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15 years (nearly) completed

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User
Posted 12 Sep 2017 at 15:02

Aged 58 at diagnosis ar G8. The rest is in my profile. I'm very much aware many have not done so well. One can only hope as new treatments come on line that 13 years will be more common. 

Good luck to all

Ray

Edited by member 01 Jul 2019 at 16:55  | Reason: Not specified

User
Posted 12 Sep 2017 at 15:02

Aged 58 at diagnosis ar G8. The rest is in my profile. I'm very much aware many have not done so well. One can only hope as new treatments come on line that 13 years will be more common. 

Good luck to all

Ray

Edited by member 01 Jul 2019 at 16:55  | Reason: Not specified

User
Posted 12 Feb 2019 at 15:24
Difficult to post when other folks are going through tough times. However on balance I feel my results might give hope to some.

My profile formatting seems to have gone astray - oh well never mind.

Jan 2019 PSA 0.726

Next meet July.

Ray

User
Posted 13 Sep 2017 at 10:44

well done Ray, tony is now in his 11th year and gleason 9. he was diagnosed at 61. looking forward to his 13th year anniversary and your 15th year one. x

regards barbara

User
Posted 14 Sep 2017 at 08:39

Thanks both.

Barbara, Tony is doing very well. You will overcome the recent scare (from your profile) -keep fighting.

Ray

User
Posted 02 Jul 2018 at 17:32
Just updating PSA to show after RT it can move around somewhat. Now at 1.57. Test again in 3 and 6 months - see consultant in 6 months. Hopefully without tempting fate Sep will be completed 14 years from diagnosis and no cancer treatment for past 10 years.

All keep as well as you can

Ray

User
Posted 09 Jun 2019 at 02:00

Hi Andy & Malcolm,

When I ended my original Zoladex treatment in August 2016 (last injection twelve weeks prior to that), I was concerned that I still didn't feel anything had changed by the following May (2017). 

My GP sent me for a testosterone test and the results confirmed that my level was still at 0.3.  The normal level is in the range of 7 to 31 so it was clear that things hadn't changed from when I was on treatment.  A couple of months later I found that things seemed to returned to normal and I felt so much better.  It had taken nearly a year to get the drug out of my system.  I felt so much better in every way.  My libido returned and I was able to enjoy sex again. 

Unfortunately, in my case, this was only to last for nine months as I had to restart Zoladex again in March last year due to my PSA rising again (doubling every 12 weeks). 

So for me, HT will now be for life, as even with the treatment, my PSA is still rising, though at a slower rate (doubling every 8 months).

Steve 

Edited by member 09 Jun 2019 at 02:36  | Reason: Not specified

User
Posted 10 Jun 2019 at 11:16
Hi

In my case if you would have asked 12 months after HT ends my reply would have been something like pretty much back on track other than ED and decreased level of hot flushes. However although ED remained as each year passed fitness improved, hot flushes decreased further and a sense of just feeling better. That theme continued for a good 6 years. At present ED remains, hot flushes continue at a low level and far less frequent. Taking increased age into account I'm happy with my level of fitness. I still feel it was worth sticking with HT even when the planned 36 months turned into 47.

Ray

Show Most Thanked Posts
User
Posted 12 Sep 2017 at 19:13

Brilliant Ray, keep on keeping well x

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

User
Posted 12 Sep 2017 at 20:03

Pleased to hear the news ,

I hope you have many more 

Just keep a close watch on your PSA don't let it drift , I Did

Barry

Edited by member 12 Sep 2017 at 20:05  | Reason: Not specified

User
Posted 12 Sep 2017 at 21:41

Good result so far - here's to many more years. It's 10 years this month since my diagnosis but I am aiming for more years even if it means further treatment.

Barry
User
Posted 12 Sep 2017 at 23:25

Keep plodding on Ray.  http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

 

Roger
User
Posted 13 Sep 2017 at 07:30
R

Great news and long may it continue.

Thanks Chris

User
Posted 13 Sep 2017 at 09:14

Thanks to all for the comments and good luck on your own life journey.

Ray

User
Posted 13 Sep 2017 at 10:44

well done Ray, tony is now in his 11th year and gleason 9. he was diagnosed at 61. looking forward to his 13th year anniversary and your 15th year one. x

regards barbara

User
Posted 13 Sep 2017 at 23:56

Excellent results Ray.

Keep going.

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 Sep 2017 at 08:39

Thanks both.

Barbara, Tony is doing very well. You will overcome the recent scare (from your profile) -keep fighting.

Ray

User
Posted 14 Sep 2017 at 10:24

Well done Ray, you have always been a great help and inspiration to me.

:)

Dave

User
Posted 14 Sep 2017 at 13:08

Brilliant Ray...plenty more years to come

Bri

User
Posted 14 Sep 2017 at 22:53
I think another one for the hall of fame ! Fantastic keep on keeping on Ray.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Sep 2017 at 23:03
Thank you, Ray, and the other 'long timers' - you give me hope and I am grateful for that.

Ulsterman

User
Posted 15 Sep 2017 at 03:53
Well done, Ray.

13 is certainly a lucky number for you.

All the Best,

Steve

User
Posted 15 Sep 2017 at 09:19

Thanks all for the kind words. I've always been inspired by those fighting against whatever thier own journey throws at them so thank you all for helping me.

Ray

User
Posted 23 Oct 2017 at 20:56
Well done Ray just keep it going, I am a month short of 14 yrs and still going strong.
User
Posted 23 Oct 2017 at 21:05

Brilliant Ray.  Good to see positive news.   

My brother has just taken 'RT' route,  so your PSA values in your profile are very useful.

May I ask:

I assume you have a PSA test  this month ?  (ie do you 'call them in' or wait for appointments )

 

All the very best

Gordon

 

User
Posted 24 Oct 2017 at 08:50
Congratulations ray fantastic news, my partner at the start of this journey, 6weeks into Ht awaiting Hd brachy/Rt so you are realy an inspiration that longevity does happen, just reading your news has given me such hope, (and possibly a little tear in my eyes), thank you to all your advice and contributions towards helping others on their journeys ray, your inspirational, keep on keeping well.take care..jo.xx
User
Posted 02 Jul 2018 at 17:32
Just updating PSA to show after RT it can move around somewhat. Now at 1.57. Test again in 3 and 6 months - see consultant in 6 months. Hopefully without tempting fate Sep will be completed 14 years from diagnosis and no cancer treatment for past 10 years.

All keep as well as you can

Ray

User
Posted 02 Jul 2018 at 19:52
Well done Ray 👍👍

Bri

User
Posted 02 Jul 2018 at 22:00
Well done Ray

Tony is on his 12th year now his psa is 0.7 but he is on hormones now but he is still well and going to golf and the gym.

onwards and upwards and looking forwards to your 14th anniversary.

regards barbara

User
Posted 02 Jul 2018 at 22:04
Nice one Ray. Look forward to hearing a similar report next year.

Roger
User
Posted 02 Jul 2018 at 23:03

Very well Ray. Wish you continuous luck and good health.

I started my journey a few months ago only.  

 

User
Posted 02 Jul 2018 at 23:20
Excellent news for you, and gives hope for others Ray.

atb to you and to anyone else dealing.

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 03 Jul 2018 at 08:40
Hi Ray

Very pleased to read that you will end year 14 shortly. Keep on doing whatever it is you are doing!

Alan

User
Posted 29 Oct 2018 at 18:36
Already slim but In 6 months weight down by 5%. GP informed PSA good as Oct 1st PSA 0.634 (Jan 2011 0.6 - Apr 2017 1.96 ). PSA certainly moves around abit :-)

I put weight loss down to change of pills to Ranitidine 6 months ago. GP not convinced so blood tests but stopped Ranitidine and back on Omerprazole for a month but doubled dose to 40mg.

Anyone else lost weight on Ranitidine?

Ray

User
Posted 29 Oct 2018 at 19:11
You have not shown your PSA tests for 2018 under your Bio Ray so ask you do this please as it shows how levels can fluctuate and an indication of how you are doing.

Is weight loss a problem and drug induced or are you doing any more physically demanding activities that could in part be responsible?

Barry
User
Posted 29 Oct 2018 at 20:22
Barry apologies, bio updated. My weight for years has been within a couple of pounds. Activities slightly less. This past month reduced long walks and increased protein rich foods rather than quick fix sugar to put weight on but no joy. GP advised get walking again as that's not the cause.

Simple logic to me is change pills lose weight then it's the pills. But GP not convinced expecially as food still striking in throat and permanent frog in throat two years on - might have to go back to hospital. Hope not.

Thanks

Ray

User
Posted 12 Feb 2019 at 15:24
Difficult to post when other folks are going through tough times. However on balance I feel my results might give hope to some.

My profile formatting seems to have gone astray - oh well never mind.

Jan 2019 PSA 0.726

Next meet July.

Ray

User
Posted 12 Feb 2019 at 16:15

Looking good Ray. smile

Roger
User
Posted 12 Feb 2019 at 16:20
As been said recently we need good and bad to try and maintain a realistic ballance.

All the best for the next one.

Cheers

Bill

User
Posted 12 Feb 2019 at 16:27
Brilliant Ray.

Bri

User
Posted 12 Feb 2019 at 17:31
Super news xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Feb 2019 at 17:48

Great news Ray, keep it up. 

ps my profile has done the same when i updated it. 

 

Roy

User
Posted 12 Feb 2019 at 17:55

Great news Ray.

Ido4

User
Posted 12 Feb 2019 at 21:13
Great news Ray

regards Barbara x

User
Posted 12 Feb 2019 at 23:12
Great news Ray. Thanks for sharing

Take care.

Dave C

User
Posted 13 Feb 2019 at 07:57

Well done Ray 
Regards Profile they semmm to have squashed mine up as well

User
Posted 13 Feb 2019 at 10:20
I had to go back into my profile and re-set the whole lot - I think they stole all the spaces when they were trying to solve the other problem :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Feb 2019 at 00:16
Good to hear you are still doing well Ray, very encouraging for others too.

Prompted by what said about Bio - now finds it's consolidated into one long paragraph which makes for hard reading and one short sentence. I suppose I will have to precis and rewrite it but have too much going on to do so at present.

Barry
User
Posted 14 Feb 2019 at 09:01
Thanks to all for the comments, much appreciated.

As regards profile if I try to edit via mobile there is just a postage stamp size screen.

Ray

User
Posted 08 Jun 2019 at 06:27

Ray,

Was browsing and came across this thread.

I notice you were on Zoladex for nearly 4 years. It would be interesting (to me at least) to know how long it took to recover from hormone therapy side effects, and if you think you made a full recovery after such a time on HT. I guess that's one of my concerns.

Cheers.

User
Posted 08 Jun 2019 at 17:26

That’s what I have been trying to find out had a couple of replies look at my question , my last injection `wears off ‘ next week , womder if side effects wear off in say 3 months??? 

User
Posted 09 Jun 2019 at 02:00

Hi Andy & Malcolm,

When I ended my original Zoladex treatment in August 2016 (last injection twelve weeks prior to that), I was concerned that I still didn't feel anything had changed by the following May (2017). 

My GP sent me for a testosterone test and the results confirmed that my level was still at 0.3.  The normal level is in the range of 7 to 31 so it was clear that things hadn't changed from when I was on treatment.  A couple of months later I found that things seemed to returned to normal and I felt so much better.  It had taken nearly a year to get the drug out of my system.  I felt so much better in every way.  My libido returned and I was able to enjoy sex again. 

Unfortunately, in my case, this was only to last for nine months as I had to restart Zoladex again in March last year due to my PSA rising again (doubling every 12 weeks). 

So for me, HT will now be for life, as even with the treatment, my PSA is still rising, though at a slower rate (doubling every 8 months).

Steve 

Edited by member 09 Jun 2019 at 02:36  | Reason: Not specified

User
Posted 10 Jun 2019 at 11:16
Hi

In my case if you would have asked 12 months after HT ends my reply would have been something like pretty much back on track other than ED and decreased level of hot flushes. However although ED remained as each year passed fitness improved, hot flushes decreased further and a sense of just feeling better. That theme continued for a good 6 years. At present ED remains, hot flushes continue at a low level and far less frequent. Taking increased age into account I'm happy with my level of fitness. I still feel it was worth sticking with HT even when the planned 36 months turned into 47.

Ray

User
Posted 01 Jul 2019 at 12:07
Latest PSA hardly moved at 0.743. Don't wish to temp fate but come Sep that will be 15 yrs since diagnosis.

As regards waterworks I got on Vesicare via back door rather than consultant as I knew con's wouldn't agree. I've recently had problem starting to pee and eye pressure rising. As soon as I said that "off them now" See con's in 3 months re different pills or whatever. I'm down to sse opto consultant Friday.

Good luck to all.

Ray

User
Posted 01 Jul 2019 at 12:33
Hi Ray

good news on the PSA and hope you get on ok on Friday with your eyes. all the best

Barbara x

 
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