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User
Posted 08 Feb 2023 at 01:35

Ahhh, you’ve got me thinking Lyn, he uses headphones a lot when he’s writing music. Could there be a link, I’m wondering if your curveball ball just might gave triggered something and the tooth /jaw ache is cranial. The jaw pain and toothache have come in since he started using  these new headphones, and they are very tight. 
A discussion with him I think.

in the mean time he’s dedicated to the new expensive toothpaste and oil of cloves. 

 

User
Posted 08 Feb 2023 at 07:26

Leila, hope the PSA stays low. I am not on any HT or similar treatment but had a few dental problems over the last few months. I put mine down to lack of care during COVID and old age, perhaps with an element of inappropriate treatment from our previous dentist. I had a couple of abscesses, followed by a couple root canal fillings in the last few weeks. I was trying all sorts of gels, I refer to my wife affectionately as an oil witch , she gave me some clove oil to try and although not a pleasant taste the effect was most welcome and helped with the abscesses. Also use the on guard toothpaste and mouthwash.

Sorry to hear about your cat ,we were told our 19 year old cat would probably not last three months last year, at his booster appointment last month the vet said he at this rate he will still be seeing her in three years time.

Hope all continues well for you both and enjoy your holidays.

Thanks Chris 

 

User
Posted 08 Feb 2023 at 11:17

Thanks Chris, It appears I am also an oil witch,he’s been chewing cloves and now using the oil. David has had regular check ups and thankfully very little treatment required, then this. He has been prescribed toothpaste and with the cloves he  says it’s slightly better today. He says the salt water gargle and cloves are the most effective.

Yes, sad about Ted our cat, he was a lovely animal. The other two are thankfully in good health and quite a bit younger. 
David was diagnosed in 2015 Gleason 9 Tb3, then a heart attack in 2021, on the whole he feels well and has a good life, active and firing on all cylinders. No libido, but we expected that. Looking forward  a <0.1 PSA end of the month.
I’ve had cats for most of my life when living in the UK as a young woman I worked abroad for a while. One cat Tabitha Jane lived until she was 23, and Clarrie   until she was  21. A well loved cat will enjoy many years.

Thanks again Chris, hope you stay well and healthy.
Leila. 

 

 

 

 

User
Posted 21 Feb 2023 at 20:33

Got the PSA results today, and it’s <0.1 we are delighted. David’s feeling quite well, the toothache seems to be reducing with the prescribed toothpaste. 
I can feel a glass of red wine coming on, on a school night too. 

one delighted wife 😊

Leila 

User
Posted 21 Feb 2023 at 20:57

Leila, great news really pleased for you both.

Thanks Chris 

User
Posted 21 Feb 2023 at 21:19

Fantastic Leila onwards and upwards  all the best gaz πŸ‘

User
Posted 21 Feb 2023 at 21:45
Ooooh! I will have a celebratory fag for you both xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Feb 2023 at 21:48
And I’ll be having a glass of wine for you both. Nice one and best wishes x
User
Posted 22 Feb 2023 at 00:25

Great news Leila, really pleased for you both. Hope you enjoyed the celebratory red🍷

User
Posted 22 Feb 2023 at 02:26

Excellent.

Dave

User
Posted 22 Feb 2023 at 05:41
Great always glad of good news

Cheers

Bill

User
Posted 22 Feb 2023 at 13:44

Thank you for  your comments. We were  so knackered we missed out on the red  wine had a cuppa and sidled off to bed. We will enjoy it another evening I’m sure. 
oh Lyn, your fag was much appreciated, as an ex smoker could you waft a bit in my direction next time. I gave up over 20 yrs ago. πŸ˜‰ still fancy a fag sometimes. 

User
Posted 06 Mar 2023 at 12:25

David went to the surgery for his three monthly  Prostrap injection today, to be told there is a supply difficulty with Prostrap so he was given Staladex instead . He is concerned about this  as the Prostrap has suited him well so far. His PSA has stayed <0.1  ,has anyone any experience of this shortage, and could it have an effect on his current PSA results.
 As for the CNS we’ve haven’t been offered this or been told about it, so not sure about availability here in West Wales. David gets a three monthly call from the hospital pharmacist. 
Currently  he has no named oncologist either. Thankfully he seems to be doing really well. 
Thanks Leila 

 

User
Posted 06 Mar 2023 at 12:34

Hi Leila. Great news about David’s PSA being steady now. Everything seems to be working well. 
Never heard of Staladex , is it maybe just a brand name for the same stuff …?

Im sure someone in here will know and post a reply. 

Take care

Phil

User
Posted 06 Mar 2023 at 12:52

Thanks Phil, I’ve just done a bit of reading, and it seems it’s similar. Hope you are doing ok.

Leila. 

User
Posted 06 Mar 2023 at 13:03

Hi Leila, yes I just googled it and it seems to do the same job. Hopefully no new side effects with it. I know Prostap and Zoladex are primarily the same but I suffered horribly mentally with Prostap but not so bad on Zoladex . But saying that the Zoladex doesn’t seem to be working as well…..

Hospital had given me 12 more counselling sessions so just waiting for a call to organise timing. 

Im just biting my nails till the next PSA in 2 months. I’m trying to be positive but it is hard. I have a friend with PCa who’s on a similar timeline and his PSA has just started to go up , although from a lower baseline to mine. It has started him worrying now although he’s a much more positive person than me 🀷🏼‍♂️.

Anyway, hoping David gets on well with the Staladex this time and fingers crossed the Prostap is available next time. 

Take care, be positive πŸ‘

Phil

User
Posted 06 Mar 2023 at 14:03

It's exactly the same drug as Prostap (Leuprorelin), just a different brand, although that doesn't mean the slow release profile will necessarily be exactly the same. Conversely, Zoladex and Decapeptyl are different drugs, although all 3 of these drugs work the same way.

This is the second time I heard of someone being given Staladex, having never heard of it before, so that might well point to a Prostap shortage.

User
Posted 06 Mar 2023 at 14:53

Thanks Andy, yes, it seems to be a shortage in our area. 

Leila. 

User
Posted 06 Mar 2023 at 17:05

Hi Phil,Thanks for the post. David seems to be doing well, he takes his prescribed medication and a raft of supplements as well. Many hours of reading and looking at all angles of this dammed disease. Good to read you've got some counselling on offer, I hope it keeps you going, and helps. I'll be thinking about you, counselling can be quite challenging, as well as helping.  David thankfully seems to have managed the emotional mental health side of the HT well, though he does get a bit tearful now and again, but he did before he had PCa.  The main difference according to D with the Staladex is its injected into the stomach, something he'd not had before. We are off to our favourite UK holiday place next week, I'm trying to persuade him to renew his passport, and we can go somewhere further afield. We both done a fair bit of travelling  in out time. I lived overseas as a youngster, and he toured the states and lots of other places  as musician. We both loved travel, though I got into some ' hot spots' when I was in the middle east!  Travelling from the West Bank to Jordan I recollect was interesting for a single western woman. Wouldn't have missed it all for the world. We also backpacked around SE Asia in the early 2000's it was great. I'd be up for it again if we could. After the holiday it's operation veg garden.  Summer here can be lovely, and we both love our garden. Anyway less chat. Thanks Phil, keep going me dear.

Leila 

 

 

 

User
Posted 13 Mar 2023 at 22:09

David is on lifetime HT and he’s experiencing some levels of muscle wasting. He rows 4,000 metres 3x a week and is quite active. Has a one any suggestions on what exercise regime would help him. He is fairly fit and fully recovered from his heart attack 18 months ago, the stent seems to be doing a great job. He is 72 not overweight. He says he feels his muscles are wasting away. 
advice or suggestions welcome. 

Leila 

User
Posted 13 Mar 2023 at 23:04
PCUK research a few years ago suggested swimming, Leila.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Mar 2023 at 23:55

What good timing, we are currently on holiday &  he’s swimming 50 lengths a day. Me, well I managed 44.

Thanks Lyn. 

User
Posted 14 Mar 2023 at 11:39

Hi Leila. I looked into the exercise needs for when you’re on HT and found the recommended regime is a mixture. So I do cardio first , 15 mins rower then full body weights and 15 mins bike at the end. I do push myself a bit too much but I can’t see the point of just going in there and going through the motions. I try to do as heavy as I can do each time. I’m not moving up much as I would without the HT or if I were younger but it’s good to see any improvement. 
I also read recently that they recommend HIIT workout which is High Intensity interval training. I going to give it a try when I’m a bit fitter. 
Swimming is a really great exercise too. Seems to use so many muscles without the fear of damaging any muscles.
4000m on the rower is good especially 3x a week. I only do 3000m . Sounds like he’s doing really well . So many people our age just let themselves go 🀷🏼‍♂️.

Nearly forgot I started playing badminton in an over 50s group once a week and it’s great. Really helps the brain and I think it helps with balance and strengthens the ankles so we don’t get those ‘falls’ that us old folk get 🀣🀣

Take care, 

Phil

Edited by member 14 Mar 2023 at 11:59  | Reason: Not specified

 
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