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Intermittent Hormone Therapy: 9+ years - Treatment

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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

B2PCa
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

B2PCa
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

B2PCa
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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