Hot legs

Hi

So sorry to hear about your struggle and pain, I am in the same boat almost, my Gleason score is 7 (3+4) I am not on any medication yet but I have the problems with my legs heating up and very itchy at night one thing I used and it seems to work hand sanitising gel, I used it out of desperation, I know it's easy to say have faith and stay Positive but Positive does not change facts or the reality of life, like you I find it hard to talk about it especially with my wife. May I ask has your Gleason score always been that high? I really worry about having another biopsy as I was first diagnosed when I was living and working abroad, I remember the pain was unbearable, on my return to the UK I am having to go through the same process again for insurance reasons to claim for critical illness. At first I was refused on the understanding that I have to be living in the UK to stand the chance to apply for it and now I am waiting to see if the tumour has spread if it's non invasive and contained I won't get anything I find it so hard to accept knowing that I have been paying for critical illness which doesn't even come close to cover prostate cancer it's like adding insult to injury I know money is not everything I would rather be healthy than have money.

I wish you the best and Hang in there.

Thanks for your support incredible 1 it’s reassuring to know I’m not alone  yes gleason score was that when I was diagnosed back in January, I’ll try the hand sanitizer I’ll try anything once! Has your cancer spread if you don’t mind me asking ? Mine has spread to nymph noads and seminal vestiges and is very aggressive surgery is out of the question.  Fortunately or unfortunately I don’t have c/i insurance I would hate to think I had paid all those premiums and not be able to get a penny, as you say money is not everything but it’s great to know you have it when it’s needed, that’s insurance companies for you they are quick enough at putting the premiums up but when they have to pay out it’s surprising how fast they put the brakes on. Like you I have difficulty talking about it even with my wife I love her dearly but she keeps saying it will get better, I have a hard job believing her. I mean how do you replace a strangled urether, I have no bladder control only empty the leg bag when it drags round my well cooked ankle. As you have probably been told a million times  stay positive think positive, these people won’t try my shoes or yours for size, they don’t realise how hard it is. 
Anyway as you say hang in there, I wish you every success and good health my friend, feel free to keep in touch anytime. K/F

I guess I should consider myself fortunate when I read of the struggle many have with this damn disease. My cancer caught early and I decided to have prostatectomy that hopefully has got it in one ! My struggle is mentally with the feeling of loss of masculinity but hopefully when all has settled down I will find some pleasure again. There's  no shame in shedding tears and think that it's a good thing to let the grief out . Just hang on in there and keep talking cause your not alone my friend. 

Hi

Here we will try and help you best we can, sorry your going through all this, it’s difficult, as many on here will tell you. I have the same leg trouble at night, but take nothing for it, as an insomniac I toss and turn anyway, more to my wife’s distress. As a Gleason 9/10 things can improve nearly five years tells me that, and my PC had spread to my bones.

Hormone treatment drains you and fatigue is one of the problems, but you do get used to it, it just takes time be positive, try not to dwell on what’s happening, I know it’s hard but not thinking about it helps. Just take each day as it comes, you will have bad ones but good as well, so keep talking to us, if we can help more we will.

stay safe

Joe

Hi I'm sorry you are suffering so badly .I am on hormone therapy along with Enzalutimide and suffer with itchy ,hot ,restless legs.However the very helpful nurses in the oncology department gave me a very good treatment ,it's a menthol cooling cream made up by the hospital pharmacy it comes in a very large pot lasts  for ages it's called ARJUN cream .You slather it all over your legs before you go bed it calms and cools them and I can sleep .It's wonderful stuff ask your oncologist if they can get some for you .Hope they can help you I had a prostectomy in February  2020 didn't clear it all it had spread to some local lymph nodes and I needed Radio therapy full course of 66gys over 6 weeks .I was put on the hormone therapy for six months before the RT along with Enzalutimide my PSA fell like a stone and after 4 weeks went from 28 to undetectable where it has remained for the past year .The side effects of hormone treatment are nasty the mood swings ,hot flashes ,aches and pains all over BUT it's working so I'm getting on with it keeping active and positive .I hope you can get some of that cream it's helped me greatly .

Thanks for this useful information, I don’t know if I’m getting used to the injections or what. I do still get the heat at night but I have had to sleep in the spare room as its a lot cooler. I have recently been in hospital and after a gyroscope they found  a tumour in my bladder which they now plan to remove on 24th June, I was due to see my oncologist on  the 23 rd this has been postponed until Monday 29th July this is not the first time my appointments have been cancelled. 
when I was taken into hospital two weeks ago I was told by the A&E consultant that my CT scans didn’t match and that my lymph node were swollen and compressing my oesophagus. On first diagnosis the cancer was only in my pelvic lymph glands. 

You are having a bad time of it so sorry to hear you have a bladder problem  .I had bladder cancer too, non invasive but they are keeping an eye on me and so far so good been five years since I was diagnosed .I wish you well and hope things improve for you .There are many people on this forum who can help and support you .Your not alone !

Thank you so much for your support