On going

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

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.

User

Posted 06 Sep 2022 at 12:53

👍it doesn't get better than that Leila. Long may it continue. More wine to celebrate now

Cheers

Bill

User

Posted 24 Oct 2022 at 14:17

This is not directly linked to PCa though it has been a useful purchase for David. Oddballs pants, since he's been back on he HT he has said the doesn't feel his underwear 'tucks him in' I found these pants called Oddballs, they are a bit pricy, a bit more than M&S maybe, but they do the job perfectly he says. The second lot arrived in the post today, and he was prancing around the bedroom in them, making me giggle! He reckons they are the best pants he's ever had. The colours and patterns are wonderfully bright, and a bit psychedelic. On the PCa front his last PSA was <0.1 he seems happy enough, and doing well. As I type he is up a ladder repairing a crack in the front or our house, he plans to paint the house next year. So he must be doing ok he's 72 and still working most days.

Leila.

Edited by member 24 Oct 2022 at 14:19 | Reason: Not specified

User

Posted 30 Oct 2022 at 21:54

Hi Leila and all on this interesting thread.

I wasn’t sure where to post on here as I’ve only just joined the forum.

my husband (aged 54) has just been diagnosed with PCa Gleason 6, T3a PSA 3.51. I’ve been reading on this thread about the impact of HT on the heart and I was looking for some advice/words of support as I’m very worried due to my husband already having an existing heart condition. Having the operation isn’t an option because of his condition but now I’m concerned the HT won’t be safe either. We’re meeting the oncologist in a couple of weeks but we really don’t know what will be the best treatment path for him.

I’m sorry to gatecrash your conversation, I’m just feeling very worried and looking for some advice/support - thank you x

User

Posted 30 Oct 2022 at 22:58

Hi snib best to start your own thread but I for one am interested in your case as like me he is a g6 t3a.

Is surgery completely ruled out? Or is it just one surgeon who is risk averse?

Is he otherwise fit and a healthy weight? I think HT is a vascular / BP risk so like most risks associated with that it's a lot less risky if he is a healthy weight to start with..

User

Posted 31 Oct 2022 at 00:31

Originally Posted by: Online Community Member

Leila.

Yes, I buy Oddballs for sons, son-in-laws and others - a fun present and money raised for men's health charities. Strangely, John isn't keen on them.

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

User

Posted 31 Oct 2022 at 07:34

Thanks for your responses, I will start a new thread. Just in answer to your questions the urologist didn’t think surgery would be an option due to his heart condition, my husband has had surgery in the past but always with local but the nurse said the operation had to be done under general. Overall my husband is generally fit and well so we are remaining positive, we just want to make sure we choose the safest treatment path which I’m sure the oncologist will discuss with us.

I’ll post a link to the thread on here for anyone who is interested in following or has similar concerns (once I’ve worked out how to do that?!!) sorry for gatecrashing this thread….I wish your husband all the best Leila

User

Posted 02 Nov 2022 at 16:35

Hi NS78,

David had his heart attack a few years after the prostate cancer diagnosis. We had a number of medication glitches as some of his meds clashed with others.Getting the specialists to discuss and decide was frustrating, and difficult. In the end I wrote a letter to both and this seemed to work. An assertive polite wife can sometimes help. 😉

David had recovered well and his last PSA was <0.1 he’s doing ok.

Hope this helps.

Leila.

User

Posted 03 Nov 2022 at 21:38

Thanks Leila, I will certainly be an assertive wife…I’ve not stopped researching since he was diagnosed 2 weeks ago!! This forum and reading the different journeys has been so helpful.

Thanks for taking the time to reply, so pleased your husband is ok at the moment, I wish you both all the very best for the future and I’ll continue to follow your journey on here.

Best wishes

User

Posted 22 Nov 2022 at 19:54

David’s PSA has just arrived, it is a good <0.1 I’m happy to say.He feels good, and seems to be doing well. Of course we’d both like him to have a libido, but sadly it’s not on the cards.

Thankfully I’m not chewing the door knobs with sexual frustration. I suppose us growing older together goes have its plus sides.

Delighted with the PSA and a decent glass of red wine is in my sights. So it could be worse.

Leila

User

Posted 22 Nov 2022 at 20:17

Very pleased for your score. I get the libido thing. It’s taken 2 years of HT to knock it , and I still know it’s missing and doesn’t feel right in my world , but I guess there is no stopping it. Thankfully it’s happened at a time of life where it seems to suit us both.

Good luck going forward x

User

Posted 22 Nov 2022 at 20:30

Leila, great news , really pleased for you both.

Thanks Chris

User

Posted 22 Nov 2022 at 20:41

Great news Leila.
Just trying to imagine you chewing the door knob 🤦‍♀️. But get what you mean .
No one that hasn’t gone through this will understand. I find it mostly makes me feel sad like I’ve lost someone close .

Phil

User

Posted 23 Nov 2022 at 00:42

Yay!!!!

You could put a decent vibrator on your Christmas list? But perhaps be cautious opening presents in front of an ageing aunt on Christmas morning :-/

Edited by member 23 Nov 2022 at 00:45 | Reason: Not specified

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

User

Posted 23 Nov 2022 at 02:12

Haha, Lyn, the deed has been done a while back. Just careful timing on usage.😉joking apart, these things have to be seriously addressed. By the way. I am the aged aunt in my family. 😏

Edited by member 23 Nov 2022 at 02:14 | Reason: Not specified

User

Posted 23 Nov 2022 at 10:38

Sometimes I worry that something sudden and tragic might happen to J and I, and the children will be completely traumatised by the items they find in our bedroom 🤯😳

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

User

Posted 23 Nov 2022 at 10:55

I suspect there will be squishy latex rings all over the place when the kids sort out our stuff!

Hopefully they won't have to find out how good they are in certain circumstances.

User

Posted 23 Nov 2022 at 13:35

Same thing Lyn. It was like a Lovehoneyshowroom upstairs haha. Ditched the lot now as I think it had already been peeked at. 😀😀

User

Posted 23 Nov 2022 at 13:57

Same here, I hope whoever survives out of the two of us has the savvy to clear out the ‘toys’ and paraphernalia before the family get to it. Horror of horrors our families would turn pale with shock.
Writing this makes me thing a bit of decluttering might be on the cards, but not everything.

User

Posted 23 Nov 2022 at 16:40

God, I feel like a right Conservative now listening to you lot 🤦‍♀️

User

Posted 23 Nov 2022 at 19:45

Haha Phil, just realists managing a challenge in a grown up way.

User

Posted 24 Nov 2022 at 13:30

Good for you , guys and gals , do what you need to do and enjoy yourselves 👍

I know my wife wouldn’t entertain anything like that. To be honest we haven’t been ‘intimate’ for over a year now mainly due to her menapause. Feel sad about that 😢but she is ok about it, and life goes on.

Phil

User

Posted 24 Nov 2022 at 13:59

Ahhh Phil, that's hard for you. It’s actually the same here as David’s on HT he’s about as interested in sex as I am in laying concrete. Well actually in a long gone former life I had to learn how to do that, another story.I’m not a young chick anymore either. 😉

We are happy and managing our lives well. T’aint easy, we find joy in each day. David does the occasional gig, he sings and writes music, enjoys a good moan most days, so it’s ok really.

Leila.

User

Posted 24 Nov 2022 at 14:23

Ah Leila, isn’t it sad how this disease affects so much of our lives.
Although I’m on the Zoladex plus Bicalutimide I still get those ‘Randy’ thoughts almost every night 😉. I just worry I’ll die before ‘it’ happens again… 🤷🏼‍♂️

Anyway just gotta get on with it haven’t we.

Im off flying tomorrow as my mates invited me up in his plane .. ✈️ Little trip round the coast of Essex. Just got to find my Aviator sunglasses 😎 and pretend I’m Tom Cruise…..
I’m lucky to have good friends 👍 and I include you and the others on here in that.

Take care,

Phil

User

Posted 06 Feb 2023 at 18:43

David is getting tooth and jaw pain and aches, I have read it can be a side effect of his hormone treatment, he’s on prostrap & apalutamide, has anyone else experienced this. I’ve tried to tell him it’s too much talking, but seriously it’s not good.

I’ve got him a mouth guard as he grinds his teeth at night, this hasn’t helped. Gargling with salt water & using clove oil seems to provide temporary relief.

He’s been to our dentist and had X-rays and he has no decay or gum problems ( thou our dentist isn’t brilliant in my opinion) I would like him to try another dentist, but before he does this any suggestions or similar effects.

Suggestions anyone.

Thanks

Leila

User

Posted 07 Feb 2023 at 10:35

Can’t give any advice I’m afraid Leila as I’m behind David on this journey. Really hope you can find some relief for David’s pain. Tooth/jaw pain is horrible. I’ve just recently changed opticians and so glad I did, so I’d try another dentist at least for a 2nd opinion.
I must admit I’m dreading my next PSA test as I’m pretty sure I’ll have to have the Apalutamide, Enza or Abi… So listening to probable side effects from others at least prepares me for it…

Good luck , hope you get it sorted soon.

Phil

User

Posted 07 Feb 2023 at 13:47

Thanks Phil,

Firstly good to hear from you. I’m still in the persuading mode about the dentist, it’s an on going mission.
PSA time is hard the stress in our house goes up, though over the years we’ve learned to plan for it. I’ll be thinking about you… let me know how it goes.

David’s PSA last time was <0.1 he’s on a selection of meds. His main side effect is tiredness and the current tooth, jaw pain. He’s due to have his prostrap & PSA at the end of February or early March.

We have booked a week away in March, a place we both enjoy in Cornwall it’s a really nice lodge with a very good pool, spa and just a couple of miles away from St Ives. we can plan to go away as our dear old cat died a while ago, so we are free to go holiday.
So it will be swimming steams sauna, walks and evenings in St Ives having a glass of something naughty and a meal.
Then home to plan our veg garden, thankfully where we live live is beautiful in spring and summer, overlooking the Welsh hills and 10 minutes from the beach.

keep in touch, stay positive Phil

Leila

User

Posted 07 Feb 2023 at 14:43

Hi Leila. Good luck with the dentist. Must admit mine is so good, I think she double checks everything because of the HT .

Davids PSA is staying low so that’s brilliant. Tiredness is something we all seem to get. I was at the gym this morning and I’m afraid I sometimes push too hard and I get home and have to sit down with a coffee for an hour to recover.
Cornwall is so beautiful . We must get down there sometime (soon).. it sounds perfect where you are staying and St Ives is lovely. It also sounds like you live in a beautiful spot as well. Good luck with the vegetable garden.

We are off to stay with friends on Exmoor next week . There is a motorcycle and car trials starting and finishing at their local pub so should be good fun albeit a bit chilly up on the moors… thermals at the ready.

We’ve got a few days in March in Jersey then in May off for a couple of weeks to New Orleans , then paddle steamer up the Mississippi to Memphis to pop in on Elvis. Someone said he’s working in a chip shop there 🤣.

Gonna keep up the holidays till I can’t do it anymore. Unfortunately our travel insurance is due just before we go and it’s just after I get the results of my PSA test back… So if I have to go on the heavy duty stuff I’ll have to tell them and hope it’s not too much more expensive.

Best of luck with David’s next PSA test 👍

My PSA went up again last test so expecting it to rise again next test although hoping not… so I’m gonna be a bit jittery for the next 3 months…

My counsellor once told me I had to be kinder to myself ! Still not quite sure what she meant 🤷🏼‍♂️ 🤣

Take care

Phil

User

Posted 07 Feb 2023 at 16:17

The trip sounds wonderful, as does Goalhanger's!

Probably nothing except a side effect of the HT but I think I would be tempted to let the onco know just in case it is new mets in the jaw or skull?

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

User

Posted 07 Feb 2023 at 23:29

Thanks Lyn, He has a phone consultation quite soon, I’ll get him to discuss it then. Unfortunately he doesn’t get to see the oncologist, he gets a pharmacy call every 6 weeks to discuss how the meds are going. I’ll make sure he lets them know, and see if he can get an onco appt.
He tries to keep the medical intervention to a minimum. Not having too much interference as he calls it suits him for as long as it can last.
The dentist thinks it could be sensitive teeth, and he has be given some expensive toothpaste.

His last PSA was < 0.1

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