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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 

 
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