Enzalutamide causing pain??

Thought i would come and say hello and let you know the latest on my dad.

He is still in hospital but still up and down. They don't seam to be able to get the right balance for his pain relief. He gets too confused and hallucinating on strong pain relief but isn't in pain but they have dropped the dose to stop the hallucinating and confusion but now he is in a lot of pain. Especially at night. Not sure which way I prefer to see him. Hate seeing him in pain. My mum is pushing for for him to come home which I'm not sure about. She was hoping for tomorrow but they said it definitely won't be tomorrow because they need to try and sort out his pain.

The Dr has said he is happy for him to continue on the enzalutanide to try and keep the cancer at bay. Although my mum is extremely happy about this, I feel sad about that too. All that will do is prolong the pain that my dad is in. As much as I hate to refer my amazing dad to a dog but if he was a dog we would be done for cruelty. Why does this have to be so painful and difficult??

Would be happy for anybody's thoughts on this. I just feel so desperately sad and alone at the monent. I'm not alone, I have a husband 3 children, my mum and amazing friends, aunts uncles, cousins. So I am far from it but I feel alone x

I echo Sandra's words and will add a few of my own.

Right now you will be going through so many emotions that they all start to run into each other. Feeling that you are alone even when you are surrounded by people is something I still get. No matter how hard I try I just think nobody "gets" me in that particular moment. It does pass and I know many other people who also feel this way so it is a common thing.

You are almost certainly beginning to grieve for your Dad, this is because you have accepted the inevitable so it is also absolutely normal, you really do not want to see your lovely Dad in pain or suffering and are worried that continuing the Enzalutamide will just prolong his suffering.

You sound as though you wish he could just slip away peacefully, but then you might also struggle for feling that way . Please do not be afriad of these feelings it is because you love him deeply that you simply cannot rationlaise or deal with this huge conflict of emotions.

You are also right, that old saying about shooting horses does make us think that we are so cruel to allow our own loved ones to suffer so much.

Your Mum will be going through her own and likely different emotions so you will both need to just bear with each other as best as you can to provide as much support as ever for your Dad. In time those emotions will become the same for you both and it will be easier for you to then support each other.

We are all here for you if you need to share your own personal pain and anguish.

Thinking of you

xx

Mo

I think the but I am really struggling with is nobody has actually told us what is happening. We know the cancer is getting worse and has got bad in his prostate his pelvis and is pressing on his spinal cord. We also know that it has spread to his skull.

My mum has it in her bras that my dad could still be around in another couple of years. Nobody has actually told us otherwise so I don't blame her for being optimistic. I think realistically we both know that isn't going to be the case but how long liky has he got?? Surely people know roughly what time of life expectancy he has once the cancer gets to these places. I know not everyone likes to know, my mum especially but I do need to know so I can kind of get it right in my own head and try and come up with a way of dealing with it. If that's at all possible xx

have the hospital got a Macmillan nurse that you can talk to, your Dad or your Mum may have to let them know it is OK to talk with you as there is only so much they can share without that consent. The nurse will have a good idea of how your Dad's future lies but bear two things in mind, firstly, it is impossible for anyone to give you an accurate prognosis as this disease works behind its own doors, ones that you cannot see past so if they give you a time frame it will be non specific. Secondly once you know you will have to keep that information to yourself as it would be wrong to let it slip to your Mum or worse still to your Dad if they really do not want to know.

If you cannot get to speak to a Macmillan or Marie Curie nurse or similar you could try to have a private word with the Hospital consultant and ask him for some answers to your questions. All of the above would still apply.

One thing I find a tiny bit hard to understand is that the Consultant is going to continue with Enzalutamide, that would suggest to me that he believes your Dad is still in Palliative care rather than end of life care. These drugs are really expensive and hard to get so would not be given if there was no purpose.

I do sympathise and totally agree that you need some answers to your questions so that you can manage your own emotions and find your own way of dealing with what is to come. Right now you are in limbo and dealing with that is so hard.

thinking of you

xx

Mo

They are arranging to get quite a bit of help at home, they will have carers go in at least 4 times a day to start with and go from there. theu have got him a Zimmer frame to help him but he's been in bed for nearly 4 weeks now. He doesn't have a lot of control with his bowel either. Not sure if that's because the cancer of his prostate is pressing on his Bowel or the compression of his spine or the medication. I don't know.

I think the best place for him is home now and take each day at a time.

It is true about the enzalutamide and we do keep trying to focus on that. He's been on it for about 5 weeks in total now as he had a weeks break from it when he first went in to hospital. So maybe it will soon kick in. Fingers crossed anyway xx

I know I covered some of this in my PM, I will try and find the thread that talked about a sudden and dramatic drop in PSA . It was not that long ago so I should be able to find it.

I will post again when I have had a chance to look for it.

best wsihes as always

xx

Mo

The theory around sudden drop in PSA is about men who are not on treatment so probably irrelevant here. The research suggests that as the cancer cells get more aggressive, they stop producing PSA because they need all their energy to multiply and spread. Let's hope that in Lisa's case, it is simply that the Enzo is doing its job.

Lisa, my reading of your latest information would be that it is getting to the time when you need to start thinking about the end. Say the things that are in your heart, tell him how much you love him, laugh about stories from years ago, don't leave yourself with anything to regret in the years to come. Perhaps your dad is not quite at the final stage of his life, in which case you will be able to tell him these things many times. But sometimes, men slip away a bit quicker than even their medical team expected - perhaps the man just gets tired of fighting and as he sleeps more and more, the opportunities to love him and talk to him disappear and before you know it, it's too late.

He could just seem so ill because of the chemo - it is a pretty aggressive treatment.

That is such good news. As I might be on enzo next I hope it can do the same for me. Long may it last!

Arthur