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Living well with prostate cancer

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User
Posted 11 Jul 2024 at 12:37

Well, it’s nine years since David was diagnosed with Gleason 9 Tb3 and he got his PSA results this morning,and he’s happy <0.1 

He had HDR, three years of HT & 6 weeks of RT, until his PSA began to rise and he was diagnosed with Lymphnode involvement three years ago, stage four cancer. 

We were gutted, he’d got his libido back, was enjoying life and this miserable disease put the mockers on that. 
Having said that we can talk, cuddle and deal with what we have to, time to jettison the sex toys eh. 

He hasn’t just taken  the traditional route, we’ve taken supplements, and alternative and mainstream medication.He is on lifelong Prostap along with off label medication. 

Yes, he gets tired, yes, he gets aches & pains,he’s 74 now, we still manage our acre of garden, grow our food,chop wood and live ‘The GoodLife’ He has no libido, which has its downside, as we enjoyed a good sexlife  before all this. 

So, its hard and we miss the physical stuff, but, we have learned to manage what we have, enjoy life, and wring the last drop of fun we can each day.

He’s a happy lad, birthday this week, England in the finals, I think it’s called football, and <0.1 PSA.

I hate this disease with a passion, we love life and have plenty of living to do, enjoy each day the best you can boys. 

Leila. 

 

 

User
Posted 11 Jul 2024 at 12:37

Well, it’s nine years since David was diagnosed with Gleason 9 Tb3 and he got his PSA results this morning,and he’s happy <0.1 

He had HDR, three years of HT & 6 weeks of RT, until his PSA began to rise and he was diagnosed with Lymphnode involvement three years ago, stage four cancer. 

We were gutted, he’d got his libido back, was enjoying life and this miserable disease put the mockers on that. 
Having said that we can talk, cuddle and deal with what we have to, time to jettison the sex toys eh. 

He hasn’t just taken  the traditional route, we’ve taken supplements, and alternative and mainstream medication.He is on lifelong Prostap along with off label medication. 

Yes, he gets tired, yes, he gets aches & pains,he’s 74 now, we still manage our acre of garden, grow our food,chop wood and live ‘The GoodLife’ He has no libido, which has its downside, as we enjoyed a good sexlife  before all this. 

So, its hard and we miss the physical stuff, but, we have learned to manage what we have, enjoy life, and wring the last drop of fun we can each day.

He’s a happy lad, birthday this week, England in the finals, I think it’s called football, and <0.1 PSA.

I hate this disease with a passion, we love life and have plenty of living to do, enjoy each day the best you can boys. 

Leila. 

 

 

User
Posted 12 Jul 2024 at 10:44

There is intermittent hormone therapy, which is available to some men on lifelong hormone therapy.

To do this, the hormone therapy has to get your PSA down to a low level (probably <1, and maybe even <0.1), and the rate of rise of PSA when not on hormone therapy has to be slow. When you come off the hormone therapy for a hormone therapy holiday, your oncologist will specify a level it reaches where you have to restart the hormone therapy, which is typically something like 5, 10, 20.

For men who can do intermittent hormone therapy, they usually spend longer off hormone therapy than on it. It does not seem to significantly reduce the time to become castrate resistant, but can give significant improved QoL for periods.

Intermittent hormone therapy is not used in the case of curative treatments with time-limited hormone therapy.

There is also a treatment called Bilateral Androgen Therapy (BAT). This is where hormone therapy is switched off and on over a much shorter period. Indeed, the period is too short for natural recovery from hormone therapy to work, so you stay on the hormone therapy all the time, but have Testosterone injections during the holiday. This also gives periods of improved QoL, but I get the impression that is at the cost of shorter time to castrate resistance. It's not done in the UK as far as I know. We did have one member here who persuaded his oncologist to try it, but that was probably far too late in his treatment path, and he died during the first session of Testosterone injections.

User
Posted 11 Jul 2024 at 20:41

Thanks Leila,

Best wishes to you and David.  It's wonderful that David's PSA is still <0.1.  Long may it continues.  I can appreciate that you've had to make compromises in your lifestyle and that it has taken its toll on you both.

Take good care of yourselves.

JedSee.

User
Posted 11 Jul 2024 at 21:27
Thanks for such a positive post Leila….its so humbling to read that you and David are managing to look on the bright side of life and take what you can from it. I really do believe in the power of positivity….it won’t cure anyone but it will help you get the most out of what you do have.

Debbie

User
Posted 11 Jul 2024 at 21:33

Originally Posted by: Online Community Member
we have learned to manage what we have, enjoy life, and wring the last drop of fun we can each day.

Lovely post Leila. 👍

I've quoted the bit that resonates most with me. You can drastically minimise the effects of this disease if you can remain optimistic and are prepared to adapt your lifestyle.

User
Posted 11 Jul 2024 at 23:13

Leila, good to hear your story,not all good news but sounds like you are making the best of an unwelcome  situation.

I am sure that newbies will be encouraged by him still being here 9 years after a G9 T3 diagnosis.

Here's to many more years for you both.

Thanks Chris 

User
Posted 12 Jul 2024 at 10:17
I have no experience of this but I seem to remember that someone had a 'Prostap' holiday - maybe someone else can jump in?

If that were an option then maybe it would help with the libido?

I'm into month 4 of HT and I know what you mean, there is zero passion but it's great that we are and have been lifelong friends :)

Good luck

User
Posted 13 Jul 2024 at 19:02

Thanks Andy, 

David’s PSA was only 8.5 at diagnosis and 3 when he had the  lymph node  involvement, we have discussed between ourselves intermittent HT as he would like to have a break from some of the ongoing side effects. 
His concern is he manages the side effects reasonably well and is wary about dealing with an increase in his PSA. He has a zoom with his oncologist next week and it’s  on his list to discuss.

Managing the physical and emotional effects, have become part of his, and to a degree my daily life. Yes, it could be better, but David is wary of too much  change. 

His oncologist is very good, and forward thinking so it will be interesting to hear his views. 

Leila 

Edited by member 14 Jul 2024 at 13:42  | Reason: Not specified

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User
Posted 11 Jul 2024 at 20:41

Thanks Leila,

Best wishes to you and David.  It's wonderful that David's PSA is still <0.1.  Long may it continues.  I can appreciate that you've had to make compromises in your lifestyle and that it has taken its toll on you both.

Take good care of yourselves.

JedSee.

User
Posted 11 Jul 2024 at 21:27
Thanks for such a positive post Leila….its so humbling to read that you and David are managing to look on the bright side of life and take what you can from it. I really do believe in the power of positivity….it won’t cure anyone but it will help you get the most out of what you do have.

Debbie

User
Posted 11 Jul 2024 at 21:33

Originally Posted by: Online Community Member
we have learned to manage what we have, enjoy life, and wring the last drop of fun we can each day.

Lovely post Leila. 👍

I've quoted the bit that resonates most with me. You can drastically minimise the effects of this disease if you can remain optimistic and are prepared to adapt your lifestyle.

User
Posted 11 Jul 2024 at 23:13

Leila, good to hear your story,not all good news but sounds like you are making the best of an unwelcome  situation.

I am sure that newbies will be encouraged by him still being here 9 years after a G9 T3 diagnosis.

Here's to many more years for you both.

Thanks Chris 

User
Posted 12 Jul 2024 at 10:17
I have no experience of this but I seem to remember that someone had a 'Prostap' holiday - maybe someone else can jump in?

If that were an option then maybe it would help with the libido?

I'm into month 4 of HT and I know what you mean, there is zero passion but it's great that we are and have been lifelong friends :)

Good luck

User
Posted 12 Jul 2024 at 10:44

There is intermittent hormone therapy, which is available to some men on lifelong hormone therapy.

To do this, the hormone therapy has to get your PSA down to a low level (probably <1, and maybe even <0.1), and the rate of rise of PSA when not on hormone therapy has to be slow. When you come off the hormone therapy for a hormone therapy holiday, your oncologist will specify a level it reaches where you have to restart the hormone therapy, which is typically something like 5, 10, 20.

For men who can do intermittent hormone therapy, they usually spend longer off hormone therapy than on it. It does not seem to significantly reduce the time to become castrate resistant, but can give significant improved QoL for periods.

Intermittent hormone therapy is not used in the case of curative treatments with time-limited hormone therapy.

There is also a treatment called Bilateral Androgen Therapy (BAT). This is where hormone therapy is switched off and on over a much shorter period. Indeed, the period is too short for natural recovery from hormone therapy to work, so you stay on the hormone therapy all the time, but have Testosterone injections during the holiday. This also gives periods of improved QoL, but I get the impression that is at the cost of shorter time to castrate resistance. It's not done in the UK as far as I know. We did have one member here who persuaded his oncologist to try it, but that was probably far too late in his treatment path, and he died during the first session of Testosterone injections.

User
Posted 12 Jul 2024 at 22:47

Hi Leila,

David (and your) journey is an inspiration to all of us who have gone down the HT/RT route for whatever reason. Having just stopped my Prostap injections after 2 years(with Oncos approval and PSA <0.1 for 6 months!) due to joint problems,I now have the anxious wait every 3 months to see if they have zapped it all. The thought of being on Prostap for life I find VERY scary, but I’ve learned a lot from the past 2 years and will be better prepared should I ever need to go down this route.

Well done to both of you and I hope you continue to enjoy a good QOL for many years to come.

Andys post about intermittent hormone therapy is very interesting but I’m not sure if I could cope with the constant moving from one state to another.

Derek

User
Posted 13 Jul 2024 at 19:02

Thanks Andy, 

David’s PSA was only 8.5 at diagnosis and 3 when he had the  lymph node  involvement, we have discussed between ourselves intermittent HT as he would like to have a break from some of the ongoing side effects. 
His concern is he manages the side effects reasonably well and is wary about dealing with an increase in his PSA. He has a zoom with his oncologist next week and it’s  on his list to discuss.

Managing the physical and emotional effects, have become part of his, and to a degree my daily life. Yes, it could be better, but David is wary of too much  change. 

His oncologist is very good, and forward thinking so it will be interesting to hear his views. 

Leila 

Edited by member 14 Jul 2024 at 13:42  | Reason: Not specified

User
Posted 06 Sep 2024 at 10:34

I have just read this article, can sb explain why, is this true? 
https://www.wcrf.org/cooked-tomatoes-hills of steel-can-reduce-the-risk-of-prostate-cancer/ 

Edited by member 16 Sep 2024 at 02:51  | Reason: Not specified

User
Posted 06 Sep 2024 at 12:17
There is quite a bit of research that says lycopene is good for men with PCa, not sure how effective it is after diagnosis. We grow and eat loads of tomatoes I cook with them dry them, roast them. David was diagnosed nine years ago, and his PSA at his last test was <0.1 thankfully.

We eat mostly home grown veggies, and little or no processed foods. I cook all our food from scratch daily.

We take a selection of supplements and alternative stuff, we have read extensively about diet, we aren’t experts, but we do our best.

User
Posted 06 Sep 2024 at 12:21
There is quite a bit of research that says lycopene is good for men with PCa, not sure how effective it is after diagnosis. We grow and eat loads of tomatoes I cook with them dry them, roast them. David was diagnosed nine years ago, and his PSA at his last test was <0.1 thankfully.

We eat mostly home grown veggies, and little or no processed foods. I cook all our food from scratch daily.

We take a selection of supplements and alternative stuff, we have read extensively about diet, we aren’t experts, but we do our best.

User
Posted 06 Sep 2024 at 15:00
I remember over 10 years ago that tomatoes, particularly in cooked form and taken regularly were said to reduce the risk of getting PCa in the first pace.. I have seen noting to illustrate that going heavy on tomatoes after a man has PCa stops or slows progression after the disease has developed and I note the study linked to has so far found nothing to show it does. It is good that studies are now being done because there is no incentive for big phara to organise trials on natural or herbal material.
Barry
 
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