Extreme Fatigue

I would agree that the usual fatigue has not been a problem BUT as the hot weather has continued it has become much more pronounced.

Where I can usually "walk it off" a daytime nap seems to be compulsory.

Checking with the specialist is always right but don't set aside the obvious.

Hi Steve, thanks for your reply. Yes the hot weather makes a difference, we were in Italy for 4 weeks with temperatures in the high 30's and it was very noticeable how it affected not only me but my wife. 

This feels different as I normally do 10k+ steps a day without issues, since Saturday I'm struggling to do 1k/2k along with my legs feeling extremely heavy and the constant feeling of just wanting to sleep. It may or may not be down to the prostate treatment, my GP is arranging blood tests.

Quick update, I received the call from a CNS who suggested lowering the dose of Daralutamide to one tablet twice a day instead of two twice a day, however he said the same as one of the other prostate nurses when I asked about this earlier in the year and that is once you've reduced the dosage you can't increase it again. I'd already done some quick research and it seems this is incorrect but he was adamant about it. As there's no way I want to take that risk he then suggested I try and hold out until my next 12 week review at the hormone clinic. 

When I asked the oncologist in June if it was possible to have a break he said it was, however if I did that then he would have to reapply for funding to put me back on it and there was no guarantee it would be granted, which I found to say the least quite bizarre. My next hormone clinic appointment is early September and my 6 monthly oncologist appointment is early December, therefore it looks like I will have to wait and see

Hi Sprinter,

As you have noticed the hot weather making a difference, it may well be unrelated but are you drinking sufficient water.  Warm / hot weather with low humidity means that we should all be drinking a lot more water than normal.

Best Wishes

Brian 

Hi Brian, if I drink any more water there will definitely be a drought, seriously though I drink on average 3½ litres of water a day in normal weather and at the moment probably 5+ litres

Blimey, if I drank that much I would never leave the loo.

Hope you get things sorted soon. 

Haha, I've never suffered with that problem before or after diagnosis, hence it was a complete shock when I was diagnosed as I had none of the usual symptoms associated with prostate cancer 

Hello Sprinter ,

I'm also on triplet therapy, had chemo and started darolutamide 2024. On 5th chemo cycle I was told to stop darolutamide completely for 2 weeks due to escalating chemo side effects. I was able to resume 2 weeks later with no reapplication for funding, so suspect advice is indeed incorrect that you can't go straight back to full darotamide after a short reduction in dose.

I might be wrong saying this, but on the basis that your CNS approves temporary dose reduction, if it was me I'd reduce from 2 to 1 tablets anyway, and don't tell them, to see if it helps. Not medical advice. just common sense.

Like others I do suspect it might be weather related.

I hope you find a solution that suits you.

Derek.

Hi Derek, thanks for your reply, yes you were about 2/3 weeks ahead of me starting chemo and your blog gave me good information as too what to expect. I've been deliberating about just lowering the dose and from what I've read it shouldn't be an issue, I've no idea why the prostate nurses say you can't increase it