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Intermittent Hormone Therapy: 9+ years - Treatment

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User

Posted 24 Sep 2014 at 18:47

Well, today, 24th Sept, marks 9yrs 6 months since my very first PSA test in 2005.

That came back at 182 and then I was in the whirlwind of scans and treatments.

My prognosis was very bad, but here I still am.

I firmly believe that intermittent hormone therapy has been my saviour.

That and the fact that I was blessed to have no lymph or bone mets despite the T4 tumour.

Unbelievably, every scan since 2005 has revealed still no spread there.

I'm losing count of how many times I've been on and off hormone therapy, but I do know I'm coming up to a year now without Zoladex.

Current PSA is 0.429 and testosterone has risen (very slowly this time) to 3.3

I will now watch PSA monthly and if it heads for 10.0 I will dash back to HT.

All those years ago I never imagined I'd be still here today.

So guys, take heart, stay positive, and most important of all, stay very pro-active in your treatment plans.

George

User

Posted 04 Oct 2014 at 14:08

George, it isn't your fault .... It's because you are a man x

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

User

Posted 24 Sep 2014 at 18:47

Well, today, 24th Sept, marks 9yrs 6 months since my very first PSA test in 2005.

That came back at 182 and then I was in the whirlwind of scans and treatments.

My prognosis was very bad, but here I still am.

I firmly believe that intermittent hormone therapy has been my saviour.

That and the fact that I was blessed to have no lymph or bone mets despite the T4 tumour.

Unbelievably, every scan since 2005 has revealed still no spread there.

I'm losing count of how many times I've been on and off hormone therapy, but I do know I'm coming up to a year now without Zoladex.

Current PSA is 0.429 and testosterone has risen (very slowly this time) to 3.3

I will now watch PSA monthly and if it heads for 10.0 I will dash back to HT.

All those years ago I never imagined I'd be still here today.

So guys, take heart, stay positive, and most important of all, stay very pro-active in your treatment plans.

George

User

Posted 03 Oct 2014 at 09:33

Hi George,

Thanks to you all, much appreciated. Looking forward to us both achieving 15 years.

To those who have lost loved ones and at present at the sharp end that might read greedy. However I balance that by recalling theme of comments from consultant when I asked about the value hope 'it will not cure cancer but there is not a drug on the market that buys more time than being Positive and having Hope'.

Thus as George said I encourage all those who done well to post as that will give more hope to others and buy them time

Good luck to all

Ray

User

Posted 01 Oct 2014 at 18:57

Well done George

I hope all the learning and knowledge others are gaining from the training can be shared on here at some point :)

Bri

User

Posted 02 Oct 2014 at 14:10

Ray,

It just struck me (ouch!), that you must have 'celebrated' your 10 year milestone just recently.

Belated congratulations from us all, and it's great to see how low your PSA has remained over all those years.

That's a very impressive set of figures!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

All the very best,

George

PS. I have now just found your post from Sept 24th...you and I started this fight exactly 6 months apart.

And I know what you meant there about feeling hesitant to post good news after all the sadness.

But I think it needs to be done to encourage others, and to give hope.

Barry (Topgun) gave me a right rollocking when I was unsure about posting my 9th aniversary on March 24th this yearhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Edited by member 02 Oct 2014 at 14:18 | Reason: Not specified

User

Posted 04 Oct 2014 at 09:45

Hi George

Yes I had what turned out to be a rare privilege of meeting Old Al. That was after a few emails so I didn’t push my luck in asking for a photo, wished I had now. A very long shot here, my sister lives not far from where Old Al lived at one time so I’ve asked her if she knows a contact.

Ray

User

Posted 06 Oct 2014 at 16:29

Hi George - quick update whilst I have mobile signal. Sis located Alan's father in law. Alan's wife due to visit him soon so Sis left her contact details with him

Ray

User

Posted 18 Oct 2014 at 17:03

Hi George

Unless you have been sent photo it seems family declined to send one, can only respect their wishes.

Hi Barry - thank you

Ray

User

Posted 15 Jun 2019 at 14:36

Hi Paul,

I managed to get monthly tests because I have 3 sources: My oncologist, my uro-oncology specialist nurse, and my GP.

This was possible because I'm a patient of two hospitals (one where I was diagnosed, plus my main cancer treatment hospital, and of course my GP practice).

The Uro nurse sends me a blood request form every 3 months and we have a telephone review after each result. That's four tests

My oncologist sees me every 4 months, so that's another 3 blood tests.

And my friendly GP is happy to refer me for a PSA whenever I ask (in the right time frame).

Actually, I was so keen to see a monthly result for years, but these days I am happy with one every 6 weeks.

Honestly, I think three months is too long to wait for PSA tests. A lot can happen in that time.

That's just my own personal opinion, and I know a lot of our guys would baulk at the idea of monthly or 6-weekly testing.

I had a Zoladex jab a month ago. That will stay in my body for 12 weeks and then I'm stopping treatment.

My PSA has been constantly low for a while now, so it's time to take yet another hormone holiday.

Once off treatment I will be watching PSA levels like a hawk. No safety net then, is there? And my PSA WILL rise.

Hoping to get at least 18 months of increased energy and a return of libido before I have to dash back onto hormone therapy.

Wishing you all the very best,

George

User

Posted 15 Jun 2019 at 17:15

Hi George!!!!

Lovely to see you back on the board and in relatively fine fettle!

I never thought that I would still be posting 10 years after my diagnosis, especially after seeing so many brave lads who comforted me in my early days when I was totally petrified and ill informed pass on.

Old Al, Martini, Andy Ripley,Alathays,Spurspark, Topgun and all the other amazing guys , who, despite their suffering gave me strength and a reason to carry on, and became my heroes.I am so pleased that you,who was among my PCa Band of Brothers is still alive and in good form

They were true heroes, unlike some of the wasters on the Honours List.

Their quiet courage will never be featured on the front pages of the tabloids unlike some of the undeserving plastic posers deified by social media who , even when they get toothache or similar minor ailments attract mass public sympathy from the snowflake segment of our BGT indoctrinated society .They would have hated that. I remember in particular when Andy Ripley in his last moments dictated to his daughter who was posting on his behalf ‘Tee,hee I have gone blind’.........

Can’t say no more I am welling up.

Once again Georgie , lovely to hear from you again

kind regards

Roly

Edited by member 15 Jun 2019 at 23:35 | Reason: Not specified

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User

Posted 24 Sep 2014 at 19:36

George,

Great to hear the good news!

Flexi

User

Posted 24 Sep 2014 at 20:22

Well done George
Your post is very encouraging for me since I also started in 2009 with a PSA of well over 150 but with no symptoms at all. I had a rollercoaster ride resisting many treatments but eventually succumbing to hormone therapy which was horrible to me and my wife. In April this year I finally had cryotherapy and now feel fine after stopping the hormone therapy. Only problem now is very low testosterone but PSA is at O.3. Can anyone tell me how to increase the testosterone level other than waiting until all of the hormone therapy has washed out.
I agree entirely with you George that one must stay positive and be VERY proactive about treatments. There are lots of new possibilities coming along I believe.

Terry

User

Posted 24 Sep 2014 at 20:27

Well done George, here's to your next 9 years.

User

Posted 24 Sep 2014 at 21:03

Hi George,

Much needed good news and encouragement for those newly diagnosed, we all need a success story especially today. Your story will give hope to so many.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Oct 2014 at 10:24

Hi George

I was sceptical about IHT but just read through this week’s on-line course (think you may be on it) – I could well be changing my mind. Although I still feel its one of those treatment plans that work for some but for others maybe not

Well done and keep going

Ray

User

Posted 01 Oct 2014 at 10:33

Good News George! Less than 0.5 after 9.5 years is just unbelievable! You are obviously doing all the right things... almost!

Cheers,

Peter

User

Posted 01 Oct 2014 at 11:21

George,
good stuff matey!
Just get that testosterone up...

Ray,
great minds and all that, I'm doing the course and that stood out for me as well. I am wondering as HT ebbs so slowly whether the cells have time to adapt to the reduction.
I'd guess not using George as a guinea pig :)

cheers

Kevin

User

Posted 01 Oct 2014 at 13:19

Thanks for your kind words my friends.

Since I posted that, I've reconsidered my timetable for taking action again.

Instead of waiting for PSA to rise to 10.0 I'll make my cut off point 5.0.
I will watch my monthly figures and once PSA approaches that figure I'll return to treatment.

I hadn't fully thought through the possible dangers of allowing a high PSA at this period in my battle.

A very wise old friend on here pointed out that after such a long time, my body may not be up to fighting off sudden cancer cell activity and a spread to bones/lymph nodes. In other words It could sneak up on me (Thank you Rob!),

As ever, I stand by my belief that monthly PSA tests are vital the longer you have this disease,

And I have to agree with Ray and Kevin. I also think that we're all unique in our reaction to the illness and available treatments.
You only have to look over the histories of so many members here who have had hugely different reactions and outcomes.

All the very best,

George

User

Posted 01 Oct 2014 at 13:49

Hi Kevin,

The old Phoenix site had/have graphics showing how a few androgen independent cells would eventually increase. Of course in those days little more could be done if they did.

Hence to me the dilemma: if you had those cells to start with I can now see how IHT could delay their proliferation. However if you didn’t have any or perhaps still at the development stage when they could be killed off by HT then perhaps hitting it hard could be more effective. I guess the next step is this DNA profile to see just what type(s) of PCa cells you have and from that the appropriate drug and time periods given.

Good luck and stay as good as you can

Ray

Edited by member 01 Oct 2014 at 13:50 | Reason: Not specified

User

Posted 01 Oct 2014 at 18:57

Well done George

I hope all the learning and knowledge others are gaining from the training can be shared on here at some point :)

Bri

User

Posted 02 Oct 2014 at 14:10

Ray,

It just struck me (ouch!), that you must have 'celebrated' your 10 year milestone just recently.

Belated congratulations from us all, and it's great to see how low your PSA has remained over all those years.

That's a very impressive set of figures!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

All the very best,

George

PS. I have now just found your post from Sept 24th...you and I started this fight exactly 6 months apart.

And I know what you meant there about feeling hesitant to post good news after all the sadness.

But I think it needs to be done to encourage others, and to give hope.

Barry (Topgun) gave me a right rollocking when I was unsure about posting my 9th aniversary on March 24th this yearhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Edited by member 02 Oct 2014 at 14:18 | Reason: Not specified

User

Posted 03 Oct 2014 at 09:33

Hi George,

Thanks to you all, much appreciated. Looking forward to us both achieving 15 years.

To those who have lost loved ones and at present at the sharp end that might read greedy. However I balance that by recalling theme of comments from consultant when I asked about the value hope 'it will not cure cancer but there is not a drug on the market that buys more time than being Positive and having Hope'.

Thus as George said I encourage all those who done well to post as that will give more hope to others and buy them time

Good luck to all

Ray

User

Posted 03 Oct 2014 at 14:17

Hi Ray,

This is a bit 'off topic' but as I think you're the only one here who actually met 'Old Al' (Alan Charlton), by any chance do you have a photo of him?
i ask because we have memorial album on B2PCa, and when we remembered his passing the other day (Sept 30th 2012), I realised he's one of the very few who we don't have a photo of.

It would be great news if you have one.

For any newcomers here, Old Al was a legend on the forums over the best part of ten years.

Just click on 'Members' (at the top of this page), and search for OLD AL

George

User

Posted 04 Oct 2014 at 09:45

Hi George

Yes I had what turned out to be a rare privilege of meeting Old Al. That was after a few emails so I didn’t push my luck in asking for a photo, wished I had now. A very long shot here, my sister lives not far from where Old Al lived at one time so I’ve asked her if she knows a contact.

Ray

User

Posted 04 Oct 2014 at 09:52

Thanks Ray,

A long shot maybe, but you never know. It might just work.
I remember he once had a very small pic of himself as an avatar for some site, but I couldn't enlarge it no matter how I tried.
Thanks for your reply Ray,

Gerorge

User

Posted 04 Oct 2014 at 11:26

George, if I am stating the obvious I apologise but have you tried googling him? I think he was once interviewed for an article so they might have taken a photo.

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

User

Posted 04 Oct 2014 at 13:05

Hi Lyn,

No, you're not stating the obvious. I never seem to think about the obvious, duh!

I've now done as you suggested, no luck so far apart from an obituary notice and his links to YANA,

I'll keep trying, and there may be some luck from Ray's efforts too.

George

User

Posted 04 Oct 2014 at 14:08

George, it isn't your fault .... It's because you are a man x

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

User

Posted 06 Oct 2014 at 16:29

Hi George - quick update whilst I have mobile signal. Sis located Alan's father in law. Alan's wife due to visit him soon so Sis left her contact details with him

Ray

User

Posted 06 Oct 2014 at 16:53

Thanks Ray,

That sounds very promising.

Thinking about Al reminded me of one of my first conversations with with him here back in 2005.
I asked him why the heck he was 'Old Al' when he and I were the same age (we were 54 at the time).

It seems a lifetime ago now.

All the best,

George

User

Posted 07 Oct 2014 at 20:43

Congrats to you Ray

George 5 is a much better figure

Barry

User

Posted 18 Oct 2014 at 17:03

Hi George

Unless you have been sent photo it seems family declined to send one, can only respect their wishes.

Hi Barry - thank you

Ray

User

Posted 18 Oct 2014 at 17:08

Thanks for trying Ray. Much appreciated.

I'll let you know if one does arrive.

George

User

Posted 13 Jun 2019 at 23:18

Hi George,

How did you mange to get monthly PSA tests. I've been asking for these but keep getting refused?

Paul

User

Posted 15 Jun 2019 at 14:36

Hi Paul,

I managed to get monthly tests because I have 3 sources: My oncologist, my uro-oncology specialist nurse, and my GP.

This was possible because I'm a patient of two hospitals (one where I was diagnosed, plus my main cancer treatment hospital, and of course my GP practice).

The Uro nurse sends me a blood request form every 3 months and we have a telephone review after each result. That's four tests

My oncologist sees me every 4 months, so that's another 3 blood tests.

And my friendly GP is happy to refer me for a PSA whenever I ask (in the right time frame).

Actually, I was so keen to see a monthly result for years, but these days I am happy with one every 6 weeks.

Honestly, I think three months is too long to wait for PSA tests. A lot can happen in that time.

That's just my own personal opinion, and I know a lot of our guys would baulk at the idea of monthly or 6-weekly testing.

I had a Zoladex jab a month ago. That will stay in my body for 12 weeks and then I'm stopping treatment.

My PSA has been constantly low for a while now, so it's time to take yet another hormone holiday.

Once off treatment I will be watching PSA levels like a hawk. No safety net then, is there? And my PSA WILL rise.

Hoping to get at least 18 months of increased energy and a return of libido before I have to dash back onto hormone therapy.

Wishing you all the very best,

George

User

Posted 15 Jun 2019 at 17:15

Hi George!!!!

Lovely to see you back on the board and in relatively fine fettle!

I never thought that I would still be posting 10 years after my diagnosis, especially after seeing so many brave lads who comforted me in my early days when I was totally petrified and ill informed pass on.

Old Al, Martini, Andy Ripley,Alathays,Spurspark, Topgun and all the other amazing guys , who, despite their suffering gave me strength and a reason to carry on, and became my heroes.I am so pleased that you,who was among my PCa Band of Brothers is still alive and in good form

They were true heroes, unlike some of the wasters on the Honours List.

Their quiet courage will never be featured on the front pages of the tabloids unlike some of the undeserving plastic posers deified by social media who , even when they get toothache or similar minor ailments attract mass public sympathy from the snowflake segment of our BGT indoctrinated society .They would have hated that. I remember in particular when Andy Ripley in his last moments dictated to his daughter who was posting on his behalf ‘Tee,hee I have gone blind’.........

Can’t say no more I am welling up.

Once again Georgie , lovely to hear from you again

kind regards

Roly

Edited by member 15 Jun 2019 at 23:35 | Reason: Not specified

User

Posted 16 Jun 2019 at 09:00

Hi George

Hope you get as long as possible off the hormones and pleased you are ok, Tony has passed that stage now after 13 years recently finished chemo and now on abiraterone for as long as that works plus the hormones as well. Rolly your post brought tears to my eyes as well remembering all those wonderful men, Andy was a really great help when Tony was first diagnosed.

regards Barbara x

User

Posted 16 Jun 2019 at 10:12

George

I think of you often and am so pleased to see that you are still on the intermittent pathway. You absolute legend! Roly’s Post made me sniffle too, so many names from the days of the very friendly forum, all gone but never forgotten. Such wonderful men, inspirational one and all. John is on Enzalutimde now but needs patches for pain and is failing really. We’ve just been on holiday in the UK but he found it very trying, I think it will be our last. 8.5 years for us with a Gleason 10, it’s been a heck of a run.

You are an inspiration to so many George, intermittent is a great way to go for the brave and controlled.

lots of love

Devonmaid xxxxx

User

Posted 16 Jun 2019 at 10:42

Thank you George that's really helpful. Unfortunately my GP is not being so helpful. I'd like to try IHT but as you say I believe 3mths to be too long for active monitoring particularly as your PSA could give a one-off deceptively high (or low) reading on occasion.

User

Posted 16 Jun 2019 at 12:38

Droop, with a T3 you are presumably on a curative pathway (IHT is not relevant to men on curative treatment) and having only been on HT for 6 months, it would be too soon for IHT anyway.

Are you having radiotherapy as well as HT? Have you been diagnosed as incurable? What is your current PSA reading? We need more info to be able to help you.

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

User

Posted 16 Jun 2019 at 12:39

George, sorry we won't see you at Leicester - stay well lovely man and give my love to your lovely ladies xxx

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

User

Posted 16 Jun 2019 at 14:28

Hi George

Kind of makes sense what you're doing, staying on HT for a finite period then having a break before your body builds an immunity to the treatment.

You've had a great run, long may it continue.

John

User

Posted 16 Jun 2019 at 14:46

Good to see you posting George and long may you outrun PCa. Will miss not seeing you again at Leicester which for Barbara and me had become an annual event where we much appreciated all the arrangements you made to make it a success.

Barry

User

Posted 16 Jun 2019 at 17:39

Dare we hope? We dare

Can we hope? We can

Should we hope? We must

We must, because otherwise is to waste the most precious of gifts given by God to all of us. So when we die it will be easy and our hearts will not be broken

Andy Ripley

1st June 2007

Athlone Friary

User

Posted 16 Jun 2019 at 22:22

For newer members that have never read Andy's thread, here it is:-

https://community.prostatecanceruk.org/posts/t2678-Just-another-story

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

User

Posted 16 Jun 2019 at 23:06

Lyn

Thanks for posting. Truly heroic story, why wasn't he knighted?

Also read Old Al's profile, what a trooper he was swimming half a mile a day with his PSA off the scale.

Very humbling reading.

John

User

Posted 16 Jun 2019 at 23:16

Andy died a few days after his OBE was announced.

Old Al was an amazing man - swimming got him out of a wheelchair and mobile again. The tragic thing was that Old Al wasn't old at all.

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

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