Enzalutamide causing pain??

User

Posted 06 Aug 2015 at 13:14

Hi 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

User

Posted 25 Aug 2015 at 22:49

hi,
The latest on my dad is that he has been home from hospital for a week and a half now but really looks ill. He was rushed in to hospital on Friday as the Dr at home wasn't happy with him and he needed a blood transfusion, he had 3 bags. Today he has seen his consultant who said he is very happy that his psa level has dropped right down to 60 which his consultant said shows the enzulatamide is working. so my mum and dad are over the moon. But he needs to go back to hospital on Thursday for another blood transfusion. His consultant doesn't know what is causing that to happen. I look at my dad and he looks so very poorly, sleeps the majority of the day and is needing blood transfusions but his consultant is happy with the chemo drug.
What does this mean?? Is he very ill but the chemo drug is slowing things down or do you think he is still very ill?? I am so very confused.
Thank you
Lisa

User

Posted 26 Aug 2015 at 08:15

Indigo
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

User

Posted 26 Aug 2015 at 14:03

L

I just cannot find that post, the search facility on here is quite hit and miss, It was not an entire conversation but a post within a conversation. I am fairly sure it was written by Lyn. It was explaining in a very easy to understand way a theory on why some men in end of life care suddenly get a radical drop in PSA down to almost undetectable levels.
To be honest and in hindsight there are 2 things you have mentioned that would make me think it is not the likely occurrence in your Dads case. First he is still being treated palliatively by his Oncologist so is not in what is commonly called end of life care. Secondly the drop down to 60 is a massive drop from the pre Enzalutamide figures but it is still very much present so the cancer is active but not as active possibly as before. I would say this is why the consultant wants to persevere. If your Dad is happy to as well then that is really his decision and choice.

The tiredness, looking ill and lack of iterest in general from your Dad probably are all down to SEs and really low blood counts. The transfusions should make him feel and appear a little better for a while but may need to be repeated quite regularly.

I know this is all upsetting and confusing for you but try and have faith in the medical team, I am sure that they would not carry on if they thought it really was to no avail.

Best wishes
xx
Mo

User

Posted 26 Aug 2015 at 18:16

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.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Sep 2015 at 22:29

Hi All,
I realised I hadn't updated on my dad for a while. All I can say is I now believe in miracles. And that miracle is probably in the name of enzalutamide. My dad is doing absolutely fantastic, he looks the best he has probably looked for the whole of this year. He's eating really well so had put weight on, he is pain free and getting a full nights sleep. His psa has dropped and his bone mets have dropped. He still struggles with walking and I think he will now always need a wheelchair but that is just fine. Two months ago I was desperate as I thought we were losing him, now a miracle has definitely happened.
So anybody out there who are having second thoughts on wether to try the enzalutamide, just try it as it has given my dad a new lease of life xx

User

Posted 30 Sep 2015 at 22:59

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!

User

Posted 01 Oct 2015 at 07:32

Wow Indigo that is an amazing turnaround . I expected the worse its been so long we heard from you . All our very best wishes
Chris and Elaine

User

Posted 01 Oct 2015 at 08:08

What a wonderful and encouraging update!

Arthur

User

Posted 01 Oct 2015 at 11:27

Great news

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 05 Jan 2016 at 23:20

Hi All,
I haven't been on here for such a long time.
Unfortunately things have got really bad for my dad.
After spending the summer in hospital, he had a really good few months on enzalutamide. He has detoriated quite badly over the last couple of months. At his last review his ids level had gone from 85 to 135 in 4 weeks. He had a couple of falls the week before Christmas and then was admitted in to hospital last week. He had a scan last week which showed the cancer had spread all the way up his spine. Yesterday we were called to the hospital and was told to get there as soon as we could. I was not prepared for how my dad was. He had had two brain seizures and was in a coma. His consultant came to see us. He told us he had seen the scan he had last week and his words were my dad was riddled with cancer and a very aggressive one at that. It had also spread in to his liver. He also told us my dad would not wake up from the coma and wouldn't make the end of the week. To our very surprise my dad came out of the coma wondering what all the fuss was about and why everybody was with him. He is going for a brain scan tomorrow to see what caused the seizures. Our guesses are one of two things, it is either compression on the brain as the cancer is in his skull and all the way down his spine or the cancer has spread to his brain. I have read that it is very rare for prostrate cancer to spread to the brain.
I wondered if anybody on here has come across this before?? this is completely heartbreaking and such a roller coaster of a ride xx

User

Posted 06 Jan 2016 at 16:02

L
I have just posted for you on your other conversation. You can PM me anytime
xx
Mo

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