My Journey through HT and RT

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

Ian.

Well done Derek!

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

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

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

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

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

Well done, Decho, 

Enjoy your cruise.

JedSee.

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

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🤔🤔🤔🤔

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

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.

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?

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

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

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.