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My Journey through HT and RT

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User

Posted 05 Oct 2024 at 01:12

Only just found the forum and have caught up with your story - I am a few months behind you but have a similar tale. My last Prostap injection will be February 2025 - cannot wait to stop.

Just wanted to thank you for sharing - its been a help to me, and I think probably a lot of others, and I am so pleased to hear about your recovery, albeit with some issues still to crack.

User

Posted 05 Oct 2024 at 10:13

Hi Steve,

I’m sorry you’ve only just found this forum because it has a wealth of information, but glad you found reading my journey helpful, it makes it all worthwhile😊

Its very interesting that your are on a similar path (from reading your bio) although your PSA was a lot less than mine at 36.

Im glad your able to stop HT after 2 years as I don’t think there’s any point in longer than that, and effects are cumulative from what I can see…I certainly got worse with the joint ache issues.

As I said I’m pushing myself as hard as I can to get my physical side back, I’m on holiday in Fuerteventura ATM and walked 20k steps. It’s when I stop the exercising that I can feel my joints more.

I would also ask your GP if he’s happy to give you a testosterone test at the same time as your PSA test to measure them. We can compare notes😊

Good luck with your recovery and if you have any questions please don’t hesitate to contact me.

All the best,

Derek

User

Posted 08 Oct 2024 at 23:18

Thanks, Derek

I've never had a testorone test - hospital just sends me for PSA every six months. I'll ask at my next appointment.

Best wishes

Steve.

User

Posted 20 Nov 2024 at 19:18

Today marked another milestone for me. First meeting with my Oncologist for over a year and he’s happy with my progress. He’s dismissed me from his clutches unless my PSA reaches 2…I thanked him for his efforts and said I hope I never see him again! he even managed a wee chuckle….he’s not the most personable person Ive met even though he IS a good Oncologist. We discussed the fact that I ended my treatment early but he didn’t have an issue with it as my as my PSA was undetectable. He said he is expecting my testosterone to return I. The near future…time to start worrying?

since my last update things have been a bit mixed. I went to our place in Fuerteventura for October. Normally this is my place of sanctuary and chill, but this time I felt really flat, even quite down at times. Even mojitos didn’t seem to work as well as the past! There’s a lot going on in our Community out there where we have our place, which didn’t help but I think I had kind of reached a plateau in my recovery and just thought ‘when’s this going to get better?’. And something else…I think I was missing all my friends from Maggies….that may sound weird but I really have formed some close bonds with men (and women) on their cancer journey and I missed their company and support, it has meant so much to me. Anyway since coming back I have felt much better…I have to go back out next Thursday for some Community issues and can’t wait to get back to the heat!

Since coming back I have felt so much better, got my mojo back. My joints are definitely getting better day by day, sweats are getting better too.My Libido still hasn’t returned although I do feel a bit more interested…if you know what I mean?

One of my friends from Maggies died last week…he was stage 4 and none of the treatments seem to work for him. he was quite young and these things get to you. We had a good chat about it at the men’s group last Friday and that helped. it’s his funeral next Tuesday and I’m going to go to it. Facing your own mortality can be difficult at times.

Now…Chris Hoy…you’ve got a lot to answer for with your ‘if there’s something you’re planning for the future, JUST DO IT NOW’. I was planning cruises but the OH had other ideas…..get the bedroom decorated…NOW!🤣🤣🤣 So I’m doing that, lots of cursing and swearing but just achieving little things like painting the ceiling does make you feel a sense of achievement.

So, all in all, is been a mixed period for me but I’m watching Glenn Campbell documentary ‘Living with my Brain Tumour’ ATM and it does kind of put things into perspective.

Next PSA end of December so let’s see what that brings.

Best of luck ti everyone on their journeys!

Edited by member 20 Nov 2024 at 19:22 | Reason: Not specified

User

Posted 20 Nov 2024 at 20:16

Well done Decho - I've got my 6 monthly PSA test on Saturday. It always tenses me up a bit, hope it's OK.
Wildlife seem to have it in for me at the moment - First a Heron ate all 5 goldfish from my pond, then A Deer smashed into the side of my car - giving me an expensive repair. Whatever next?

User

Posted 21 Nov 2024 at 01:23

That’s great news Decho! So happy for you! I can understand your feeling a bit down, but I’m guessing it’s just part of coming to terms with the next chapter. You’re always very supportive and caring of everyone on this forum, and I’m absolutely delighted that things are going your way, particularly with the effects of the HT largely wearing off. All the very best wishes to you, your wife and your family. 💕x

User

Posted 21 Nov 2024 at 08:34

H Decho,

Good news on your milestone.

I remember that feeling of feeling flat when I was a few weeks post surgery. Despite a holiday in the sun I slipped into a pretty dark place. The expected euphoria of "beating cancer" never materialised, just the drudgery of work sleep and ED.

I suppose we don't realise is what huge ordeal it is that we go through battling our disease, and once through the other side, our heads are still spinning.

It's good to hear that you've got such a great support network at Maggies, hopefully your friends there will help you reset.

P.S. We're flying to Fuerteventura on Friday 13th for a short break and winter sun, so the DIY can do one for a few days.

Good luck.

Kev.

Edited by member 21 Nov 2024 at 08:41 | Reason: Added note

User

Posted 21 Nov 2024 at 08:35

Great news about the Onco not wanting to see you again Derek!

Sorry to hear about your pal from Maggies, that must be tough. It's interesting to read that you are still feeling a bit flat at times. I thought I was wallowing in my own self pity a bit, as I am still struggling to feel positive about life, 4 months after surgery, so It's reassuring (in the nicest possible way) to know that others are in the same boat.

Good luck with your test at the end of Dec. My next one is on Fri 13th of all days 🙄

Ian.

User

Posted 21 Nov 2024 at 17:08

Hi Decho,

Chin up 😬. I’m not sure that decorating the bedroom is such a good remedy for feeling flat 🤔. Yet I do feel your decorating frustration as I am currently stuck in the never ending task of decorating our dining room, which also involved getting wood chip off the ceiling 😠.
I’m really hoping that you can soon report some good news in terms of recovery from the ravages of Prostap. I’m looking for some glimpse of light at the end of the tunnel to grasp on to. I’m approaching 18 months on the stuff and it is really wearing me down. It’s hard trying to do normal things, it’s hard to appear normal with other people, everything is increasingly difficult. The balls of my feet are killing me off - think it must be a comical sight for anyone watching me shuffling about the house (fortunately, it doesn’t stop me walking dogs etc - yet!). My legs are now starting to hurt aswell making it even harder to sleep. Sleep such as it is, waking up every 2 hours swimming in sweat. Feeling weak, knackered all the time, and hot sweats every 2 hours along with every other possible side effect such as loss of labido- marvellous, isn’t it? I finding all this an increasingly serious challenge.

My RT finished in March and I think I’ve been cast out into the wilderness because there’s not been a peep out of anyone at the NHS. There was supposed to be a follow up meeting with the Urology consultant along with a PSA test in September but nothing. When I chased it up I was told that there is a backlog, and that I’d be lucky if it was arranged anytime before Jan 2025. I just wonder how many other poor Sods are on this backlog list. Anyway, I still arranged the PSA test, they might be too busy to assess it but I still wanted to know.

Given that my PCa was Chemo’d, then blasted by brachy followed by 20x EBRT, I think I might have lost my way in understanding the plan a bit as I wonder more and more why there is a need for me to be chemically castrated for 3 years.

Anyway, chin up, we are on a curative path and it must be good to spend so much time in sunny climes especially at this time of year.

All the best

Spongebob

User

Posted 22 Nov 2024 at 14:24

Nice post Decho.

I was reading about Doom Scrolling this morning. A new term is good click bait.

So it's about scrolling through doom laden web content and is said to take you down a spiral. I can see some truth in that. So maybe a trip on the booster spiral is a good thing. A walk up Mt Teide perhaps. All the best Peter

User

Posted 22 Nov 2024 at 19:21

Sponegbob, I find that rather sad, maybe Scotland is better? I can’t fault my treatment. I saw my Onco a few months after finishing RT and was then was due to see him last month, but was away so after checking, he was happy to postpone. i get a letter every 3 months telling me to go to my GP and get a PSA teat, and then I get another letter with the result. So, I dont in anyway feel abandoned. The only thing I would say is that the support of anyone going through HT is sadly lacking.…it feels like a case of ‘just suck it up…it’s making you better’. True, it is but QOL is so important and I think with some effort the journey of those on HT could be so much easier. Andy62 is of the opinion that exercise should be mandatory and I kind of agree with that, but I think it’s quite specialised, the needs of those on this treatment needs care and guidance of what can ease their side-effects.

And to this day, I still haven’t found any research into why some men get off lightly, yet other men really struggle with this treatment.

User

Posted 29 Nov 2024 at 01:13

Hi Decho

I am pleased to read the good news about your recovery and that you are seeing the side effects from the hormone therapy starting to reduce - be good to see them gone altogether.

I have been moved onto a telephone monitoring system now too, though still on hormone therapy - think the consultant was stretched and considered me stable enough to move to the different regime. I'm choosing to see that as a positive.

I am sorry to hear about your friend, that can't be easy, though you seem to be well supported by the network you have established at Maggies.

Your point about QoL is well made - when I started hormone therapy I was just grateful to have an effective treatment (and I still am) but I didn't understand just what a slog it was going to be and in my less generous moments get angry that the medics did not better explain what I was in for. I am close to the end of two years on HT and the side effects are becoming more severe, especially fatigue. But not long to go and it is proving to be an effective treatment for me.

Good luck with your December test.

User

Posted 30 Nov 2024 at 05:53

Hi Decho,

I’m so pleased on the good news and long may it continue. I’m new to the club 😔and to the forum and just wanted to say thank you for writing about your journey. Being at the start of this is quite scary but being able to read through has helped me answer a lot of questions. Thank you so much.

Good luck for December and onwards

SP

User

Posted 10 Jan 2025 at 16:44

My Testosterone is Back!

Latest tests: PSA <0.1. 😊 Testosterone 0.59(up from <0.2…undetectable)

Welcome back Big T….I know it’s only a little but at least it’s going in the right direction….and my wife keeps pointing out the glistening hairs on my legs🤣🤣🤣🤣 We’re in sunny Fuerteventura BTW😎

Im sorry I’ve not been active on the forum recently but got so much going on out here with our property, it’s rather consumed me.

I hope everyone is doing ok!

Edited by member 10 Jan 2025 at 20:50 | Reason: Not specified

User

Posted 10 Jan 2025 at 17:03

Glad your restults are good and going the right way.

I have 2 more degarelix monthly injections to complete 2 years ( may not have the last one ).

Started on Prostap but testosterone only went to 1 so was changed to Degarelix and latest result was PSA 0.05 and Testosterone still 1 , hoping my T comes back strongly after my last injection .

I find QOL far worse on Degarelix than Prostap , sleeping is worse and occasional bed wetting, Degarelix is the work of the devil for me .

best wishes

Mike

User

Posted 10 Jan 2025 at 17:27

Originally Posted by: Online Community Member

It’s Back!

Derek!

Never, never, ever! Start a post with "It's back" on cancer forum. I nearly put my back out reaching or a box of tissues!

😁

User

Posted 10 Jan 2025 at 17:41

I agree, Adrian!! My heart sank when I saw that too!!! 🤣🤣. Absolutely delighted for you Derek, even if you did momentarily spoil my day!! 😂. Have a great time in the sunshine, celebrating The Beginning of Return of T!! 👍🏻💕

User

Posted 10 Jan 2025 at 19:24

Excellent news Derek!

We were in fuerteventura just before Xmas, had an interesting drive through a calima up to the airport from Costa Calma.

Salud!

Kev.

User

Posted 10 Jan 2025 at 20:48

OMG! Sorry everyone for scaring you…I was so excited when I got my T results back….and as I said I’ve been away for a while! I’ve changed the heading🤣🤣
Actually this test wasnt NHS, they said they would test it but obviously forgot, so I got it done locally in Fuerteventura for 25€. It was Eurofins (same that was used during COVID) so quite confident it’s accurate.
I was on cloud 9 until I heard that another of my Maggies friends(not PCa) sadly passed away on 22nd December. Poor guy, only in his 40’s but so positive. He knew his time was limited but it was quite a shock, That’s 3 friends in Maggies I have lost in the last 12 months and you might ask why I still go? Well, the answer is that I have gained so much from the support I get from the guys and girls I’ve met in Maggies..they are the best friends you could wish for…and they just UNDERSTAND!

Edited by member 10 Jan 2025 at 20:51 | Reason: Not specified

User

Posted 10 Jan 2025 at 21:01

Originally Posted by: Online Community Member

Glad your restults are good and going the right way.

I have 2 more degarelix monthly injections to complete 2 years ( may not have the last one ).

Started on Prostap but testosterone only went to 1 so was changed to Degarelix and latest result was PSA 0.05 and Testosterone still 1 , hoping my T comes back strongly after my last injection .

I find QOL far worse on Degarelix than Prostap , sleeping is worse and occasional bed wetting, Degarelix is the work of the devil for me .

best wishes

Mike

Think you need to be patient Mike…my last injection was in April. It’s quite scary that you find QOL worse on degarelux than Prostap…I found Prostap awful. However everyone reacts differently to these drugs so nothing surprises me. The good news is that although my T is just coming back, I started to feel better as soon as the last injection wore off..and that was 6 months ago.

the other thing I’ve noticed is morning wood has returned….Still suffering from the after effects of Peyronie’s and shrinkage but it’s a nice feeling to wake up with an erection, even though it’s deformed!

Good luck at getting finished on the poison as soon as your team are happy for you to do so.

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