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My Journey through HT and RT

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User

Posted 24 Mar 2024 at 21:28

Originally Posted by: Online Community Member

Good for you, don't know you?, but have read a lot of your post.

Glad this long and arduous road for you has finally concluded.

Me, mine is just beginning, told I have contained PSC ?, offered Radio or Surg, still not sure?. Starting the long road of HT tomorrow, oh Dear not looking forward to that as I feel fine, of what I have heard its not good, my son in law is after my van, told him I,m not dead yet, haha. A journey ends and another begins I guess, all the best to you .

Thanks for that Robin and good luck on your journey. The HT has certainly been a bit of an ordeal for me but I’m still here and many men get through it without any problem. I have no idea why but I would really like to know🤷🏼‍♂️
I’m still determined to get through the last 3 months and this has given me the inspiration I needed…I just want to feel ‘the urge’ again, with a set of legs to enable me carry on with my life!

User

Posted 25 Mar 2024 at 00:19

Originally Posted by: Online Community Member

Robin, if you decide to have surgery, you won't stay on the hormone treatment so it won't be the long road you are imagining.

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

User

Posted 01 Apr 2024 at 16:01

GP appointment today about my hip issues. Not my normal GP but it IS Easter Monday. Anyway she was very thorough and has diagnosed me with Hip Bursitis. Arthritis ruled out because my movement and strength was good but she’s sending me for an X-ray to confirm. I think I had come to that conclusion anyway from Dr Google but it was good to have it confirmed. She’s given me stronger pain killers and referred me for physiotherapy…but there’s a very long waiting list so will go back to my own and pay privately. I found a very good YouTube video for exercises for Bursitis and what NOT to do! DO NOT CROSS YOUR LEGS!

PSA and Testosterone test tomorrow and then last🤞🤞🤞🤞 HT jab on Thursday…busy week but I can see light at the end of the tunnel😊

Edited by member 01 Apr 2024 at 16:04 | Reason: Not specified

User

Posted 04 Apr 2024 at 12:21

Yeah! I’ve made it!

PSA <0.1 (undetectable)
Testosterone <0.2….non existent🤣🤣🤣

I know Undetectable doesn’t really mean as much for us HT/RT guys but I really feel I’ve reached a magic milestone.😊

Last (ever🤞🤞🤞) HT Jab today and I can’t tell you how happy I am about that.

I must say Fife NHS is very well organised…I was told not to worry, they are not forgetting about me, I will get a letter every 3 months to remind me to get a PSA test and then a letter with the result. Going to be an anxious time every 3 months but I’m going to focus on getting my ‘body’ back.

A wee celebration drinkie tonight I think.

Thanks to everyone for their support on my journey, it’s been amazing and I will continue to be an active member of this forum.

User

Posted 04 Apr 2024 at 12:26

That's great news Derek! Really pleased for you.

Ian.

User

Posted 04 Apr 2024 at 12:37

Excellent news, time to celebrate.

User

Posted 04 Apr 2024 at 13:54

Well done Derek!

Wait until your libido fully returns. Your wife will have to try and sleep with one eye open.😁

User

Posted 04 Apr 2024 at 14:57

Great result Derek!

You've certainly earned that celebratory drink.

Kev.

User

Posted 04 Apr 2024 at 15:46

Fab news- start of the journey back to less aches and pains and away from hormone hell. Kate

User

Posted 04 Apr 2024 at 19:16

Excellent news for you Deco. Enjoy your celebration drinks

Cheers

Bill

User

Posted 04 Apr 2024 at 19:39

Get on it Derek. You only live once ! Congrats 🙌

User

Posted 03 May 2024 at 19:28

Just a quick update….following a hip X-ray 2 weeks ago I went to the GP surgery today to get my results. Apparently I’ve been diagnosed with mild Osteoarthritis. The doc has put me down for Physio but there’s a long waiting list and I’m not sure what else I can do in the meantime to help with the symptoms. I’m also not sure if this is related to the Bursitis that I was diagnosed with before the X-ray. I need to find out what else I can do to relieve the pain and improve my mobility so am going to make an appointment with my private Physio, hopefully next week.

I never had these issues before starting HT😟

User

Posted 31 May 2024 at 16:46

Hi Derek

Haven't posted for a while. Pleased to hear you are over the hump and getting on the path to normality. Have a large malt!

Am awaiting my next 6 mo psa / testosterone check ( july). Let's hope it's still low. It would be a b-----ger if I had a recurrence on top of the myeloma!

Am on 5 cycle of chemo for that but had a few days in hospital caused by a chest infection and collapsed left lung. OK now I hope but 24 hrs waiting in A and E was an eye opener!

Haematologist optimistic about a remission, we wiilcross thatbridge when I come to it.

I suppose ishould now move to the myeloma website but having had so much information and support from you all I shall keep In touch pending my next psa test!

It seems as if our diagnosis and treatment were quite similar in many repects so look after yourself

Peternigel

User

Posted 31 May 2024 at 17:06

Originally Posted by: Online Community Member

Am on 5 cycle of chemo for that but had a few days in hospital caused by a chest infection and collapsed left lung.

Bloomin eck mate, all this and myeloma! You're having a run of bad luck. Hope everything gets sorted. Best of luck.

User

Posted 02 Jun 2024 at 10:22

Hi Peternigel,

Sorry for not replying sooner but I’ve been away in Fuerteventura for the last 3 weeks and not so active on here.

I hope your PSA result is good and sorry to hear about your myeloma, I hope you get it sorted. Life can just be so cruel at times. A close friend of mine who I met at Maggies and was on the same PCa route as me got through his RT/HT fine and was immediately undetectable after RT. He was so happy but had to go into hospital back in January to have a couple of aneurysms repaired. His kidneys were damaged during the Op and he also had a spinal stroke. He never recovered and sadly passed away at the end of April. It really affected me badly as we enjoyed many lunches together and we had formed a close bond…..we were both just on the same ‘wavelength’😊. We had lunch the day before he went into hospital at our favourite cafe by the beach, and I gave him a hug and wished him good luck. I will remember that day forever.

I’m doing ok at the moment counting down the days until Independence Day on 4th July when I will be free of Prostap. I’m not expecting miracles of recovery but hopefully slowly my aching and dysfunctional body will recover. Then of course we have the anxiety of ‘Will my PSA start to rise as my testosterone recovers?’. I really don’t know how I would have coped without the support of everyone on here, all my friends at Maggies…and Sertraline, which has kept me on an even keel during the anxious moments.

Good luck for the future Peternigel and please keep us posted of your progress.

Derek

User

Posted 04 Jul 2024 at 09:09

Independence Day! How appropriate😊 The end of Prostap….hopefully forever. I had my last Prostap injection 13 weeks ago and a reminder popped up on my phone today which should have been my next jab. However Onco is happy for me to stop HT after 2 years as my PSA has remained at <0.1.

It’s a great feeling and going out for lunch with 2 of my friends from Maggies, who have helped me through this journey, as has everyone on this forum. Thanks to all of you🙏

Now I’m just looking forward to slowly getting my male body back, not that it was much to shout about anyway🤣🤣🤣🤣, but it’s going to be interesting just to see how things change over the next few months.

User

Posted 04 Jul 2024 at 15:41

That's great news Derek. I can't believe its been 2 years! how time flies.

Hope you all enjoyed the celebratory lunch and congratulations.

Ray

User

Posted 04 Jul 2024 at 17:54

Good for you Derek, that’s great news!

User

Posted 04 Jul 2024 at 20:37

Great news Derek. Glad you voted for the Just Stop HT Party 😆

User

Posted 04 Aug 2024 at 09:21

Well, it’s the 4th August, 1 month since I stopped HT so thought it’s worth an update.

I’m definitely feeling better, not sure how much of that is down to the fact that I know I have finished the ‘poison’. I’m definitely less fatigued and got some of my mojo back. My hips and Achilles are still giving me problems at times. But I am finding the more I exercise the better…my physio gave me some very good exercises for my hips which help enormously, but if I stop doing them for a couple of days they start to get sore again. I still get hot flashes but I think they are slowly getting less frequent and severe. As far as the bedroom department goes, we’ve always managed to have a bit of fun during HT, even though I don’t have any urge to, and that hasn’t really changed much but I know it’s early days. I long to feel that urge again😊

Weight gain has been a real problem for me, I’ve put on 8kg since starting HT and am trying very hard to lose some of it before I go on a weeks cruise on the 14th. I just need to look at a scone and I put on a kilo😩

Im still having fun and going on lots of holidays and really looking forward to the future. My next PSA is end of September and I have an Onco appointment on the 2nd October. I know I’m going to be up to really uptight for these but will just try and keep myself as busy as possible to stop thinking the worst.

I’ll update again in a month, all the best to everyone on their journeys.

User

Posted 04 Aug 2024 at 10:25

Great news Derek, keep out of the buffet on your cruise.

User

Posted 05 Aug 2024 at 00:50

Originally Posted by: Online Community Member

Weight gain has been a real problem for me, I’ve put on 8kg since starting HT

Don't panic Derek! At one stage I put on 9kg and I just couldn't keep it down on HT despite trying various tricks. Now, ~18 months after the Z had worn off, I'm back to normal, even a bit below normal but I did lose some muscle mass during HT. Exercising and physical stuff in general is much more enjoyable so I think even the muscle mass is on its way back.

Maybe a few laps of the deck for every scone?

Jules

User

Posted 05 Aug 2024 at 21:30

Well done, Decho,

Enjoy your cruise.

JedSee.

User

Posted 04 Sep 2024 at 08:58

Well, exactly 2 months since PRAT(Prostap Removed And Terminated😊) day, so I thought it would be worth an update on side effects.

Joint Pain….working hard with daily exercises that my Physio gave me…slow improvement. My neck has given me problems…I keep tweaking my neck so am doing neck strengthening exercises as well.

Hot Flushes….Improving steadily, less frequent and less severe. Night sweats also much better!

Energy Levels…getting better by the day, and I’m much more motivated. I would say they’re back to the levels they were at before starting RT. Went back to gym on Monday after long summer(Ha! Ha!) break and enjoyed it. Strength has not deteriorated since I was last there given the weights I could lift. Did a 37 mile ebike ride yesterday and felt great after it.

Brain Fog and memory loss…I think this is much better. I went to pay my credit card yesterday, went online to see how much it was and then went into my online banking. I could actually remember how much it was I had to pay!

ED…Peyronie’s disease has deformed my manhood to look like an hour glass. I looked down one day recently and felt so sad. I’m working (it!) hard to try and straighten things out. Got to keep pumping!

Libido…I feel different. The idea of penetrative or oral sex kind of repulsed me before, now it doesn’t. Just recently I’ve been wakening up with a semi. I still don’t feel the urge but it’s early days yet.

Mood…I’ve had some down days recently and some temper tantrums….must be going into puberty again🤣🤣🤣 I’m feeling much more positive and alive ATM, long may it continue. I’m staying on Sertraline until my testosterone has returned and then will gradually come off it.

Weight…My peak weight coming back from the cruise 2 weeks ago was 104.6kg. I’m now down to 101.1kg and trying to get below 100 soon🤞

My next PSA and Testosterone test is on the 24th September and then Onco appointment on 2nd October. I’ve been looking at Andy62’s chart and it’s fascinating, I’m going to do something similar. I’m quite excited if a little anxious about it.

Next update beginning of October after I’ve seen the Onco😊

All the best to everyone on here going through this ordeal and thanks for your continuing support, it means so much!

User

Posted 09 Sep 2024 at 19:47

Hi Decho,

Thanks for posting this update, Interesting to read the impact after 2 months off it. Seems that you are experiencing some welcome signs of rehabilitation. It’s encouraging to be able to see some light at the end of this miserable tunnel.

I’m just over a year on Prostap and it is doing my head in. Don’t like to wish my life away but I can’t wait until all this is over. One relatively recent phenomenon that I’m experiencing and has occurred 2-3 times is where my energy levels crash to the point where I need sleep to recover (just the same as when I was on chemo 🙁). I think this is related to drink as it seems to occur on days following getting pi$$ed. However, the impact is more than a simple hangover. I thought I was ok having a drink whilst on Prostap, maybe not 🤔.

Hope your return to normality continues with pace,

cheers

Spongebob

User

Posted 09 Sep 2024 at 20:57

Hi SpongeBob,

Im sorry that Prostap is doing this to you…it really is awful stuff and I’m glad I’m off it, for now anyway. I find that the more active I am, the better my energy levels are, and now that I’ve finished the poison I am much more motivated. I did a 48 mile circular tour of the the Forth today on my ebike and came back feeling energised. That was my goal for this year. My BIG goal though is to be fit enough and strong enough to take my grandsons skiing.

I find that alcohol makes my flushes worse. I don’t drink all that much but do like a couple of malts and some wine at the weekends.

What is REALLY missing here is more support for those of us going through up to 3 years of this treatment.

I wouldn’t stay on Prostap ONE minute longer than absolutely necessary if I was you….2 years was way more than enough for me!

All the best to you and everyone else going through this.

Derek

User

Posted 26 Sep 2024 at 16:00

PSA and Testosterone result came back today.

PSA < 0.1 (undetectable) 😊

Testosterone < 0.2 (undetectable) 😩

So that’s 6 months since I last had a Prostap jab and my readings are exactly the same🤣🤣🤣

The CNS thinks my testosterone should start to recover soon 🤞 Can’t wait for that😊

these results are interesting to me because I still have no Testosterone but I feel so much better and side effects are far better too…seems to suggest to me that it’s the Prostap that’s the cause of the side effects, rather than the lack of Testosterone🤔🤔🤔🤔

User

Posted 26 Sep 2024 at 20:25

Great results Derek, keep going pal.

User

Posted 26 Sep 2024 at 21:20

My last Zoladex injection was Feb 2020 by November 20 my testosterone was 1.2 by April 2021 it was 17.6 It does not recover for a long time but then it seems to rise up rapidly.

Occasionally we have posts about whether someone can delay a HT injection by a week for a holiday. I have to say considering how long it takes for testosterone to recover it surprises me how precise the labeling is about dose frequency.

It is interesting that your side effects seem not to be related to lack of testosterone. I guess placebo (or nocebo) could be the cause.

Good news on the PSA, and hopefully good news soon on the testosterone.

Edited by member 27 Sep 2024 at 01:11 | Reason: Not specified

Dave

User

Posted 26 Sep 2024 at 21:44

Hi Dave,

Interesting Perspective and I look forward to some testosterone in the first half of next year.🤞🤞🤞

I did wonder if it could be a placebo effect. I know I have gradually felt better since stopping HT and my energy levels have increased to pre RT level. I’m also working a lot harder at improving my physical condition because I’m much more motivated.

But other things have improved too

Hot flushes……much better
Insomnia…..gone
anxiety…won’t know until I’ve stopped taking sertraline
Brain fog…much better
agitation and restless legs…gone

Things that haven’t improved…

Libido,
ED…only partial but pumping nightly to try and correct the Peyronie’s.
Weight gain, although I’m working on that

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

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