward to giving you a hug this weekend. I wonder if we will get Ness on the Harley again or whether it will be Mo this year?

GULP!!!!!!

Mo

User
Posted 15 Jun 2015 at 15:30

Great news, Si !!

 

Fiona x

User
Posted 10 Jul 2015 at 10:15
Happy birthday to you, happy birthday to you, Happy birthday dear Si Superman happy birthday to you.

Just one more year and you will have caught me up or if I use female logic I will be back at your age when i go back another year next birthday

Hope all went well with the delightful Mr M yesterday.

xx

Mo

User
Posted 10 Jul 2015 at 11:12

May the sun shine on you all day as you enjoy another birthday! Well done Si.

User
Posted 10 Jul 2015 at 11:16

Many happy returns of the day Mr Si.

Hope it's a very enjoyable day.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 10 Jul 2015 at 11:51
Happy birthday mate, hope you have a great day.

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 10 Jul 2015 at 12:13

HAPPY BIRTHDAY

nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 10 Jul 2015 at 12:30

Si,

Have a very Happy Birthday!

Steve

User
Posted 10 Jul 2015 at 12:46

Happy Birthday Si have a great day. X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Jul 2015 at 13:28

Thank you so much for all your birthday wishes.

Met with Jamie last night, all good news http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif PSA <0.01 (that's two years now) ALP 38 Bone scan, no progression, CT scan, no soft tissue involvement.

For those that went to MOS, the question about why he put me on early chemo, that he couldn't answer because of patient confidentiality.

He has had only a couple of patients with very low secreting PSA and with extensive mets, both of them was hormone resistant from the start and both went to soft tissue, he also found similar patterns with other patients be treated by other doctors with similar diagnosis. 

So rather than start me on HT and wait to see if i was resistant he chose to go straight to Chemo especially as i had mets at the base of my skull.

As this was two and a half years ago before any trial data was available,he still rates it as one of the best decisions he has made. and me too http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Best wishes to all

Si x

   

Don't deny the diagnosis; try to defy the verdict
User
Posted 10 Jul 2015 at 13:50

Originally Posted by: Online Community Member

Thank you so much for all your birthday wishes.

As this was two and a half years ago before any trial data was available,he still rates it as one of the best decisions he has made. and me too http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Best wishes to all

Si x

 

Excellent news for you both.  What a cracking result.

And a happy birthday to you old chap!

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 10 Jul 2015 at 16:20

Brilliant news Si just what I wanted to hear. I have got a good feeling that the next 2 and half years will be just as good. Keep drinking that Lager that's what I say.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Jul 2015 at 18:37
Hi Si,

Brilliant news. A great birthday present.

Enjoy.

Steve

User
Posted 10 Jul 2015 at 18:56
Si

it has been a great birthday for good news in your household.

I am so happy for you and all the family, Karen will be well chuffed when she gets here and I tell her all your news.

big hugs

xx

Mo

User
Posted 10 Jul 2015 at 20:27

Quote "All your news"?

Is there something we are not aware of Simon?

;-)

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 27 Jul 2015 at 13:22

Hi Si, I haven't logged in for a while and don't get updates any more for some reason (even though I have the 'follow this conversation and get email notifications' box ticked) but just wanted to say hi and that I'm so happy to read the latest news. Just brilliant. Belated happy birthday too! x

User
Posted 28 Oct 2015 at 18:15

A long overdue update, firstly my bloods
August PSA <0.01 ALP 40 Testosterone 0.04
September PSA<0.01 ALP 39 Testosterone 0.04
October PSA< 0.01 ALP 40 Testosterone 0.04,
Bone scan today and no progression http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif, SPECT scan today no result yet and CT PET scan Monday then on the 5th of November I see Jamie. (bonfire night )

So happy boy tonight

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 28 Oct 2015 at 18:22

Well Done, Si,

Great News for you all.

Steve

Edited by member 28 Oct 2015 at 18:23  | Reason: Not specified

User
Posted 28 Oct 2015 at 18:46

Good news Si.

Well done and long may it continue

We can't control the winds - but we can adjust our sails
User
Posted 28 Oct 2015 at 19:26
Si

it such a fantastic pleasure being mates with Superman ...Ness and the girls plus the outlaws must all be really over the moon too.

Would I ever love to be a fly on the wall in Jamie's office next week, I can half predict what the conversation will go like.

Seriously though you continue to amaze me, I would love to hear Jamies thoughts and theories on why your cancer is acting the way it is. You are such a rarity but thank goodness you are.

Very much looking forward to seeing you all when I get back to UK

Love you all loads

xxx

Mo

User
Posted 28 Oct 2015 at 19:30

Excellent result!  Good on yeh!

User
Posted 28 Oct 2015 at 20:30
How wonderful, this is the best news ever.
User
Posted 28 Oct 2015 at 20:46
Great to hear such encouraging results for you

Arthur

User
Posted 28 Oct 2015 at 21:08

Excellent results...keep on showing them Si. I think this calls for a celebratory drink or three in a few weeks ;-)

Bri

User
Posted 28 Oct 2015 at 22:07
Si

Great news,long may it continue.

Thanks Chris

User
Posted 28 Oct 2015 at 23:55

Keep it going. Excellent!

Stay Calm And Carry On.
User
Posted 29 Oct 2015 at 01:29

I was just thinking the other day that you had been very quiet - very, very happy to see your update tonight xxx

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

User
Posted 29 Oct 2015 at 07:21

Good news for you all Simon,

Long may it continue.

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 29 Oct 2015 at 07:48
Great to see your continued results Si. You give us all great hope, looking forward to seeing you in London .

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 29 Oct 2015 at 08:54

Great news Si !

Fiona. x

User
Posted 29 Oct 2015 at 10:10
Brilliant news Si keep it up.

Roy

User
Posted 29 Oct 2015 at 11:57

Excellent news Si, you give us all hope.

Paul

User
Posted 29 Oct 2015 at 12:25

Si,

 

Those results are OUTSTANDING!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Your partnership with Onco Jamie is a real winning combination.

Just have to tell you that Lynn and I are delighted to see these incredible figures.

 

As someone said, you give hope to everybody.

Looking forward to seeing you, Bri and Kev at The Flyer soon.

And in 2016. 2017 and on and on!

 

All the very best,

 

 

George

B2PCa
 
Forum Jump  
«<56789>»
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 ▲
©2024 Prostate Cancer UK