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Desperately Sad

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User
Posted 07 Nov 2014 at 17:24
Don't know where to turn, feeling very down. My OH has castrate-resistant prostate cancer with spinal cord compression, he has been having palliative chemotherapy since June and has been hospitalised three times since then with neutropenic fever, dehydration and severe pain. He has been out of hospital for a week and is still in pain in his back and has no energy at all (prior to June he was a very active 60 year old). His Consultant says the spinal cord compression is under control he has also had palliative radiotherapy so Why is he still in constant pain?

I am concerned as to what happens next? Will it be Enzalutamide or Abiraterone? And which is best? Will either help with the constant pain?

Is anyone else at this stage of treatment? Has anyone any advice? I would appreciate people's opinions.
User
Posted 09 Nov 2014 at 09:53

I'm with Allison on that point too ! It is unbearably difficult coping with what you are going through, you want to do the best for your loved one but have to keep your own sanity. I have found Macmillan really good to talk to, we are lucky in Bristol to have the first centre in the country on a hospital site. Think I will be banned for eating all their home made cakes. Their phone counselling was really good too. I have just been referred to St Peters Hospice for counselling, as Allison says, take everything you can get, your health and well being are important too. There are lots of us on the forum who absolutely know where you are coming from.


Love, Fiona.

User
Posted 08 Nov 2014 at 19:56
Hello Hedgehog
I'm just popping on to say hello. Watching our loved ones in pain is so awful, my heart goes out to you. Good advice from our lovely band of brothers and sisters here, pain is the most worrying aspect of this whole disease for me, and I''m dreading that day. My husband has been ok most of the time in the last nearly four years of being aware of this disease, I dont know why some suffer and some don't seem to.

No wonder you are down. Have you thought of ringing your hospice and letting them know you feel down? I did this and got some counselling from our local hospice to help me and it worked really well. Talking to people who truly understand illness of this nature is much better than talking to people who really don't.

Take all and any help you are offered.

With love
Allison xx
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User
Posted 07 Nov 2014 at 20:50

Hi, I am not yet at this stage so don't have any easy answers. In fact it is so difficult at this stage and each individual faces different trials. Pain control should be obtainable though and I am going to suggest the obvious of the Macmillan nurses whose attention to this is excellent and also hospice out patient care can include the same help. This is vital for your OH. Has his compression been caught before paralysis. If do this is great news and this will be carefully monitored. Life becomes even more complicated otherwise.

Enzo is getting plenty of good reviews but so has abbytabs. It's a shame it's a lottery. Others will suggest more detail.

Look after yourself too, this is such a difficult time that you will need to maintain your strength and resolve. Good luck in your journey I wish I could help more. Others will come on and contribute.

User
Posted 07 Nov 2014 at 21:31
Hi sorry to read your post it's a hard and emotional time for you both.
You asked about pain with RTh my husband had it for pain but no help also his chemo had no affect with pain relief.
The onco would normaly give you what treatment plan they had in mind when they suggested chemo that's what happened to Eric he would start abby after his chemo.
Make sure you get proper pain management its so important for them to be pain free.
I wish you both well on your journey
Carol
User
Posted 07 Nov 2014 at 22:00
Hi there
the combination of the mets and the SCC can cause some really bad pain which can be hard to get under control. My husband had a similar problem and found the best relief from Gabapentin (Lyrica) in conjunction with transdermal patches of Fentanyl (low dose to start with but this can be increased) when things were really bad he would also take oramorph. It took a lot of trial and error to get to that and the Macmillan pain management nurse started that off.
It is really difficult once the cancer is castrate resistant, chemo may continue to help and possibly adding in enzalutamide and abiraterone but the pain is usually treated as a separate issue,
I do hope you get some help with the pain management.
xx
Mo
User
Posted 07 Nov 2014 at 22:32

Hi Hedgehog,


Seeing our loved ones in pain is the hardest part of this journey, probably contacting Macmillan Nurses and or your local hospice from what I have read this seems to be the best way forward. Some men have been admitted to hospice care just to get the pain relief sorted. I am glad that Mo and Carol have already posted for you.


Trevor is OK pain wise at the moment but when he was first diagnosed around 18mths ago he was in severe pain and like yourself I found this unbearable.


Strange to say but welcome to this site, I hope your hubby can get some relief soon. Paul also commented on taking care of your self and he is right , I know easier said than done.


Take care.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Nov 2014 at 10:30
Hi thank you for your kind replies, to answer Paul yes they did catch the spinal cord compression before paralysis thank goodness although he can't walk very far now and is unsteady on his feet. We are being looked after by a lovely McMillan nurse who is trying to sort out his pain relief but I will mention those drugs Mo to see if they will help.

Thanks again it's kind of comforting communicating with other people in the same situation.

Regards. Hedgehog
User
Posted 08 Nov 2014 at 12:04

Hi Hedgehog, I might sound a little bitter now but the idea of a completely pain-free late stage cancer is for many people an unobtainable myth. In my experience the Macmillan nurses and local hospice teams are much better at pain control than hospital staff because they are dealing with it all the time but don't discount OH's best pain control while looking for something that eradicates it completely. Sometimes it is a fine balance between covering the pain and making the person zonked out.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2014 at 19:56
Hello Hedgehog
I'm just popping on to say hello. Watching our loved ones in pain is so awful, my heart goes out to you. Good advice from our lovely band of brothers and sisters here, pain is the most worrying aspect of this whole disease for me, and I''m dreading that day. My husband has been ok most of the time in the last nearly four years of being aware of this disease, I dont know why some suffer and some don't seem to.

No wonder you are down. Have you thought of ringing your hospice and letting them know you feel down? I did this and got some counselling from our local hospice to help me and it worked really well. Talking to people who truly understand illness of this nature is much better than talking to people who really don't.

Take all and any help you are offered.

With love
Allison xx
User
Posted 09 Nov 2014 at 09:53

I'm with Allison on that point too ! It is unbearably difficult coping with what you are going through, you want to do the best for your loved one but have to keep your own sanity. I have found Macmillan really good to talk to, we are lucky in Bristol to have the first centre in the country on a hospital site. Think I will be banned for eating all their home made cakes. Their phone counselling was really good too. I have just been referred to St Peters Hospice for counselling, as Allison says, take everything you can get, your health and well being are important too. There are lots of us on the forum who absolutely know where you are coming from.


Love, Fiona.

 
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