On going

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 👍

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. 😉 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 👍

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

User

Posted 27 Apr 2023 at 19:41

I’m on Zoladex and was really worried about muscle wastage. After lots of research I came across the research they had done on the effect of resistance training for men on ADT - it was by Robert Newton, plenty of videos on YouTube. This message is the same as that by pcri in US. From what I could see the important thing is to push weights to failure, otherwise you gong build muscle fibre. I’m a keen cyclist and found that’s great for cardio but not as good as weights for preserving muscle. So far I’ve preserved, and even increased, muscle mass. I also feel less fatigued than I was expecting. What did help was working with a personal trainer to help ensure I had the right technique and kept me focused.

User

Posted 28 Apr 2023 at 17:27

Hi Fbc. Yes resistance exercise is good for us on the HT, especially if you can push to failure. It’s what I always do on every exercise. Not much improvement like there would be a few years ago but got to keep going.
Badminton I find great for balance and general fitness. It’s also a great get together at half time with a cup of tea 😁

Phil

User

Posted 18 May 2023 at 18:27

Well, the three monthly PSA was on Tuesday and has come back at < 0.1 David is delighted, apart from the ongoing tooth jaw ache he feels good. The dentist thinks he might be grinding his teeth, I’m wondering if it could be stress as it seems to increase when he’s worried about stuff.

Planning a summer in our beautiful garden and thinking about autumn and winter holidays. We tend to enjoy summers at home as we live in a beautiful place.

User

Posted 18 May 2023 at 19:05

Great news Leila. So pleased for you both. Yes us too. Lazing and gardening in the beautiful New Forest. Ponies and calf’s everywhere. Birds singing. All good.

If you have the BBC sounds app , I’m listening to the sleeping forecast every night. Sends me straight to sleep and less stress. A mixture of the BBC4 shipping forecast and lovely soft music. Keep well x

User

Posted 18 May 2023 at 19:29

That’s great news Leila . Long may it continue 👍

Phil

User

Posted 18 May 2023 at 20:52

I love the shipping forecast music, when I can’t sleep I listen to it, then The world service. I was watching red kites this morning, nature is wonderful.

User

Posted 18 May 2023 at 22:00

Leila, good to hear things are going okay. Always good to hear things are working out for people. I was talking to a guy today who had RT years ago, not on any medication and PSA <0.01.

Thanks Chris

User

Posted 19 May 2023 at 12:58

Hi Leia good to hear the PSA result, hope we get some warm weather and showers at night so no watering either, just enjoy the garden

User

Posted 19 May 2023 at 21:10

Good news on the PSA front - I am so pleased for you.

Re teeth grinding - some years ago, the dentist made me a guard to wear at night to stop me doing this. Worth asking?

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

User

Posted 19 May 2023 at 21:49

Hi Lyn,

He has a mouth guard, and it might work if he’d put the bl@*dy thing in his gob 😎Evidently it’s uncomfortable, dare I suggest going back to the dentist… what do I know.
Yes, we are delighted with the PSA he’s doing well, enjoying life, and he’s forgotten what a libido is. I am so glad I’m not a young wife 😏

User

Posted 03 Aug 2023 at 13:33

Just got David’s PSA results a happy < 0.1 😊 Lyn, time for you to have a celebratory fag 😉we will celebrate with a decent red wine, and maybe dance around the garden.
It’s eight years since he was diagnosed, been a bumpy ride sometimes. The supplements, and alternative treatments seem to be doing their stuff along with the mainstream HT.

To be able to write this eight years on with an original Gleason 9 Tb3 diagnosis. Every days a good un.
Time to plan some autumn & winter holidays.

Leila.

User

Posted 03 Aug 2023 at 14:16

Fantastic to hear your news Leila. Keep enjoying life and looking forward. Very best wishes to you both.

Ange x

User

Posted 03 Aug 2023 at 14:43

That is brilliant news Leila. So very pleased for you both . I think a celebratory drink is perfectly in order 👍

Phil

User

Posted 03 Aug 2023 at 14:48

Lovely Leila. Eight years for me too and G9T4. Keep strong together and enjoy hols xx

User

Posted 03 Aug 2023 at 15:10

Leila, great news, long may it continue. Really good to see people's good news.

Thanks Chris

User

Posted 03 Aug 2023 at 20:51

Congratulations, Leila.

You must be doing something right, with all those supplements! Long may it continue.

Best wishes,

JedSee.

User

Posted 04 Aug 2023 at 09:54

Wonderful news Leila, long may it continue

Arthur

User

Posted 04 Aug 2023 at 11:42

Thank you for your responses, sharing good news is always good.
Leila

User

Posted 01 Nov 2023 at 11:23

Another happy <0.1 once again. David was diagnosed in in September 2015. He has weathered a heart attack and the ongoing awful Welsh weather we’ve endured lately and he’s doing well.

The pre PSA stress doesn’t get any easier for either of us, but today we smile, and book our holidays for winter.

He still takes enough medication and supplements to make him rattle, but as long as he’s doing well and the score on the doors remain where they are we are happy.

Who’d a thought it with a Gleason 9 Tb3 diagnosis eh?

Weather today is beyond awful, so I’m baking bread, reading my book and David’s writing music and playing, Happy days.

We are still working our organic veggie garden and David sings and play every day, writes music and has a post doctoral qualification in moaning.

Thanks for being there, the support is so appreciated.

Leila

User

Posted 01 Nov 2023 at 12:13

Couldn’t be more happy for you both Leila. Celebrations for sure ok and live every day to the full. Yes the weather holding us back but I’m fixing up all the bits of damage on my RC planes in the garage. Bit of music , maybe a beer later …,

Let’s both make that G9 ten year club together ok x

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