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Diagnosed 2005 T4 Dire Prognosis, but still here.....

User
Posted 24 May 2014 17:47:43(UTC)

This conversation is a continuation of the archived thread 'T4 PCa in 2005: Dire Prognosis, but still here...'

which you can find here: [First Page] [Last Page]

 

Well, I hope those links worked!

User
Posted 24 March 2017 11:50:36(UTC)

Dear Friends,

 

Today is an anniversary date I never dared hope I'd see, let alone be posting on here about it! 

Another milestone: 12 years and still counting.

 

I'm so grateful I've had all these years to meet so many new friends and enjoy so many new experiences.

THANK YOU ALL

My urologist was obviously a first class muppet, saying I had just 2 or 3 years left back in 2005. 

 

That first PSA test was done on March 24th of that year, just three days before my 54th birthday. And here I am, 66 in a few days time, and knowing that whatever present I get this year will be a thousand times better than that terrifying, unfogettable one then.

Mind you, it did look pretty scary at the time - a PSA of 182, T4 tumour with spread to seminal vesicles and pelvic wall & floor. However, once I'd met my optimistic oncologist, everything changed for the better.

He said I was young enough and fit enough to have the tiger cells blasted by 37 sessions of RT

Since my RT & HT back then, I've been incredibly lucky that Intermittent HT has worked well for me.

And even more lucky that PCa still hasn't spread to bones or lymph nodes

Apparently, when I'm off treatment, and my PSA slowly rises from 1.0 to 20+ it's because I have 'micro mets'.

Those damn cancer cells never leave, but at least Zoladex can be used to hammer them down again.

 

I finished my latest round of HT with a Zoladex injection in October last year, and am hoping like crazy that I get a decent 'hormone holiday'. Two years would do me fine, as I know the length of those breaks shorten over the years. My first one in 2007 lasted 44 months. Man, I enjoyed that one. :P


What can I say but 'JUST BLOODY GLAD TO BE HERE!!

 

And I'm really looking forward to seeing as many of you as possible at The Mill On The Soar on Sat 1st July, the 10th anniversary of 'The Party At The Mill'

You don't know just how much those get-togethers have meant to me.

I know I've said this before, but we've made friendships that I wished had began 50 years ago.

Out of despair came so much happiness. Who'd have thought it? 

But, I can never forget the great friends who've now passed, from our old 'legends' through to our recent losses.

Every one of those men (and their partners) did so much to help us all.

They're now partying in the sky, and we'll meet again for sure.

That has to be true - Vera Lynn said so!

 

 

Very best wishes,

 

 

George

 

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User
Posted 24 March 2016 13:59:21(UTC)

Dear Friends,

 

24th MARCH - It's here again - and today I find myself looking back on 11years survival on the roller coaster that is PCa.

I cannot believe I'm still here (and still being a pain in the ass).

Not a lot has changed since March 24th 2015. In fact I thought it was looking like a good year without losses until my oldest friend Rob passed on, just 62, and more recently Prof. Jane Plant at the age of 71.

Both had such a great influence on my life and on the fight against cancer, and I'm sure many of you feel the loss of these two remarkable people deeply too.

 

In 2005, my 54th birthday present was that grim diagnosis and prognosis, just 3 days before.

And here I am, 65 on Sunday. Unbloodybelievable!!)

Thank God that in my head I'm still 19yrs old and remain 'as daft as a brush' as Sir Bobby Robson once famously said about a certain brilliant but very silly footballer.

Intermittent HT has continued to be the most effective way (for me) of keeping the tiger cells quiet, and I've now been back on Zoladex since August last year. PSA had risen to 21.9 then and once back on HT it started to fall and is currently 0.410

I hope to be able to take another break from HT in about 6 months time. Hopefully that break will last for a year or so. However, I have noticed that the days of very long 'hormone holidays' are over.

Never mind, even a full year off the injections gives you a real boost in energy and mood.

I know that many of you are still fighting a far harder battle than mine, and my thoughts and prayers are with you.

PCa is still the cruel, sneaky and deadly enemy it's always been.

We must keep an eagle eye on it at all times.

 

Good luck and best wishes to you all,

 

George

 

(And yes, I'm STILL a poor, long suffering Sunderland supporter!)

 

 

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User
Posted 23 March 2015 18:22:59(UTC)

Tuesday 24th March 2015

 

Well, what do you know? I'm still here, 10 years after being told I was on my way out.

My luck is holding, RT was effectively delivered, the first round of hormone therapy worked well, and intermittent HT has worked equally well for the last 7 years.

I'm about to return to treatment after a 15 month break as PSA is rising quickly again.

Results of a CT scan I'm having on April 1st (International Urologists' Day) will decide whether I'm able to try Zoladex yet again.

 

My mantra remains the same: No dairy produce, no red meat, and I have daily veg juices, green tea, and a mountain of supplements.

And I stay very pro-active in the fight against those 'tiger cells', as they were called. Monthly PSA tests and double checking that any referrals for scans or whatever made by doctors has actually reached the department involved.

 

Too many errors still occur between you leaving a consulting room and waiting for a hospital letter to arrive.

If I don't hear anything in 14 days, I ring up the secretaries involved.

 

 

You'll probably have noticed that I've posted this on 23rd March. That's because I would probably forget to do it on 24th.

My memory and concentration is appalling. For instance, I even posted on B2PCa today with the topic heading 'St George's Day'.

I'm never sure what month it is, never mind what day.

 

But hey, it's a small price to pay for my unexpected, continued survival.

And as I sit here thanking God I have survived such a bad prognosis, I don't rejoice. I just feel incredibly lucky to be still around.

I have now lost 40 good PCa friends in the last 8 years, and most of you will have lost many too, but to anyone 'newish' on here, I would say, look around the members of these forums. When you click on their profiles, you'll be uplifted and inspired to see how many long term survivors are amongst us now.

 

Hoping I'm here in March 2016 for another update (I'd better be...I've already booked the B2PCa 2016 annual 'do').

 

Looking forward to meeting hordes of you at this year's crazy weekend in June.

 

 

Stay well my friends,

 

 

George

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User
Posted 24 May 2014 21:12:39(UTC)
Well you are here so something worked,
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User
Posted 24 May 2014 22:10:32(UTC)

Hi George, pleased you found your way on here ...gradually more and more people are finding their way around the new forum. I am sure that we will all get used to it eventually

xx

Mo

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User
Posted 25 May 2014 15:04:27(UTC)

Thanks Mo and Allison,

Putting in Links for this story was easy enough, but the most important thing was placing the post in the new section.
Luckily, that was easy too,because there is actually a topic named 'Personal Stories' on the NEW menu.

However, there is no real place to transfer old 'Treatment' posts, as 'Getting Rid Of Prostate Cancer' isn't an appropriate topic title, is it?

And Mo, I still can't understand why my post to you got lost on here yesterday.
I've done quite a few posts and that's the first time that has happened.
Glad you got my email anyway.

See you all sooooon!


George

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User
Posted 23 March 2015 18:22:59(UTC)

Tuesday 24th March 2015

 

Well, what do you know? I'm still here, 10 years after being told I was on my way out.

My luck is holding, RT was effectively delivered, the first round of hormone therapy worked well, and intermittent HT has worked equally well for the last 7 years.

I'm about to return to treatment after a 15 month break as PSA is rising quickly again.

Results of a CT scan I'm having on April 1st (International Urologists' Day) will decide whether I'm able to try Zoladex yet again.

 

My mantra remains the same: No dairy produce, no red meat, and I have daily veg juices, green tea, and a mountain of supplements.

And I stay very pro-active in the fight against those 'tiger cells', as they were called. Monthly PSA tests and double checking that any referrals for scans or whatever made by doctors has actually reached the department involved.

 

Too many errors still occur between you leaving a consulting room and waiting for a hospital letter to arrive.

If I don't hear anything in 14 days, I ring up the secretaries involved.

 

 

You'll probably have noticed that I've posted this on 23rd March. That's because I would probably forget to do it on 24th.

My memory and concentration is appalling. For instance, I even posted on B2PCa today with the topic heading 'St George's Day'.

I'm never sure what month it is, never mind what day.

 

But hey, it's a small price to pay for my unexpected, continued survival.

And as I sit here thanking God I have survived such a bad prognosis, I don't rejoice. I just feel incredibly lucky to be still around.

I have now lost 40 good PCa friends in the last 8 years, and most of you will have lost many too, but to anyone 'newish' on here, I would say, look around the members of these forums. When you click on their profiles, you'll be uplifted and inspired to see how many long term survivors are amongst us now.

 

Hoping I'm here in March 2016 for another update (I'd better be...I've already booked the B2PCa 2016 annual 'do').

 

Looking forward to meeting hordes of you at this year's crazy weekend in June.

 

 

Stay well my friends,

 

 

George

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User
Posted 23 March 2015 18:44:47(UTC)
Lovin the fact that you are the man George and you are so right about the strength it gives newbies like me that there are so many of you who defy the odds. Maybe they need to change the odds for the better?
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
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User
Posted 23 March 2015 18:52:48(UTC)

Hello George.

Welcome back! I'm five and a half years post DX and although the future's uncertain, I'm certainly intending on being around for a while.

Well done on your decade!!

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.
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User
Posted 23 March 2015 19:01:12(UTC)

Just goes to show how being pro-active can help alongside treatments. Well done George.

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User
Posted 23 March 2015 19:25:38(UTC)

An encouraging read, a feel good story.  Well done indeed George.

dave

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User
Posted 23 March 2015 19:36:48(UTC)

Well done George...without a doubt you shall be there in 2016

Bri

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User
Posted 23 March 2015 21:26:50(UTC)

Hi George,
As a newbie here It is so reassuring to read your story, so thanks for posting. Congratulaions on your decade and your positive attitude towards all this....
With all best wishes,
Miss x

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User
Posted 23 March 2015 22:38:53(UTC)
Thanks for continuing to be an inspiration and hope for people newly diagnosed with advanced pca. Good for you ,10 years on . Congratulations. Cheers. Georgina
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User
Posted 23 March 2015 22:47:10(UTC)
Hi George
Congratulations on reaching 10years, long may it continue.
Lesley
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User
Posted 23 March 2015 22:55:40(UTC)
George
my lovely Geordie friend and poor unfortunate Sunderland supporter!
I rejoice for you and anyone else who can defy all the odds as you have.
You have been there for me from day 1 of Mick's battle and every day since he lost it, just as you are for everyone else. You are without doubt a bolody good man.
xx
Mo
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User
Posted 23 March 2015 23:21:48(UTC)

Thank you, George, for your truly uplifting sentiments!

Best wishes,

Jacey

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User
Posted 24 March 2015 06:27:55(UTC)

Hi, George,

I've just recognised the link: the amazing review of the Jane Plant book on Amazon was written by someone who, from what I've read on your post on here, must be you! (I've just bought it, by the way, just from your review.) My lovely husband was given the results of the biopsy yesterday (Gleason 4+3; fast-tracking to scans etc) and I am still utterly devastated. Can't show him, of course, but have been on here weeping and not knowing where to turn through the early hours of today, and in my rambling around the internet, found the book recommended by someone else on here, read your review and felt a glimmer of hope. To find the reviewer feels like a lost woman finding footprints and a road sign. Just to let you know. Thank you.

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User
Posted 24 March 2015 08:06:09(UTC)

Fantastic, George, long may you continue. As you say....B2PCa !!!!!

 

Fiona x

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User
Posted 24 March 2015 08:57:34(UTC)

George, you are such an inspiration to so many, for Newbies to see your post it must give them such HOPE . "CONGRATULATIONS"

Now you can concentrate on the next 10 years.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 24 March 2015 09:46:43(UTC)

George,

Well done, no forget that, VERY well done on achieving the 10 year milestone.

As regards concentration: 3 mile bus trip to get some special spuds then left them at the bus stop but I did bring other stuff back likes cakes etc. :) - as you say its a small price to pay

Keep doing well

Ray

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User
Posted 24 March 2015 09:54:34(UTC)

George,

you are a good man and an inspiration to all.

I do hope that you know that already.

 

Best of luck with the scan results, hopefully you can continue on with the zolly jabs for a few more years yet...

 

All the best, as always

 

Kevin 

 

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User
Posted 24 March 2015 10:19:09(UTC)

George

 

You are THE man

 

I couldn't have got through those bleak early days without you and the others , most of whom have now sadly left us. You are a true gentlemen and deserve much more recognition for all the tireless work you have put in over those years. PCUK should have a special medal for folk like you

 

I hope to make 10+ myself but it's getting harder .

 

To Insanity & Beyond!

Nil desperandum

Allister
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User
Posted 24 March 2015 12:28:16(UTC)

Dear All,

 

Thank you for your kind, encouraging words.

As always amongst this great group of friends, I saw in your posts determination, hope and priceless humour too!

Where would we be if we couldn't sometimes laugh at the situations we find ourselves in?

Steph, your post really touched me. I am so glad you found a ray of light while you frantically searched the web for info after your husband's diagnosis.

Every one of us here has been where you are now. The memory of those dark, scary early days never leaves us.

In 2005 I was doing the same as you. Within days I found the work of Prof Jane Plant, and it was like a 'eureka moment'.

Then the very first PCa website I found was YANANOW. It opened my eyes and filled me with hope when I saw guys with T4 tumours still around after a lot of years. I hadn't thought it possible after the sheer pessimism of my (ex) urologist.

I joined these forums later that year and so began 10 years of the greatest camaraderie I have ever experienced.

The good people here go out of their way to help you. It's been my pleasure to have gotten to know and meet so many of them of the years.

The depth of experience and knowledge amongst them is profound, and we have some real 'stars' here who have continued to defy much greater odds than I was up against. They 'blow me away' with their courage and wisdom.

 

Steph, I am so glad you mentioned Jane Plant. Yes, I wrote a review a while back and you've reminded me I must write another.

Those of us who have tried to keep to her recommendations have chatted about our feelings on the diet.

We agree that while it isn't a cure, it does seem to keep the cancer under the cosh for longer periods than we ever expected.

 

 

Jane's cancer returned a couple of years ago, and she spoke of it at our June B2pCa 'do. She is once again doing very well.

Here's the latest news on her.

On Sunday 1st February Jane was  70 years old, 28 years after she was first diagnosed with breast cancer and 23 years after she was told she had 2 months to live 'if we are lucky'. On Wednesday 28th January she was told by her consultant oncologist she remains all clear with a tumour marker like that of a normal woman.

 

Good luck to everyone,

Keep on fighting, and most of all,

Keep your sense of humour, even in the hardest days.

 

 

 

George

 

 

User
Posted 24 March 2015 12:44:23(UTC)

Great news George.

Looking forward to a few beers with you at MOS.

Si

Don't deny the diagnosis; try to defy the verdict
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User
Posted 24 March 2015 18:51:28(UTC)

George,

You are an inspiration Sir!  Keep ducking and diving!

flexi

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User
Posted 24 March 2015 19:20:51(UTC)

I salute you George even if you do support the wrong football team!!  You have given many hope -long may it continue. El. 

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User
Posted 24 March 2015 21:50:52(UTC)
Hi George,

Pleased to see you posting and doing so well. I rarely post these days, but read an awful lot. I'm a year behind you, but then only T3b so more fortunate, I guess. In fact I consider myself very lucky, since my treatment in 2006 RP/RT my PSA has never reached 1 (one). Thanks for all your help along the way, I used to worry a lot in the early days, but both you and Terry gave me much appreciated reassure. Now I just get on with my life, in the process of building a new house, which helps to take my mind off health matters.

Keep battling on.

Cheers
Stu
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User
Posted 24 March 2015 22:25:03(UTC)
Thank you for sharing your PCa journey George - this is much appreciated.

Thank you also for the positive attitude you demonstrate.

I agree with your comments regarding a sense of humour - I have found this has helped, particularly in potentially embarrassing situations. I have read some your jokes on the B2PCa site - hilarious!

Sending best wishes.
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User
Posted 24 March 2015 23:22:14(UTC)

Well done George, a 10 year milestone. A great posting and what warm appreciation to you from others, richly deserved, I say.

Good to hear how J P is doing, I tend to follow Prof R T, the Pomi-T bloke, but we share your enthusiasm nevertheless as I'm only 9 and a half years since DX.

Allister, keep fighting!


All the very best to you all.


Chris.

PS, George, I like your "The left part of the brain doesn't know what's right and the right side doesn't know what's left" doing St George a month early indeed.

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User
Posted 25 March 2015 00:42:45(UTC)

Yes - 10 years is amazing, fantastic, wonderful but just imagine how much happier those years would have been if you were a Newcastle supporter.

Love you loads xxx

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


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User
Posted 25 March 2015 13:09:24(UTC)

Thanks for your comments, guys (and ladies),

Stu? Your results over the years have been amazing! And yes, I miss my daily contact and banter with Terry Herbert, (who founded YANANOW).

He is a great loss to us all. I'll never forget the help he gave me, you, and so many others around the world. He left a great legacy, and arranged well in advance to ensure the site remains running well.

Looking forward to meeting you, 'Mr River Tweed' this year. Chris (Exbus) and Shirley will look after you. They are longtime friends of everyone here, and a lovely couple.

 

Lyn, did anyone ever tell you that you've a really cruel streak? And I don't just mean your penchant for severing limbs off defenceless creatures (MartenStoves had a lucky escape after his comment about your Harley!).

 

No, I mean your habit of mentioning  Newcastle United whenever we chat. It brings on a nervous tic. Five minutes chatting (or smoking) with you, and I'm a twitching wreck!

PS. Before Allister shouts at me, I'm smoking very few 'rollies' now, opting instead for my electronic vaper cig, which is in a lanyard hanging around my neck 16 hours a day. It suits me much better than a tie.

 

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User
Posted 25 March 2015 16:04:33(UTC)
Well done George, you're a hero to all of us, and deserve to be.

Really looking forward to meeting you in person in June.

Steve.
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User
Posted 25 March 2015 17:04:44(UTC)

Now that's what I've been waiting to hear Steve

 

You're sounding a lot better, and you'll enjoy the June 'do', specially taking photos.

Some (I can guarantee) could be sold to newspapers, such is the outlandish behaviour of the sane people there.

The complete nutters, on the other hand, behave impeccably!

 

 

Looking forward to meeting you soon.

 

Stay strong.

 

User
Posted 25 March 2015 23:40:48(UTC)

Congratulations George on your first 10 years and here's to the next 10.
Very best wishes for the future.

Barry
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User
Posted 26 March 2015 20:05:03(UTC)
Hi George, you are an inspiration with your determination and for a newly diagnosed member of this exclusive club it is remarkable how much positiveness and courage there is within it.

I know my level of diagnosis is better than lots of others with higher grades, mine is type2 with Gleason score of 3+4, but I think that at whatever level it is better to fight it and have a positive mental attitude. I am ex fire service and have always dealt with life's problems as they occur without worrying about what could be going to happen, it is better to see the enemy and destroy it rather than let worrying destroy you.

Humour is by far and away a great way to cope with stress I have always said that if I lost a leg I would just learn how to hop, the main thing is to stay positive but also from seeing the amount of compassion and knowledge in the short time that I have been a member I can draw strength and guidance for myself and my wife and maybe somewhere along the line my experiences may be helpful to other folk in the same situation.

Thanks for positiveness ..
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Posted 26 March 2015 21:10:17(UTC)

Thanks Barry. and Good Luck with your current leg problem.
Really looking forward to seeing you and Barbara again in June, so get well fast!
...........................................................................................................................................

Chris, your reply is packed with positivity, and I wish you well with every step of your journey.
I think you'll stroll it, (not hop it!).

Stress really is an ally of cancer, so we have to knock that on the head and laugh at it.
Easier said than done, I know because I suffered bad depression which struck out of the blue about five years ago.

Being very stubborn, I was determined to get through it without help, but finally I saw sense and saw the doctor.
Within a month or so I was fine again and I refuse to stress about anything these days.

Stay positive, and stay crazy (it helps!).

Good Luck,


George

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User
Posted 24 March 2016 13:59:21(UTC)

Dear Friends,

 

24th MARCH - It's here again - and today I find myself looking back on 11years survival on the roller coaster that is PCa.

I cannot believe I'm still here (and still being a pain in the ass).

Not a lot has changed since March 24th 2015. In fact I thought it was looking like a good year without losses until my oldest friend Rob passed on, just 62, and more recently Prof. Jane Plant at the age of 71.

Both had such a great influence on my life and on the fight against cancer, and I'm sure many of you feel the loss of these two remarkable people deeply too.

 

In 2005, my 54th birthday present was that grim diagnosis and prognosis, just 3 days before.

And here I am, 65 on Sunday. Unbloodybelievable!!)

Thank God that in my head I'm still 19yrs old and remain 'as daft as a brush' as Sir Bobby Robson once famously said about a certain brilliant but very silly footballer.

Intermittent HT has continued to be the most effective way (for me) of keeping the tiger cells quiet, and I've now been back on Zoladex since August last year. PSA had risen to 21.9 then and once back on HT it started to fall and is currently 0.410

I hope to be able to take another break from HT in about 6 months time. Hopefully that break will last for a year or so. However, I have noticed that the days of very long 'hormone holidays' are over.

Never mind, even a full year off the injections gives you a real boost in energy and mood.

I know that many of you are still fighting a far harder battle than mine, and my thoughts and prayers are with you.

PCa is still the cruel, sneaky and deadly enemy it's always been.

We must keep an eagle eye on it at all times.

 

Good luck and best wishes to you all,

 

George

 

(And yes, I'm STILL a poor, long suffering Sunderland supporter!)

 

 

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User
Posted 24 March 2016 14:52:45(UTC)
We are so very glad to have you here George, your story is a fantastic example of how intermittent HT can be very effective. Well done and keep up the good work!
Love Devonmaid xx
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User
Posted 24 March 2016 15:00:35(UTC)

Unbloodybelievable indeed George - and I love you to bits despite your awful taste in football teams xxx

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


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Posted 24 March 2016 16:55:07(UTC)
Way to go George

next challenge is keeping that daft football team of yours in the premiership

see you at the Mill

xxx
Mo
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Posted 24 March 2016 17:10:18(UTC)

Excellent news George and if the special  birthday is this Sunday Happy Birthday and Happy Easter.  

If it was last then belated birthday wishes !!

We can't control the winds - but we can adjust our sails
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Posted 24 March 2016 17:28:14(UTC)

Thank you, our forum 'Goddesses'

We guys are privileged to have had so many good, supportive, caring (and often downright funny - you know who you are!) women on these boards over the years.

 

Mo, thanks for reminding me, I had forgotten to add my usual message:

 

SEE YOU ALL AT THE MILL IN JUNE!

(and I do hope we get see some newcomers this year too)

Give this a click:

THE MILL JUNE 2016

 

Sandra, yes, I'm 65 on Easter Sunday, and what a great day - British Summer Time arrives!

 

But isn't 'BST' such a misnomer?

 

 

As for Sunderland AFC? Well..........we might just get 3 points on 2nd April.

User
Posted 24 March 2016 21:18:47(UTC)

Hi George,

Glad you are doing so well, especially as a role model for intermitent HT.

Best of luck to the Black Cats on 2nd April.  Hopefully my sick Canaries can get one over on the Magpies to help you out.

Then of course we both have 16th April to worry about.

But hey-ho, there is life outside the Premiership, one of my highlights of 2016 was going to see Colchester v Sheffield United.

Just as exciting as a Premiership game and the tickets were so cheap I could actually afford a pie and a pint at half-time.

I know Jane Plant (God Rest her Soul) wouldn't approve, and a lot of the time, like you, I do my best to follow her example on diet. 

However I don't think the occassional pie will get me to St Peter's gate any time soon.

I had my last HT jab in November and am due my first post HT PSA test next week, here's hoping I don't break the 0.4 threshold my Consultant has set, but if I do I will take solace from the fact that you are letting yours rise to 21, that's what I call bottle.

We hear all this talk of patient empowerment, and taking responsibility for our own treatment, I guess I might be tempted to defy suggestions that I get back on HT too soon?

:)

Dave  

User
Posted 25 March 2016 11:36:53(UTC)
HANG ON GEORGE HOW COME THEY ALL GET GODESS😍 AND I GET FUNNY😜 only joking I don't mind Funny.
Congratulations George, you are such an inspiration here it must give so much hope to other men.
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 March 2016 12:54:32(UTC)

Great post George, Thank you, I'm married to a long suffering Charlton supporter, and a retired musician. My OH was diagnosed about 6 months ago. He's doing really well, and I'm looking towards goddess status ;-) He is awaiting Brachytherapy followed by RT, he's has been on the HT for about 6 months & finds it hard going, not looking forward to three years of it.
This disease is awful, and has changed our lives, on a positive note, bringing us even closer together. I'm very grateful for this site, it has given me information, tears smiles and comfort.

Thanks again.

Leila

User
Posted 25 March 2016 13:01:14(UTC)

Aww Julie, you have to admit, you and Mo, and some of the other girls, have come out with some real 'laugh out loud stuff' over the years.

 

Despite all your worries over Trevor, you can still bring laughter to us all.

I bet Trevor has the same attitude. I salute you both!

I hope you carry on regardless, and keep defying the odds for a long time to come.

All the very best,

 

 

George

User
Posted 25 March 2016 13:33:38(UTC)

Leila, I don't know which is worse - to be on HT or to support Charlton. George is a superhero to cope like he does for all these years ... Sunderland supporters have little to be cheerful about

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


User
Posted 25 March 2016 13:39:03(UTC)

Hi Leila,

 

Good to meet you.

Goddess status? You're elevated to sainthood already having a musician as a husband!!

You poor lass, it's a hard road to follow when you have one of our mad breed at your side.

You should compare notes with St Lynn (my missus)  if you get to meet her at one of the get-togethers.

Mind you I think he and I would have to scarper for a while.

 

Glad to hear he's having such comprehensive treatment, and he shouldn't worry too much about the side effects of HT.

Back in 2005 it was more or less compulsory to suffer 36 months of those injections, but I was on my knees with tiredness after 2 years and begged my oncologist to give me a break. He was very hesitant at first, but then agreed. I managed to go 44 months without treatment.

Since then, like most oncologists, he's all for intermittent HT if we prove we can keep our PSA low for a longish time without the jabs.

 

And this is in answer to Dave's post (above) too.

PSA 0.4 seems a very low threshold to come off a 'hormone holiday' and go back on the injections.

Are you sure he said that figure Dave?

 

During my first break from treatment, we set a figure of PSA 10.0 before I had to hurry back to HT.

Since those days he has watched my PSA results carefully and he now feels I can go to 15.0 or 20.0 before action is needed.

But bear in mind, he ALWAYS has me scanned (CT or sometimes MRI) before I resume treatment to ensure there is nothing sinister hiding.

Obviously cancer cells are active somewhere when my PSA reaches 20 or over, but nothing is seen on the scans.

Back in August, I asked him the big question - 'Where the hell are they?', and he said he was certain I had 'Micro Mets' probably in my lymphatic system, too small to be seen on scans.

Since Zoladex works each time I return to it, then we're both happy to use it when required to hammer down those micro mets.

But as always, I must add that we're all unique, and until immunotherapy is available to us, we're never going to be sure that a treatment which will work so well for one guy will work as well for another.

 

Anyway Leila, Good Luck to you and your husband. I do hope that the brachytherapy will have an excellent outcome.

Stay positive, and always pro-active.

 

All the very best,

 

 

George

 

 

 

 

 

 

 

 

User
Posted 25 March 2016 15:24:04(UTC)

Hi George,

Re '...PSA 0.4 seems a very low threshold to come off a 'hormone holiday' and go back on the injections.

That was exactly my reaction.

Since diagnosis I have been under the wing of shall we call him my main consultant.  I am not sure whether he is primarilly a Urologist or an Oncologist, but he's always been good and straight with me and I have absolute faith in what he tells me.

But radiology is not his forte and for my initial EBRT and more recent HDR Brachytherapy I have been referred to a radiologist, who I also have absolute faith in.

Routinely, ever since diagnosis, when nothing particular is going on, I am invited to an appointment every 6 months with my main Consultant, although sometimes it is one of his housemen who I get to see, I never know who it will be till I get there.  While I have radiotherapy going on I also get to see Radiologist once ever 3 or 4 months.

Now first time around, they had decided I was to have a full 3 years on HT including about 18 months after RT, so I stopped seeing the radiologist, and my main consultant set me a target PSA of no more than 2.5 after 2 years off HT.  Which seemed fair.  In the event I achieved that but then my PSA shot up 2 - 4 - 6 in as many months, so at my next routine visit with the houseman we all agreed that I should go back on HT.  6 months later at an appointment with the main consultant he sort of mused to himself that PSA of 6 wasn't necessarilly the best threshold and he might have let it go higher, however it was too late then I was already back on HT and aggitating for salvage treatment.  

This time around, it is the radiologist who I am seeing who has set the target PSA of 0.4, and I did query it to make sure I hadn't misheard him.  I mean they went to all of the trouble of a template biopsy, deciding which bits of the prostate to cook, and for how long to set the timer etc.  Which suggests that there must have been some bits of the prostate that they didn't fry, and presumablly, while these bits may be poorly from being in close proximity to bits of prostate that had the full microwave treatment, they will nevertheless chuck out some PSA like the ordinary health prostate cells that they are?

So what I think I will do, is obviously wait for my next PSA test, if it comes in at 0.4 or less everything will be hunky dory.  However if it comes in much higher I am inclined to see what my main consultant has to say before I agree to go back on HT.  

As and when I next have HT I will be firmly in the paliative camp, no chance of a 3rd blast of RT, so I will be keen to explore the long term intermitent HT option, as the last thing I want to do, untill I have used up all the other options, is go on permanent HT for ever. 

:)

Dave

     

User
Posted 25 March 2016 15:41:40(UTC)

Interesting, Dave.

I'll email you and we'll compare notes to see if that fast rise you experienced was caused by the same thing that got my PSA shooting up at a rate I'd never seen before - 1.0 to 12.0 in three months.
That was about 3 years ago so I'll double check details before I send the email.

George

User
Posted 25 March 2016 16:39:11(UTC)

Lynn, Being a Charlton supporter is beyond my comprehension, faithful soul checks the  scores every time they play. I make all the right noises, mostly sad type mumblings these days, have you seen their performance! He's been a fan since he was 6 yrs old, now nearly 66, and still a devotee. 

I  am not much better, Shrewsbury town... me and my cousin used to watch from his classroom when he taught at the tech, they played at the gay meadow, ahhh memories of over.. ouch 35 yrs ago.

George, as I write he's playing his strat guitar... and writing some music. My halo is in for a service this weekend, has had many years of good service. I think i prefer goddess, though sainthood has a good ring to it. 

 

Yes, three years on HT seems a bit out facing,I wonder if he could have a HT holiday after his treatments. He is six months in from diagnosis, for a bloke who rarely saw the inside of a GP's surgery he's finding it all it a bit hard.... He has not built up a rapport with his consultants yet, that might be my role...? 

Yes, we are both pro-active and active, lots to do... we have an organic smallholding, growing all our own food. Cutting back a bit this year to accommodate treatments.

Right, a cuppa tea beckons.

 

Leila 

 

 

 

 

 

 

 
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