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User
Posted 01 Aug 2022 at 22:09

Leila, same situation with an elderly cat who was not expected to still be here, but she keeps on going. Love your part of the world, take care.


Thanks Chris 😺

User
Posted 01 Aug 2022 at 22:53

Great news on the latest PSA result Leila, long may it stay that way. I’m the same, I worry about every ache, pain and cough that rob has!! I drive myself mad. 


Hopefully you will find a sitter for your cat 😂 and can get off holidaying. We bought a motorhome so we didn’t have to leave our dog behind….although this year has been a bit different. 


Take care x


 

User
Posted 02 Aug 2022 at 09:26

Hi Leila, yes we too have a cat but luckily our youngest lives nearby and he or more usually our Daughter in law pops round twice a day. We have neighbours that would help too. Very lucky. We went to Oz years ago for nearly 6 weeks and when we got home one of our cats didn’t come home for 2 days - I think he wasn’t happy with us 🤦‍♀️… 


Maybe you should advertise on here for a sitter 🤣. Would your sitter have to look after the small holding ….? 


I’m finding I’m getting more tired now and not sure if it’s the Bicalutimide or not . So, slowed down with gardening etc… but am joining a gym when we return from holidays… hopefully that will help. I already play at an over 55’s badminton session which is a lot of fun and hopefully helps with fitness and co-ordination.


Take care, 


Phil

User
Posted 15 Aug 2022 at 23:11

David has has slight erections over the last few days, he’s concerned this may be an indicator that his hormone treatment is beginning to fail. He’s very jittery as he’s not due a PSA or his prostrap injection for a while.


Is it worth having an early PSA? 


Thanks


Leila. 

User
Posted 16 Aug 2022 at 00:27
Was he actually feeling randy or just getting semis in that weird non-sexual way that men sometimes do (ie as a reflex response to emptying his bowel or similar)?
It may be nothing to worry about but if he is having new sexual feelings and it continues, I think I would want a PSA test and testosterone reading if at all possible.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Aug 2022 at 01:03

This is NOT very worrying. It is a little bit worrying but NOT very worrying.


The thing which will be VERY worrying is when the cancer evolves to thrive without testosterone (which nearly always happens eventually).


What you are describing is a possible return of testosterone, but if that is the case another ADT can be used to block testosterone, and the cancer will then remain dormant (until it evolves to thrive without testosterone).


 

Dave

User
Posted 16 Aug 2022 at 01:45

Not feeling in the least bit randy he says. He’s debating whether to wait for his PSA about a month away. He will also have a testosterone test with the PSA. 
Thanks


Leila. 

User
Posted 16 Aug 2022 at 09:05
I think it will be fine Leila - if he was having sexy thoughts I would have been a little more concerned. Wait and see if it continues or becomes more frequent?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Aug 2022 at 09:26

Originally Posted by: Online Community Member


What you are describing is a possible return of testosterone, but if that is the case another ADT can be used to block testosterone, and the cancer will then remain dormant (until it evolves to thrive without testosterone).



If it were the case that testosterone was returning, it could just be that the most recent injection had failed in some way (stored incorrectly, injected incorrectly or from a poor batch?) or that the 3 monthly injection is no longer lasting 3 months (Bazza had to have the 3 monthly depot every 10 weeks to keep his testosterone down). This is why testosterone reading is so important to men on long-term HT. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Aug 2022 at 10:06
I’m hoping my treatment is going ok Lyn ? We have never once discussed my T level. I’m just assuming it’s ok or he would be pushing me for Enza ? The psa is still on the fall so far and it will be 21 months on Decapeptyl next month. To be honest I’m suffering very few of the side effects. Mainly fatigue and hot flushes. But to be truthful although lowered my libido is still fine and probably higher than my wife’s. And due to continuing use of the pump and 4x5mg Tadalafil per week I’m still waking up with a semi and get an erection no probs with stimulation. Maybe ( probably) I’m just weird heh x
User
Posted 16 Aug 2022 at 11:15

‘Maybe ( probably) I’m just weird heh’  You said it Chris 🤣…


But, seriously the one thing i have gleaned from following posts on the forum is everyone is different…


I’m actually getting more happening ‘down there’ lately even though I’ve added the Bicalutamide to the Zolodex.  I didn’t lose my libido when was on Prostap and my specialist nurse explained that its many things that create libido, including memory and how you feel about yourself 😳 !


My consultant doesn’t seem to like to measure Testosterone either, no idea why. Although he may do if my PSA is still going up at the next test. Keeping busy so I don’t think about it too much 😬


Leila i would say waiting a month till next test would be fine especially as you have testosterone checked as well. That will tell you if the treatment is working or not. But as Lyn says it could just be a rogue injection that didn’t take properly. So you will likely have to wait till after the next injection and test to see if there is a trend or not. At the moment the only thing worrying you is the slight erections and as you can see many of us still get that when the treatment is working fine.


I will have my fingers crossed for you that there is nothing to worry about.


Phil

User
Posted 16 Aug 2022 at 19:17

Thank you for your responses, I’ve read them all out to him, he’s a lot calmer today, thankfully. David just cant bring himself to post here, but always wants or needs to know what’s being said. His BP has dropped and he seems less concerned. Phew, calmness  resumed till PSA next month. 
Thanks all, you advice help and support is always appreciated.


Leila 

User
Posted 16 Aug 2022 at 19:54
Ooh, somewhere in the back of my head there is something about blood pressure and involuntary erections?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Aug 2022 at 20:29

Ahhh, I’ll look into it Lyn, could well be, he’s been a bit stressed the last couple of days. 
Thanks. 

User
Posted 16 Aug 2022 at 21:09

I'd done 5 months on Zoladex and was just about to start RT when I got some unexpected spontaneous erections. I was fearing the latest Zoladex injection hadn't worked, so the GP gave me a Testosterone test (and extra PSA test). Testosterone came back as 0.2nmol/L, which is about as low as hormone injections can get it (1.2nmol/L or lower is considered OK). Also PSA was still dropping. So all was OK, and I could just enjoy the erections, although I think they went away shortly after that.

User
Posted 19 Aug 2022 at 20:17

Thanks Andy, he’s been a bit stressed. The erections  seem to  have abated, so it was possibly stress, or the prostrap situation. He’s due a testosterone and PSA in early September….followed by a Prostrap jab soon after. So we will see. Being Gleason ‘ Tb3 we are aware things are not simple. 

Thanks 


Leila 

User
Posted 03 Sep 2022 at 16:43

Well ,it's that time again, PSA due on Monday morning. The last couple or so have been <0.1 since he's been the new cocktail of drugs. The stress time doesn't seem to go away.David is making hints about a visit to the pub. Mmmm, I might pick up on the hints, maybe. 


Leila. 

User
Posted 04 Sep 2022 at 00:10

I've just got back from the pub. Didn't need any hints.

Dave

User
Posted 04 Sep 2022 at 18:56

As it was raining and the pub is in a beautiful bay, well with sitting outside, it’s beautiful. So, we decided to share a bottle of red wine at home. 


Leila 

User
Posted 06 Sep 2022 at 12:01

Happy days PSA below <0.1 


Leila. 

 
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