fed-up with side affects.

Hello Peter (peter4 ) 

Welcome to the group although I am so sorry to find you joining us. Don't worry about having a moan - chemical castration, oh sorry Hormone Therapy is nothing to laugh about! .

I've had 43 months of it with 2 to go (click on my name or avatar for details) and have had every side effect going and some that are not even listed. I know you are off it now but here's a few tips:

* Sage tablets cured my hot flushes.

* Walking the dog cured fatigue.

* I am now on Ozempic (the weight loss drug) after putting on 3.5 stone in 3 years.

* I am sure old age adds to some of my issues so any changes - have a word with the GP. Mine has sorted out some of my issues.

I try and look on the bright side - at least I am still here and to be honest I am feeling fitter by the day. It's a funny old world.

I hope the above helps - we are all here for you.

Best wishes - Brian.

These symptoms are all bang on common and are suffered by everyone.

the younger amongst us are able to bounce back really quickly where I am stuck with it forever.

I’m sure there are little things you can do in every way to help you with these irritations, that’s what they are.

All but the weight around the middle are doable where the band of fat is not so easy to budge without exercise and grub control for ages. But steroids or other medical issues will make it harder to do anything about…

So get your head straight. 

Decide what needs to be done first and which is the one that irritates you the most. Deal with this or these first.

The problem I have is that I’ve had so many stabs to the belly that I’m not going to loose the area of hardness for each stab. I had daily syringes for anticoagulants and three monthly for Zoladex HT so I’m devastated by the change and the mess I’m in.

But after a few months of ending the daily stabs I’m starting to get my head around the problem.

Result: I’m now worrying about enjoying myself in many other ways and I’ll concentrate on things that counselling and other therapy has given me to concentrate on as a matter of preference.

So I would get chatting to your mates and, if you can, get professional help.

I wish you luck

I know how you feel Peter.

I'm rapidly approaching 70, thought I was invincible (survived lung cancer in 2014).

Now my PC is incurable but treatable following recurrence in 2024 - had chemo and now on indefinite HT / darolutamide)

Fatigue an issue

Spare tyre round waist

Hips ache (as well as many other bits randomly)

Random lethargy 

Random hot flushes 

Also well pissed off

...But definitely better than the alternative. My distraction is spending half the year abroad with my OH (Europe / US in the sun) which will continue as long as we're able.

It's good to have a good moan now and then - and thanks for the opportunity to have one myself today, that's made me feel a little better.

Keep going Peter and come back here whenever you feel like it.

All the best,

Derek.

Hi Peter

Have you queried how long u are on HT for?

What were your original stats, PSA Gleeson etc 

Best wishes 

Steve 

I’m definitely with you on that Peter. I’ve always been relatively fit and active as well. 7th Zoladex LA implant is due in a few weeks. The last few days I’ve had trouble standing straight and starting to walk after getting up, but once moving it does ease off. Knees are aching at times and last week my legs felt like lead. Weight is also increasing and new trousers will soon be needed. Hot flushes come and go but, fortunately, my mood stays reasonably positive.

Although I have discussed stopping HT after 2 years instead of 3 with my wife, if this continues I may need to look deeper into that. I’m currently pushing through all these side-effects because, as you say, the alternative is no better and I want to give myself the best chance of a cure.

Just got back from a 5-mile walk along the front in Lanzarote. We’ve done it a few times but I’ve never had to stop for a rest before. I have today…

Hello Amplitude,

We came home from Lanzarote last Friday, the last few days weather was quite poor, I hope it's now picked up for you.

Where on the coast did you walk? We usually stay in Playa Blanca or Faro Park (approx. 3 miles apart via coast path) and frequently walk between the two - I also have to stop for a rest once along the route - disguised as a coffee stop.

Derek.

I would seriously suggest that you investigate the possibility of stopping the HT early.

I was told I would be on HT for 3 years (Gleason 9), this became 2½ years, then 2 years - before I had even started treatment. I had little in the way of unpleasant side effects (no hot flashes), for about 15 months, then all sorts of really unpleasant things started happening. I did a lot of trawling the web and found that there is quite a large body of opinion that HT is often administered for too long a period (Law of Diminishing Returns). This opinion was not based on individual opinions but on large studies of many prostate cancer sufferers - on one US study the largest number of patients studied was from the NHS (mentioned first in the "thanks to").

I went to my diagnostic team and floated my idea of stopping the HT early to them. I asked to stop after 18 months instead of 24. I was not "read the riot act" but only what the possible effects of doing so might be (as one would expect) - they then agreed saying that there was "minimal risk". My last HT dose was in mid Sept '25, I had a PSA test in mid Dec (0.01) and next one is planned in Jun - to see where I am. I do feel immeasurably better - and have already lost 17lbs of the weight that I couldn't stop gaining during the HT.

Everyone is different.............but it may be worth you floating the idea past your MDT, they might say OK !

thanks brian, 

as you say it's a funny old world, bloody hilarious !

mr amazon is bringing the sage tomorrow.

 thanks again peter

thanks derek, 

all the best to you

peter

Hello Peter (peter4 ) 

Happy days, I hope they work for you - I was filling a towel up every night in bed. After about a week on Sage Tablets they went and never came back - mind you I am still on them!!.

Do let us know how you get on.

Best wishes - Brian.