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Salvage radiotherapy

User
Posted 09 Oct 2023 at 00:12

Originally Posted by: Online Community Member

May I ask....  After your 2 years of HT, how long did it take for your hot flushes...muscle pain... brain fog.... and libido to come back ?

I pretty much been through the same scenario as you and just finished my 2 years HT. Hence my question...

Well I can't see the original question [oops, maybe there wasn't one!] but from my experience the hot flushes went quite quickly, though I have to say that by the end of 2 years they weren't bothering me much. Muscle strength didn't just come back automatically  like testosterone. It needs exercise but at least, post HT, the exercise makes progress. Brain fog ... hard to measure but I think there was a gradual improvement that at nearly 9 months post HT is back to normal. I'm not sure about that though. I'm a bit ADD and that adds an element of complexity. Libido, about 7 to 8 months. I haven't had a testosterone level test yet but I suspect the rise still has some way to go. I'm rather glad of that, it's a bit of a shock! I gained a max of about 7kg during HT but that's fallen back to about 2kg above normal. I didn't suffer from joint pain and some minor leg pain disappeared early after stopping the HT.

Jules

Edited by member 09 Oct 2023 at 00:15  | Reason: Not specified

User
Posted 20 Dec 2023 at 09:56

I haven’t updated for a while. My PSA blood test taken 11/12/2023 is still <0.1 which is always a relief. I am still having bowel issues. I’ve now seen a specialist (he apologised I’d had to wait more than 18 months to see him) who has arranged a colonoscopy for 6/1/2024 after a screening test raised issues. Hopefully nothing too serious…..

 

Ido4

User
Posted 20 Dec 2023 at 10:06

Ido4, another great result. Hope the colonoscopy doesn't show any surprises. Having had two preps but only one procedure, dab don't wipe 😄.

Thanks Chris 

User
Posted 20 Dec 2023 at 11:10

Thanks Chris. This will be my fifth colonoscopy, I’m dreading the prep, dabbing certainly helps!

 

Ido4

User
Posted 20 Dec 2023 at 18:09

That’s what I like about this forum…we always seem to get to the bottom of it!

Really pleased your PSA is <0.1…I live in Hope that one day I will get that magic < sign in front of my 0.1.
I hope you get your bowel issues sorted🤞

Derek

User
Posted 20 Dec 2023 at 18:10

Originally Posted by: Online Community Member

Thanks Chris. This will be my fifth colonoscopy, I’m dreading the prep, dabbing certainly helps!

 

I suffered terribly with sore anus for many years for a number of reasons including persistent diahria. Had to have a colonoscopy and in the initial pre consultation the colorectal surgeon advised me to use Bepenthan nappy rash cream. I've used it almost every day since even when not needed. Hardly ever had a sore arse since and even when i do its sorted before it gets going.That's 7 years clear after over 25 years of pain. You can't use to much. If it's OK for babies bum it won't do you any harm.

Good luck with the results

Cheers

Bill

User
Posted 20 Dec 2023 at 22:36

Thanks Derek and Bill. Derek, I don’t have a prostate so the <0.1 is the only result I want to see. Anything above that is a problem. I’ve followed your story and hope things continue to go well for you. Bill, I’ll look to get some of that cream. 

Ido4

User
Posted 26 Feb 2025 at 11:22

I haven’t updated for a year so thought I would share that in December 2024 my PSA is still <0.1 which is always a relief. Because I’ve had surgery, radiotherapy and hormone therapy I do suffer from side effects but I try to just get on with my life. It will be 10 years in July since surgery. My recurrence in 2016 was very high grade with PSA doubling every 4 weeks or so. My oncologist was convinced radiotherapy would be a waste of time and leave me with unwanted side effects. He was also convinced I had micro mets.

I feel blessed to still be here, enjoying life, holidays and now three grandchildren.

Best wishes to all.

Ido4

User
Posted 26 Feb 2025 at 12:22

Hi Ido4,

Great to see you doing so well long may it last and 10 years on is fantastic.I am at 8 years and six months so maybe we are becoming the old men of the site. I do hope our journeys help other members with their decisions too.

Regards John.

User
Posted 26 Feb 2025 at 13:12
Best wishes to you as ever. Lovely to hear some success stories and outcomes 👍👍
User
Posted 26 Feb 2025 at 15:29
Great stuff Ido4, 10 years for me this summer, no radio therapy yet but I still have a nagging rising PSA. Fortunately I have learnt to ignore it with the help and support from this site.
User
Posted 26 Feb 2025 at 16:47

Well done to both of you, hearing good news stories really boosts my morale.

All the best for the future.

Derek

User
Posted 26 Feb 2025 at 17:07

Hi John, good to hear from you and good you’re doing well.

i haven’t been on the forum as much in the last year. I visit occasionally.

I’m still happy to help out with replies on the forum but there are a good few more able than I who have joined more recently.

Stay well. all the best.

Ido4

User
Posted 26 Feb 2025 at 17:10

Thanks Chris. I am so happy you are still going strong.

As you once said to me I chose to face the cancer head on rather than wait when I had recurrence.

Good to hear from you. 

Ido4

User
Posted 26 Feb 2025 at 17:11

Thanks Derek, I have followed your journey closely.
You’ve also been great at helping others on the forum.

Hope you’re still doing well.

Ido4

User
Posted 26 Feb 2025 at 17:16

Hi Francij1,

thank you. I’ve followed you closely over the years too. I saw that your PSA is staying around 0.13. It’s good you’ve had PSMA scanning and there doesn’t seem to be a major issue. It’s hard to ignore things but you’re absolutely right to do that and get on with your life. Carpe Diem. 

Ido4

User
Posted 26 Feb 2025 at 23:11

Ido4, great news long may it continue,are you still on any treatment.

Thanks Chris 

User
Posted 27 Feb 2025 at 09:28

Thanks Chris. I’m not on any treatment thank goodness.

I still follow your situation. So sorry you are back on treatment. Have they added Abiraterone for you yet?

Best wishes as always,

 

Ido4

User
Posted 27 Feb 2025 at 11:37

10 years, great result Ido4. Gives the rest of us hope, keep going brother.

User
Posted 27 Feb 2025 at 12:30

Ido4, 

Congratulations on ten years post surgery and a great PSA result. 

Cheers, 

Kev.

 
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