Simon Story Chapter 2

User

Posted 29 Oct 2015 at 21:07

BLOODY FANTASTIC I haven't looked in for a while and as soon as I did I saw your update. WAY TO GO SI SUPERMAN what can I say except BOOM FOR BONFIRE NIGHT when you next visit Jamie give it with both barrels.

I suppose the stats are

FOSTERS 1

TURMERIC 0

This has made my day.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Oct 2015 at 02:38

Just picked this up in Hong Kong and Another good day for you. These results are amazing considering your history. Long may it continue, maybe I'll follow the fosters diet too makes more sense than the Plant.

User

Posted 30 Oct 2015 at 09:16

Many thanks for your reply's i really appreciate them.

Paul & Julie, yes the fosters diet is going well http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif Jamie said he had had two patients with similar stats to me and with both of them it spread to the liver so i thought make the liver not very appealing hence the fosters.

Mo you know me to well, but Jamie bringing my appointment forward two weeks has made me rush a bit. The plan back in July was due to the Girls going up to secondary school and school holidays being the time we make memories what ever happens with the cancer i would not do any hardcore treatment, touch wood nothing happened.

But i am a great believer in playing around with treatments and not letting the cancer get to familiar with them. After looking around the internet for studies on my sort of cancer a friend found one and it made interesting reading.

Records of 3800 men was checked to find men diagnosed with PSA <10 and more than 5 areas of spread, 44 was found, the average response to HT was 7 months, 5 had early chemo 3 responded well but two weeks after finishing the cancer progressed. 30% went to soft tissue and they all died within two years.

So i know Jamie's choice is go back on Abbi, mine is stop HT for six months, my PSA has been undetectable for over two years and i fancy a break and i would like to see what happens.

Another one of Jamie's is 6 cycles of chemo, big No from me i would only do chemo again if my cancer was wide awake and bright eyed and bushy tailed, so that would mean no HT and testosterone patches prior to starting, big big NO from Jamie.

So lets see what happens on Thursday, i am sure we will agree on something http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 30 Oct 2015 at 23:11

Keep it up Simon, yes, Jamie knows best but it is your body so it is up to you to make whatever decision you think.

Chris.

User

Posted 31 Oct 2015 at 00:01

I think the only agreement will be that it's Thursday ;-)

Whatever decisions are made about yiur treatment on Thursday I've decided that I'm going to make sure we have plenty of your medicine in London

Keep at em Si...you keep proving them wrong

Bri

User

Posted 31 Oct 2015 at 22:24

Way back in the early days when you and T were first diagnosed would any of us have given a £50 bet that you would both be here 2 plus years on still standing still enjoying life and giving it ROCK ON TOMMY. None of us will ever know the answers to why or how some men continue to defy the odds. All I can say is whatever you 2 are doing long may it continue. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Loads of love .

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON

User

Posted 07 Nov 2015 at 15:08

Met Jamie thursday

Bone scan no progression

PET/CT no lymph or soft tissue, stable disease.

SPECT small activity in the pelvis area http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So the plan for after Christmas is,........... not mine http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif the only benefit to stopping treatment and watching my PSA is that i would die a lot quicker but probably a lot happier http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So January the 7th i start Enzalutamide for about 4 months then stopping for a couple of months then back on Abbi, the thought is to keep chopping and changing and confuse the cancer or was that me http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

It was a really good meeting, i got nothing i wanted and he got everything .......................again http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Don't deny the diagnosis; try to defy the verdict

User

Posted 07 Nov 2015 at 15:24

Si
Ha ha revenge of the cutest, fittest onco I have ever met!

All sounds like a very good plan he clearly wants to keep you with us a lot longer. Phew!!

I bet you had a few extra Fosters just because you could.

Back in UK late yesterday and travelling back via Elsie 's on Tuesday. Will you be in for a cuppa about 12 or so?
Xxx
Mo

User

Posted 07 Nov 2015 at 15:30

Great approach, great you can access both drugs. Hope the enzo causes you no unwanted side effects. Seems a good review to me!

User

Posted 07 Nov 2015 at 17:05

Si, I don't think it matters who wins the little battles at each of your appointments - there is a bigger war going on which you are nailing together - I can't think of a better build up to Christmas x

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

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

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

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

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 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

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

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 15 Jan 2016 at 19:34

Thank you so much for your replys
I am very much in the doghouse for knocking the treatment on the head, it's quite funny how many people have an opinion
All I can say is live in our shoes for a couple of days 😡
Anyway three weeks of no HT and I have the flu luckily it is not the dangerous variety MAN FLU
But we will manage
So now I sit and wait for some much needed good news from some special people that joined around the time I did
Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 15 Jan 2016 at 22:50

Well done Simon, (and George) with your results, when all is said and done it is our bodies we are talking about here.

I'm blood and Onco next week, so we'll see.

Chris.

User

Posted 15 Jan 2016 at 23:24

Nice one Si

Great to take control isn't it, but don't forget what George said about keeping a close eye on the PSA.

All the best

Roy

User

Posted 16 Jan 2016 at 20:14

Originally Posted by: Online Community Member

And your point is? LOL It's only because they care mate.

As long as you stick around to drink beer and be a Family Guy, there is no problem.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

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 17 Jan 2016 at 14:39

Superb news Si - but who are you in the dog house with? Surely not Ness?

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

User

Posted 17 Jan 2016 at 14:40

PS Great response for you as well George :-)

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

User

Posted 21 Jan 2016 at 14:33

Simon

Thank you, thank you.
I have had so much fun reading your entire journey ( the heart stuff was scary tho!)
I am at pretty much at the start with widespread bony mets and tumours in the lymph nodes. Couple of weird things though, never found the original tumor and i have no symptoms. have started with ADT and chemo. The journey awaits but I do feel positive.
I am also a beer and football fan..but Fosters, really?? haha this could be the real problem.
Spurs win to win the PL and I will not lie down before that happens, which of course guarantees me a long life :)

Martin

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"

User

Posted 21 Jan 2016 at 14:58

Originally Posted by: Online Community Member

Spurs to win the PL

They are not going to win the FA Cup this year, the mighty ColU will put paid to that!

User

Posted 21 Jan 2016 at 15:02

Martin, what do you mean by 'they never found the original tumour'???? It must be in your prostate somewhere, mustn't it?

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

User

Posted 21 Jan 2016 at 15:13

Seriously Lyn, the original tumor has never been found.
High PSA and analysis of a lymph node biopsy says that it is PCa. (I did say that it was weird....:)
They talk about a micro cancer, but that seems to be immaterial now.
And ColU (i did not recognise the user name straight away, but look forward to the match!!)

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"

User

Posted 21 Jan 2016 at 17:50

Good Lord! Weird doesn't really cover it!

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

User

Posted 31 Jan 2016 at 08:09

Originally Posted by: Online Community Member

Spurs to win the PL

They are not going to win the FA Cup this year, the mighty ColU will put paid to that!

Oooopps!

User

Posted 04 Feb 2016 at 20:23

Si, where have you gone?,just went back to check your stats and you have dissapeared 🤔 More disappearing posts this forum is getting more like the Bermuda Triangle every day.

Bloods as always are bloody pardon the pun fantastic. Happy Holybobs my friend
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Feb 2016 at 20:30

What the?

Something creepy is going on.....

User

Posted 04 Feb 2016 at 20:43

I am not going to buy the tripped on a Can of Fosters skidded downstairs and accidentally landed on the delete button routine. 😋
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Feb 2016 at 20:54

Si
you have somehow got into a page not found loop. I have deleted my post deliberately to try and push you over onto a real page 9 and will post again on there.

xxx

User

Posted 04 Feb 2016 at 20:56

still on page 8, I now think this page rollover error only happens if the owner of the thread hits the bottom of the page with their post.
sometimes this technology is frustrating
xx
Mo

User

Posted 04 Feb 2016 at 20:57

This user testing is rubbish, If I were a project manager I would sack myself !!

User

Posted 04 Feb 2016 at 21:07

So here we go, 7 weeks now off HT PSA <0.01 ALP 41 Testosterone <0.04, Not noticing anything improving much will see what happens in the next 4 weeks

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 04 Feb 2016 at 21:09

Still on page 8, hopefully this will do it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

Don't deny the diagnosis; try to defy the verdict

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