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User
Posted 23 Jul 2019 at 23:24

Hi,

just looking for some advise. Four and a bit years after dx and after 6 rounds chemo, biculmide, Enzo and 10 rounds chemo, it’s another treatment. Thought last chemo wasn’t working as PSA rose after nr 8 and hair starting growing back. After scans consultant advised as PSA was going up that we should look at cabataxal but needed a three month rest and more tests. Last week found out PSA had gone up to over 700 and met spread to upper spine, ribs and skull (already in pelvis and lower spine) and signs in nodes and lungs.

Happy to try cabataxal 6-10 rounds and she mentioned trying Neptune drug trials. Has another been under Neptune trials. Also what does pain in the bones like? Having difficulty sleeping or getting comfortable as have dull ache in pelvis and legs.Also any other advise on how the hell to keep positive would be good and keep stress levels down!!!

Many Thanks

steven

User
Posted 24 Jul 2019 at 07:48
Very sorry to hear this steve , we were diagnosed much at the same time and although I was T4 I’ve so far been lucky to have no bone involvement. Strange disease !! I’m guessing after all these treatments you should be doing anything and everything that you can on a daily basis to help life be more enjoyable in every way. I suffer severe leg pains with osteoarthritis so know what being kept awake is like. Best wishes to you

If life gives you lemons , then make lemonade

User
Posted 24 Jul 2019 at 09:29

If you haven't already, get yourself referred to the hospice team - not because you need a hospice, but because you need their pain control skills. Now - before it becomes a huge issue.

You'd be amazed how effective paracetamol is taken regularly, not 'when you need it'!

You also need some form of sedative to help you sleep - I agree with Chris; diazepam at the very least. It's easy to dismiss good 'ole Valium, but as well as being a mild, safe, sedative, it's very effective as a 'potentiator' - working with other meds, making them them dose-for-dose more effective. And that works at very low dosages.

But there's a pharmacy full of options ....

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 25 Jul 2019 at 07:48
Thanks Chris and Andrew,

I’ve started on the paracetamol regularly and may look into the hospice for pain control (it’s just the thought of going there) but I know your right.

The hot weather doesn’t help!

Steven

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User
Posted 24 Jul 2019 at 07:48
Very sorry to hear this steve , we were diagnosed much at the same time and although I was T4 I’ve so far been lucky to have no bone involvement. Strange disease !! I’m guessing after all these treatments you should be doing anything and everything that you can on a daily basis to help life be more enjoyable in every way. I suffer severe leg pains with osteoarthritis so know what being kept awake is like. Best wishes to you

If life gives you lemons , then make lemonade

User
Posted 24 Jul 2019 at 07:49
Ask your doc for Diazepam at the very least.

If life gives you lemons , then make lemonade

User
Posted 24 Jul 2019 at 09:29

If you haven't already, get yourself referred to the hospice team - not because you need a hospice, but because you need their pain control skills. Now - before it becomes a huge issue.

You'd be amazed how effective paracetamol is taken regularly, not 'when you need it'!

You also need some form of sedative to help you sleep - I agree with Chris; diazepam at the very least. It's easy to dismiss good 'ole Valium, but as well as being a mild, safe, sedative, it's very effective as a 'potentiator' - working with other meds, making them them dose-for-dose more effective. And that works at very low dosages.

But there's a pharmacy full of options ....

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 25 Jul 2019 at 07:48
Thanks Chris and Andrew,

I’ve started on the paracetamol regularly and may look into the hospice for pain control (it’s just the thought of going there) but I know your right.

The hot weather doesn’t help!

Steven

 
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