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User
Posted 13 Apr 2016 at 20:37
Well, three years ago yesterday I was diagnosed with prostate cancer and given a three year prognosis.

I spent the evening with my beautiful wife sharing a bottle of champagne.

My PSA count is running along the floor at 0.01 after a diagnosis level of over 500.

Whilst I'm not cured and rely on HT treatment to keep the status quo it's not too bad a price to pay.

I know I've been lucky and hope that luck will continue for a long time yet, but while it does - happy days!

I still remember walking out of the hospital three years ago in total shock and uttering profanities.

It's nice to look back and realise it turned out better than estimated.

Life is different but 'normal', at least the new normal for me.

Feeling rather chuffed,

Kevin

User
Posted 13 Apr 2016 at 20:37
Well, three years ago yesterday I was diagnosed with prostate cancer and given a three year prognosis.

I spent the evening with my beautiful wife sharing a bottle of champagne.

My PSA count is running along the floor at 0.01 after a diagnosis level of over 500.

Whilst I'm not cured and rely on HT treatment to keep the status quo it's not too bad a price to pay.

I know I've been lucky and hope that luck will continue for a long time yet, but while it does - happy days!

I still remember walking out of the hospital three years ago in total shock and uttering profanities.

It's nice to look back and realise it turned out better than estimated.

Life is different but 'normal', at least the new normal for me.

Feeling rather chuffed,

Kevin

User
Posted 14 Apr 2016 at 07:49
Chuffed you should be, well done!
User
Posted 14 Apr 2016 at 08:10

Hope you pass many more milestones. September will be my 9th DV, although I expect I will be needing some more treatment before very long in order to keep passing the milestones..

Barry
User
Posted 14 Apr 2016 at 08:11

Very good news, keep that going long time. Control at PSA cure level reads good to me.

Ray

User
Posted 14 Apr 2016 at 08:14

That's great news Kevin. Like wise I had good news a couple of weeks ago with no treatment needed except HT. How do you get on with it and manage the hot flushes etc?

Looking forward to some milestones now myself.

Steven

User
Posted 14 Apr 2016 at 08:54

Brilliant news - here's to the next milestone!

Flexi

User
Posted 14 Apr 2016 at 09:19

Hi Kevin
That's a really positive post for everyone thank you , and I hope I can follow suit in your always dignified manner. Best wishes and keep going
Chris

If life gives you lemons , then make lemonade

User
Posted 14 Apr 2016 at 09:37

Great news Kevin, really nice to hear good news all the best Andy

User
Posted 14 Apr 2016 at 09:45

Ah Chilled, what a perfect name it turns out you chose for yourself 😀 It doesn't seem 3 years since you joined - but time flies when we stop counting the minutes and before you know it, you will be marking 5 and maybe even 10 years like some of our other friends on here.

The bubbly was well-deserved, my friend.

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

User
Posted 14 Apr 2016 at 09:57

Originally Posted by: Online Community Member

That's great news Kevin. Like wise I had good news a couple of weeks ago with no treatment needed except HT. How do you get on with it and manage the hot flushes etc?

Looking forward to some milestones now myself.

Steven

 

Hi Steven,

the flushes, aches and pains, memory issues have all become my new normal as I call it.

I chose to live with these issues and not get ratty or upset about them.

My next door neighbour is going through the menopause and we discuss flushes when we meet up for a wine evening :)

I just try to laugh it all off as part of the new (improved?) me.

When balanced with the option, I consider it a reasonable trade off.

 

All the best

 

Kevin 

User
Posted 14 Apr 2016 at 13:23
Great news. Congratulations .

John

User
Posted 14 Apr 2016 at 14:06

Fantastic news.  No wonder you're buoyed up!

User
Posted 14 Apr 2016 at 15:32

As far as I remember Chilled, I thought it was the fact that your PSA was so high that made them doubt the T3. The uro believed that despite the scans you must have some micromets - cheerful souls, some of them. Whatever it was, the care you have had from the trial team has obviously blown away those little PSA-generators!

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

User
Posted 14 Apr 2016 at 16:35

Hi Kevin
I'm well impressed with your progress and hopeful I can follow you as I tread a similar path.

I noticed you too had a high psa and went onto stampede on abiraterone but then you had RT when your psa was about .04 I think. I'm on stampede with HT and enzalutamide (I dropped the ab I after 3 months) and psa now after 15 months is bumbling along at .05.
I wondered if you could share with me the reason you decided on RT when the psa was so low.

Like you I'm also suffering some upper arm pain which will be examined at next on one meeting. I also had knee pains and had them X Ray'd - nothing found and now eased.

Great to read your posts

Paul

User
Posted 14 Apr 2016 at 16:44

Great news Chilled, celebrate good news and "chill" have some more plonk stay positive and look to the future.

Cheers long may it continue, regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 14 Apr 2016 at 19:29
Originally Posted by: Online Community Member
I wondered if you could share with me the reason you decided on RT when the psa was so low.

Hi Paul,

RT was always on the cards for me, as part of the stampede trial it had to be started within a year of starting Stampede.

My oncologist favours shrinking the tumour as much as possible prior to starting RT hence the situation where the PSA was on the floor before RT kicked off.

Wishing you well on your treatment path.

All the best

Kevin

User
Posted 14 Apr 2016 at 20:50
Kevin

Yay, wahoo I am so very pleased for you.

Looking forward to catching up at MOTS

Xx

Mo

User
Posted 14 Apr 2016 at 21:16

Fantastic news Kevin - congratulations!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

User
Posted 15 Apr 2016 at 00:40

Hi Kev,

That's really great news, very pleased for you.  A real cause for celebration.

I've been wondering how you were getting on and for you to post here with this news gives hope to many.

Sorry I won't have chance for a chat with you at MOTS this June, but hopefully I may make it on a future occasion.

Take Care.

Steve

 

User
Posted 15 Apr 2016 at 08:58
Great to hear from you again, I was wondering how things were going for you.

All the best

Alison

User
Posted 15 Apr 2016 at 11:05

Great result, long may it continue !!

 

 

Fiona.

User
Posted 15 Apr 2016 at 15:24

CONGRATULATIONS me young mate!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

 

Here's to many more milestones.

 

I was PMSL at this in the posts above:

 

"All my patients have a three year life span...."  and  by not following the curve he meant "..You are making me look bad and incompetent...please go away!"

 

As you rightly said, Kevin, it was our duff urologists who condemned us to death on diagnosis, not our oncologists.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

If those glorified plumbers can't 'cut it out' they ain't interested.

Edited by member 15 Apr 2016 at 15:24  | Reason: Not specified

B2PCa
User
Posted 15 Apr 2016 at 15:37

Ain't that the truth

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

User
Posted 16 Apr 2016 at 16:34
That's a huge Yay and WHOO HOO from me as well Kevin, my how time flies when you're having fun. So happy to read a good news story and I can't believe it is 3 years ago that you joined our merry bunch.😎

Who said you are not normal? Just give me there address 👻 Sorry misread , the old PCA and HT normal🙃 Norman Normal only those in a new Normal will understand.

Party on down and enjoy that Champers

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Apr 2016 at 09:50
Lovely news keep the celebration drinks flowing 😊
User
Posted 09 Jul 2016 at 09:27

Great for you Kevin, I am pleased that you are getting the chance to see what the state of play is without the impact of HT. I think I would do the same if I was in your shoes, mainly because I would need to know where the line is before stepping over it.

Long may it be positive for you and fingers crossed you can have a few jars to celebrate.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 09 Jul 2016 at 09:37
Nice one Kev

Those courses we took raised our curiosity over what can be tried?

Bear wishes to you and your family including the iguana!

Xx

Mo

User
Posted 09 Jul 2016 at 10:26

Hi Kevin
I'm right with you on this course of action. It's how I'd feel.
Take it easy and good luck
Chris

If life gives you lemons , then make lemonade

User
Posted 09 Jul 2016 at 10:37

Originally Posted by: Online Community Member

My iguana is actually a gecko 

Kevin

 

I would put in a complaint about the artist - it simply shouldn't have happened :-( 

 

Great news - enjoy the HH 

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

User
Posted 09 Jul 2016 at 12:07

Hi Kevin,

 

Absolutely delighted for you mate!

I'm sure you really going to enjoy this time off HT, and I hope it's a good long break too.

 

By the way, you fell into that trap....if you leave yourself wide open, Lyn will get ya!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

 

I'm sure she lies in wait, ready to pounce, and I for one have to double check every single sentence I post in case I spring the trap!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Edited by member 09 Jul 2016 at 12:08  | Reason: Not specified

B2PCa
User
Posted 09 Jul 2016 at 12:19

A sort of Yorkshire Praying Mantis :-)

Edited as I spelled Praying wrong and I didn't want jumped on

Edited by member 09 Jul 2016 at 12:45  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 09 Jul 2016 at 14:33
A hormone holiday - sounds like time in Paradise , says he who has another 13 months to go on HT !

Great news for you, enjoy it for as long as you can .

Regards ,

John

User
Posted 09 Jul 2016 at 19:33
Kev what can I say a fellow Southender you are blowing my socks off. Get in there my man fab fab fab. .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Jul 2016 at 07:08

Hi Kevin

It is great to hear that you are starting a hormone holiday. I am 2 years 4 months into my third hormone holiday and for me each time I start a hormone holiday some of the side effects subside but others, for example, loss of muscle strength and tiredness during physical activity are still lurking in the background and can be a problem. As you will know, everyone is different. and sometimes as you progress through a hormone holiday, or holidays, you are getting older and it can be difficult deciding which problems are residual from HT and which are normal age related problems.

I don’t know your oncologist’s view on a bio chemical relapses and at what level of PSA he would want you back on HT. My clinical oncologist is prepared to let my PSA rise to 10 before thinking about re starting HT and this has worked well for me over the years.

All the best!

Alan

User
Posted 10 Jul 2016 at 14:02
Originally Posted by: Online Community Member

A sort of Yorkshire Praying Mantis :-)

Edited as I spelled Praying wrong and I didn't want jumped on

I think you may have left yourself wide open anyway Chris with the Yorkshire reference lol

Great to hear about the hormone holiday Kev

Bri

User
Posted 19 Dec 2018 at 11:16

Morning all, 

thought as Christmas is almost upon us I'd update my progress.

I made a conscious decision a while back to stop living my life with the PCa monkey on my shoulder. I hit a bad patch of depression a while back which I decided that living with PCa had a large part. I couldn't get rid of the PCa but I could stop living with a constant reminder by reigning in my focus on forums and the like. Apologies to all. 

So, after being put on the happy pills and going on sick leave for a while changes at work offered an opportunity for retirement - snatched with both hands.

I'm still not on active treatment. Blood tests every six months, numbers continue to be on the floor. Testosterone is very low normal, not actively addressing this but there is definitely no 'kippling' on the menu ( I thank Allister & George for that superb phrase that can be used in polite company). This is still being put down to residual Zolodex effects, whatever. The boss and I can and are living with it.

I am currently having a gamut of tests relating to my backside (which I now officially disown) Since RT I've suffered from mucus events (now eased) and extreme urgency (countdown clock anyone?). So I've had cameras, balloons & digits inserted in an effort to understand the situation. I think it is nerve damage during RT but we will see.

By the way, if anyone says "you will need to take this picolax" RUN, run to the hills as if the devil is behind you. Which he will be if you take the picolax....

So, all's well at the moment, the clock is now showing 5 plus years and counting.

All the best to all of you and Merry Christmas.

Kevin

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User
Posted 14 Apr 2016 at 07:49
Chuffed you should be, well done!
User
Posted 14 Apr 2016 at 08:10

Hope you pass many more milestones. September will be my 9th DV, although I expect I will be needing some more treatment before very long in order to keep passing the milestones..

Barry
User
Posted 14 Apr 2016 at 08:11

Very good news, keep that going long time. Control at PSA cure level reads good to me.

Ray

User
Posted 14 Apr 2016 at 08:14

That's great news Kevin. Like wise I had good news a couple of weeks ago with no treatment needed except HT. How do you get on with it and manage the hot flushes etc?

Looking forward to some milestones now myself.

Steven

User
Posted 14 Apr 2016 at 08:54

Brilliant news - here's to the next milestone!

Flexi

User
Posted 14 Apr 2016 at 09:19

Hi Kevin
That's a really positive post for everyone thank you , and I hope I can follow suit in your always dignified manner. Best wishes and keep going
Chris

If life gives you lemons , then make lemonade

User
Posted 14 Apr 2016 at 09:37

Great news Kevin, really nice to hear good news all the best Andy

User
Posted 14 Apr 2016 at 09:45

Ah Chilled, what a perfect name it turns out you chose for yourself 😀 It doesn't seem 3 years since you joined - but time flies when we stop counting the minutes and before you know it, you will be marking 5 and maybe even 10 years like some of our other friends on here.

The bubbly was well-deserved, my friend.

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

User
Posted 14 Apr 2016 at 09:57

Originally Posted by: Online Community Member

That's great news Kevin. Like wise I had good news a couple of weeks ago with no treatment needed except HT. How do you get on with it and manage the hot flushes etc?

Looking forward to some milestones now myself.

Steven

 

Hi Steven,

the flushes, aches and pains, memory issues have all become my new normal as I call it.

I chose to live with these issues and not get ratty or upset about them.

My next door neighbour is going through the menopause and we discuss flushes when we meet up for a wine evening :)

I just try to laugh it all off as part of the new (improved?) me.

When balanced with the option, I consider it a reasonable trade off.

 

All the best

 

Kevin 

User
Posted 14 Apr 2016 at 13:08

Very good news!
I'm curious to know at what point did your onco give you a "....three year prognosis...."?
A three year prognosis on a T3aN0M0 sounds a bit off to me!
Nevertheless....Very good news!

User
Posted 14 Apr 2016 at 13:23
Great news. Congratulations .

John

User
Posted 14 Apr 2016 at 13:53

Thanks all,

I'm quite buoyed up at the moment, it's the bosses birthday today as well so I suspect some more plonk may be on the cards tonight too!

 

Originally Posted by: Online Community Member

Very good news!
I'm curious to know at what point did your onco give you a "....three year prognosis...."?
A three year prognosis on a T3aN0M0 sounds a bit off to me!
Nevertheless....Very good news!

Bill,

thanks. They hit me with the three years at the end of the diagnosis work.

Talking around I'm not the only one to be misdirected in that way.

I challenged them at a meeting about nine months ago, the prognosis stood but I was 'not following the curve'

Bottom line is I'm here and they were wrong :)

 

Kevin

User
Posted 14 Apr 2016 at 14:06

Fantastic news.  No wonder you're buoyed up!

User
Posted 14 Apr 2016 at 14:22

Originally Posted by: Online Community Member

Thanks all,

I'm quite buoyed up at the moment, it's the bosses birthday today as well so I suspect some more plonk may be on the cards tonight too!

 

Originally Posted by: Online Community Member

Very good news!
I'm curious to know at what point did your onco give you a "....three year prognosis...."?
A three year prognosis on a T3aN0M0 sounds a bit off to me!
Nevertheless....Very good news!

Bill,

thanks. They hit me with the three years at the end of the diagnosis work.

Talking around I'm not the only one to be misdirected in that way.

I challenged them at a meeting about nine months ago, the prognosis stood but I was 'not following the curve'

Bottom line is I'm here and they were wrong :)

 

Kevin

 

I see.....I think what your onco meant to say was...."All my patients have a three year life span...."  and  by not following the curve he meant "..You are making me look bad and incompetent...please go away!"

I will make sure that on my travels I bypass Westcliff-on-Sea.....just in case I have a car accident and have to go to the hospital.

User
Posted 14 Apr 2016 at 14:50

Originally Posted by: Online Community Member

 

I see.....I think what your onco meant to say was...."All my patients have a three year life span...."  and  by not following the curve he meant "..You are making me look bad and incompetent...please go away!"

 

 

LOL.

In fairness the prognosis came while I was in the care of the urology department.

(works in a set of portacabins, not the greatest of morale I'd say)

The onco that I'm under in the Oncology department is a spot on dude.

I'm happy with the care I'm getting in Oncology.

.... but I take your point. :)

 

Kevin

User
Posted 14 Apr 2016 at 15:32

As far as I remember Chilled, I thought it was the fact that your PSA was so high that made them doubt the T3. The uro believed that despite the scans you must have some micromets - cheerful souls, some of them. Whatever it was, the care you have had from the trial team has obviously blown away those little PSA-generators!

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

User
Posted 14 Apr 2016 at 16:07
Originally Posted by: Online Community Member

As far as I remember Chilled, I thought it was the fact that your PSA was so high that made them doubt the T3. The uro believed that despite the scans you must have some micromets - cheerful souls, some of them. Whatever it was, the care you have had from the trial team has obviously blown away those little PSA-generators!

Lyn, you are spot on.

There is a view that says the fissure seen on the MRI indicated that there is a risk of localised spread into the abdominal area. Even if it can't be seen.

I did broach taking a HT holiday like many others on here, but it was not recommended for me as the original PSA was so high.

If I really push it my oncologist will allow it even though he is against it.

However I've decided not to interfere with a winning formula, if the big man is not happy that's good enough for me.

All the best

Kevin

User
Posted 14 Apr 2016 at 16:35

Hi Kevin
I'm well impressed with your progress and hopeful I can follow you as I tread a similar path.

I noticed you too had a high psa and went onto stampede on abiraterone but then you had RT when your psa was about .04 I think. I'm on stampede with HT and enzalutamide (I dropped the ab I after 3 months) and psa now after 15 months is bumbling along at .05.
I wondered if you could share with me the reason you decided on RT when the psa was so low.

Like you I'm also suffering some upper arm pain which will be examined at next on one meeting. I also had knee pains and had them X Ray'd - nothing found and now eased.

Great to read your posts

Paul

User
Posted 14 Apr 2016 at 16:44

Great news Chilled, celebrate good news and "chill" have some more plonk stay positive and look to the future.

Cheers long may it continue, regards Chris/Woody

Life seems different upside down, take another viewpoint

 
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