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User
Posted 06 Jan 2020 at 18:49
Leila, this is a fantastic result, it seems today is a good day for a number of members. As long as his PSA stays below 2.0 you can breathe easy, and at the minute you are a long way below that πŸ‘
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2020 at 18:56

Thanks Lyn, a good day for us! I do hope you are keeping those thigh boots well polished. If I’d mentioned this to David he’d have to lie in a darkened room with a cold flannel on his head. Meanwhile keep those wonderful supportive, and funny posts coming please do.πŸ€“πŸ˜Ž

User
Posted 06 Jan 2020 at 19:04

Originally Posted by: Online Community Member

If I’d mentioned this to David he’d have to lie in a darkened room with a cold flannel on his head. 

John would be horrified if he knew what I have written on here over the years 😬

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

User
Posted 06 Jan 2020 at 19:07
Super news Leila. So happy for you and thanks for all your support x
User
Posted 06 Jan 2020 at 19:47
Great Leila, best to you both

Lyn have you got a blog somewhere..I love your humour

User
Posted 06 Jan 2020 at 20:02
David still has a prostate, albeit one which has been turned to mush by radiation, so a slow increase in PSA is entirely to be expected. I’m in the same boat myself having had EBRT 😁.

User
Posted 06 Jan 2020 at 20:49
Thank you for the posts, they mean a lot, living with this €$§€dy disease is one helluva ride, and not one I’d recommend to any one. You lads and lasses are a wonderful support that has carried me and β€˜im through a lots of tears and laughter. Long may it continue

Leila

User
Posted 06 Jan 2020 at 20:51

Thanks Leila for the post. I was also diagnosed G9T3 and have had very similar treatment to David. I'm having my last hormone injection in a few weeks, so I too will be on the slightly worrying journey you are currently on. I'm glad things are going so well for you. Keep posting it is very reassuring for a G9 person to hear ongoing good news. 

Dave

User
Posted 07 Jan 2020 at 10:29

I agree with Dave , It’s great to hear encouraging stories on here. I’m sure as treatments get better there will be more . I hope so.

I was G9T3 locally advanced with a PSA of 27 and had EBRT and Brachy plus HT. My last (ever) Prostap injection was October ‘19 after 2 years. This Friday I will be 12 weeks from then 😳😳. Wait till March for next PSA.

Leila I hope your journey back to some kind or normality continues as well as it has so far. Good luck. 

Phil

User
Posted 07 Jan 2020 at 11:37

Thanks for your responses, it’s good to hear from the exclusive  ‘G9’ club. David is a bit cheesed off with the rise, as he hoped it would settle at 0.2. As time goes on he will adjust to the new normal, and we will trundle along. Please keep posting as it’s good to share info.

Leila 

 

User
Posted 07 Jan 2020 at 11:50

Hi Leila. My consultants understudy tried to tell me my PSA wouldn’t rise after I finished HT . But of course it will for us with Prostates still inside ....I would presume to roughly where it would be normally ??? So I will not be worrying too much for a small rise from my current 0.07.

Phil

 

User
Posted 07 Jan 2020 at 12:38

I’m roughly in the same position as Phil and Dave, I am a G9 club member T2c.

PSA 38 on diagnosis, had 20 fractions EBRT August 2018 and last Triptorelin hormone therapy injection mid July 2019. At review early November 2019 my PSA was undetectable, or less than 0.1 as the NHS declares.

As I was on three monthly hormone therapy injections I therapy finished mid October 2019 which puts me about 10 weeks since the injection expired.

As I was on three monthly hormone therapy injections I therapy finished mid October 2019 which puts me about 10 weeks since the injection expired.

My next review is mid March this year when I will have a PSA and testosterone check. I had been living under the optimistic view that my test of throne would come back quicker mainly to stop the hot flushes, but reading comments on here I guess I should return to reality.

But just as when I was newly diagnosed when waiting was the worst part, I now return to that situation as I nervously await my review in March

User
Posted 07 Jan 2020 at 13:50

Hi Alan , yes I’m waiting on a March test too 😬... never ever want to go back on Prostap.

I’m sure we’ll be fine πŸ‘.

Phil

User
Posted 07 Jan 2020 at 14:19

At my last review the oncologist told me they would not allow my PSA to go above 2.0

By the time I get my review in March and reading on here about how slow testosterone comes back, I am expecting a PSA reading of 0.5 or less at my review.

Also the next reviews from March onwards will be very nervous waiting periods. But as to what the oncologist said that if my PSA goes above 2.0, as I had stopped hormone therapy at the 18 month point I would be suitable to restart the therapy again for another 18 months. I will deal with that situation should it arise, but going back onto hormone therapy again is going to require some real heart searching, do I really want to go back through all that again as I approach 70 years old?

it may be bravado to say “no way” now would I go back on hormone therapy, but should my PSA rise to a high level I suppose self-preservation will kick in, plus I will have to do but my wife of 47 years tells me😁

User
Posted 07 Jan 2020 at 14:25

Hi Phil, David saw an understudy last year. It was not good, he was bumptious verging on rude,discounted the written questions, and rushed us out of the room. We travel a long way to appts as we live rurally. David gets quite anxious before each encounter. Well this one was not good, it took me days to calm him down. I did an online feedback. David then had to see another consultant for something else, Egyptian lad, he was brilliant! We complimented him on his manner, communication skills and approach and it was delightful. I then spoke to him on Arabic which surprised him and made the day for us all as David was signed off with out needing his services again.
Sometimes just to be spoken to politely, listened to and communicated with like a person rather than an illness makes a difference.
In past lives I’ve worked with medics, and have despaired at their sometimes limited ability to talk to us average punters, yet I’ve also worked with some caring sensitive people who have made a positive impact. Such is life and the human being I suppose.some medics could be better at working with us and. realising we are not daft or dim, but sometimes worried, scared and emotionally frozen. Rant over πŸ€”πŸ€”

Leila

Edited by member 07 Jan 2020 at 14:36  | Reason: Not specified

User
Posted 07 Jan 2020 at 15:04

So true Leila. Was good that you saw another consultant who was understanding. Sometimes they see it so often that they don’t realise how worried we are despite what they tell us. We are not idiots.

Like Alan I’m pretty terrified of going back on HT especially being in the G9 club. But we can only lead our lives as normally as possible for as long as possible. So easy to say - not so easy to do....

At the moment I just want my brain back as I’ve been very lucky with the physical side effects. 

Phil

User
Posted 07 Jan 2020 at 15:42

I didn’t mention earlier about the mental issues that I have been going through to do with my memory. My consultant asked me at my post treatment review, if there were any other issues I was experiencing apart from my physical needs and I said well apart from getting very forgetful and difficulty finding the right word in a sentence, which is probably me getting old. She then told me very directly that the male brain loses mental acuity without testosterone and the lack of memory and fuzziness is a direct consequence of the hormone therapy, if I wasn’t like it before the HT
That is another reason why I am so very reluctant to resume hormone therapy. I asked if there was a chance my brain could return to normal once I have testosterone back in my system and she said everyone is different and it depended upon my age and physical condition.

 

Edited by member 07 Jan 2020 at 15:46  | Reason: Typo

User
Posted 07 Jan 2020 at 16:19

Disturbingly I just read an article on clinical studies in the US investigating the effect of LHRH HT on cognitive ability. There are conflicting views on US clinical studies compared to here in the UK, but the results below would figure in any future decision I make on long term HT

A test group of 62,000 men on HT for prostate cancer found that for short term HT there was an increased risk of 19% of Alzheimer’s or other degenerating cognitive disorders. This rose to 28% for men on long term therapy.

 

User
Posted 07 Jan 2020 at 16:21

Hi Alan. I don’t think that I have lost memory or fuzziness. On the contrary for some reason the HT caused me to remember some painful times from my early childhood. Things that I’d long ago buried, or thought I had. After the HT kicked in I had to deal with all that as I’d never dealt with it as a child. 2 years on and still finding it difficult even with a counsellor. Have you seen the Truth Project TV ad ? It’s very very good, and very real.

Flip side I also remember loads of good stuff from my childhood I’d buried along with the bad stuff and it’s caused me to reunite with some old school chums. Always a silver lining 😊.

Phil

User
Posted 07 Jan 2020 at 17:15
I felt as if my head was stuffed with cotton wool during my first few months on HT. I just couldn't think straight at all. Fortunately it gradually wore off.

Best wishes,

Chris

 
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