Some people have asked me to keep them informed of my progress (or lack of http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif). The original post is in the old forum so this is a new thread which I shall endeavour to maintain http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. In a nutshell, I really want to try Enzalutamide but so far this has been denied me as I was (very briefly) treated with Abiraterone. The annoying bit is that Abby didn't work for me, not even a tiny bit and at that time there was no advice from NICE saying that one excluded the other http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. Basically they moved the goalposts and I am not a happy bunny as it gives my local health trust sufficient grounds to refuse me Enzalutamide. NICE made no distinction between men who benefited from Abiraterone (sometimes years) and those who didn't (i.e. me!). The underlying science is totally different so there is no reason to conclude that Enza will NOT work for me but it will save them money if they don't allow it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif
Let's put this into perspective ....... The Parliamentary Accounts Committee reckons that NI could have saved £73M by using generic drugs instead of branded (we have highest use of branded drugs in the UK)
http://www.bbc.co.uk/news/uk-northern-ireland-31713692
We only need £5M to £7M to cover the cost of a Cancer Drugs Fund for NI and the cost of allowing Enzalutamide to men like me is peanuts
Am I angry - you bet!
Will I take it lying down?
No way !!! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif
Edited by member 06 Mar 2015 at 09:24
| Reason: Not specified
|
User
It is good to see you posting Allister, so yep that is pretty high but as we so often say it is more about how you feel and it is good to hear that you are feeling well. Maybe as you say the 2nd line chemo is now holding it steady.
Of course you still have a way to go to beat Trevor at 13000.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Some people have asked me to keep them informed of my progress (or lack of http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif). The original post is in the old forum so this is a new thread which I shall endeavour to maintain http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. In a nutshell, I really want to try Enzalutamide but so far this has been denied me as I was (very briefly) treated with Abiraterone. The annoying bit is that Abby didn't work for me, not even a tiny bit and at that time there was no advice from NICE saying that one excluded the other http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. Basically they moved the goalposts and I am not a happy bunny as it gives my local health trust sufficient grounds to refuse me Enzalutamide. NICE made no distinction between men who benefited from Abiraterone (sometimes years) and those who didn't (i.e. me!). The underlying science is totally different so there is no reason to conclude that Enza will NOT work for me but it will save them money if they don't allow it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif
Let's put this into perspective ....... The Parliamentary Accounts Committee reckons that NI could have saved £73M by using generic drugs instead of branded (we have highest use of branded drugs in the UK)
http://www.bbc.co.uk/news/uk-northern-ireland-31713692
We only need £5M to £7M to cover the cost of a Cancer Drugs Fund for NI and the cost of allowing Enzalutamide to men like me is peanuts
Am I angry - you bet!
Will I take it lying down?
No way !!! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif
Edited by member 06 Mar 2015 at 09:24
| Reason: Not specified
|
User
NICE are not nice. I know you will fight on Allister, so keep going with your moans / campaigning with our best wishes.
Chris.
User
Good on you Allister, keep posting!
Glen
User
Would a different Consultant help you?
User
Allister I know it would be expensive travelling but have you tried looking into the opportunity of getting on a trial at the Royal Marsden In Sutton London. I believe they are doing trials with Enzalutamide And other drugs (not right sure of the names but something like oproposone is one and also a new one that just has numbers). I know for a fact that enzalutamide is being given to people who have had abiraterone as one of the trials. It is absolutely disgusting what you have to put up with. I know exactly how you feel. Could start a rant again about foreign aid etc. but no one listens. People are dying in THIS country due to lack of funding. Wish you best of luck. If I can help in any way let me know
User
I'll be OK - just like to vent off steam now and then http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif
I have the utmost confidence in my consultant, one of the best in Europe and I shall be applying a virtual boot to a number of political bottoms in the coming months http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif
PS - PSA now @ 1699 (scary but still feel fine)
Edited by member 06 Mar 2015 at 16:47
| Reason: Not specified
|
User
Glad to see you back here Allister and happy to note that despite the PS number, you are still feeling good.
It really makes me sick t the stomach that you cannot be given enzalutimide when it's available here. Keep kicking those backsides Allister.
Love
Allison and John
User
PSA holding steady at 1717. Good news in a strange way as the exponential rise has stopped without any new treatments. I see my Oncol on April 9th and I assume he'll put it down to the after effects of the 2nd line Chemo. Either way I feel fine and am starting to get my head around living with a PSA in the thousands http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif
|
User
Amazing,you give everyone a boost. Glad to know you are coping. El
User
Whoever thought I'd be saying brilliant to a PSA like that, but in this case, yes it's brilliant news Allister.
Love Allison xx
User
Keep fighting, Allister
Steve
User
Keep up fighting Allister, we are all routing for you to kick its a..!
Chris.
User
Damn, not the best of news :(
George, thanks for updating.
Kevin
User
Thanks for letting us know George and fingers crossed he gets through this latest set back
Bri
User
Yes, thanks George ! Thinking of you Allister as no doubt many here will also be doing. Hope this can be sorted asap !
Regards, Fiona.
User
This is worrying news but when Alathays says he will be better in a couple of days, it is wise to believe him. I sort of doubted he would recover properly from falling out the loft that time but he literally bounced back!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thank you for letting us know George, and thinking of you Allister, love Janet
User
Thanks for passing on this latest information about Allister's latest set back. Allister, we are thinking of you and Laura at this time.
Alan
User
Hope you're better soon Allister. We're all behind you.
Paul
Stay Calm And Carry On. |
User
These are tough times for our friend, knowing Allister he will overcome this latest Pca nasty.
muxh love to Allister xxx
User
Some times you check in on the forum and then have to take a deep breath , Allister is a fighter and I am sure he will come through this. Much love and thinking of you Allister.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Like others hope Allister will soon overcome this hurdle. Best wishes.
Barry |
User
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Sorry to read this, hope you get through it.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Lyn wasn't kidding in her post (above).
Latest from the irrepressible Allister:
"Feeling much better this morning, Haemoglobin normal, Platelets up to 68, home tomorrow I hope"
He's made of steel, I'm sure.
|
User
Thanks George, apologies as only just picked this thread up.
I give up on trying to type All etc name from my mobile to quick reply. You (All ) don't give up - which you want of course
Good Luck.
Ray
User
Good news to start the weekend. X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
All the best Alathays.
Hope you feel better soon.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
It's the first time in many months I have been on here.
Allister good luck and glad to read you are pulling through.
You'll soon be fit to take the fight to the politicians regarding NICE. Its tough enough fighting PCa without having to fight NICE as well. You'll do it Allister.
I will approach my MP about this matter.
...and thanks George for the updates. See you in 3 weeks.
Gary.
Edited by member 30 May 2015 at 14:16
| Reason: Not specified
User
Thanks for the update, George.
Good news he's home.
Please send him my best wishes.
Steve
Show Most Thanked Posts
User
NICE are not nice. I know you will fight on Allister, so keep going with your moans / campaigning with our best wishes.
Chris.
User
Good on you Allister, keep posting!
Glen
User
Would a different Consultant help you?
User
Allister I know it would be expensive travelling but have you tried looking into the opportunity of getting on a trial at the Royal Marsden In Sutton London. I believe they are doing trials with Enzalutamide And other drugs (not right sure of the names but something like oproposone is one and also a new one that just has numbers). I know for a fact that enzalutamide is being given to people who have had abiraterone as one of the trials. It is absolutely disgusting what you have to put up with. I know exactly how you feel. Could start a rant again about foreign aid etc. but no one listens. People are dying in THIS country due to lack of funding. Wish you best of luck. If I can help in any way let me know
User
I'll be OK - just like to vent off steam now and then http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif
I have the utmost confidence in my consultant, one of the best in Europe and I shall be applying a virtual boot to a number of political bottoms in the coming months http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif
PS - PSA now @ 1699 (scary but still feel fine)
Edited by member 06 Mar 2015 at 16:47
| Reason: Not specified
|
User
Glad to see you back here Allister and happy to note that despite the PS number, you are still feeling good.
It really makes me sick t the stomach that you cannot be given enzalutimide when it's available here. Keep kicking those backsides Allister.
Love
Allison and John
User
PSA holding steady at 1717. Good news in a strange way as the exponential rise has stopped without any new treatments. I see my Oncol on April 9th and I assume he'll put it down to the after effects of the 2nd line Chemo. Either way I feel fine and am starting to get my head around living with a PSA in the thousands http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif
|
User
Amazing,you give everyone a boost. Glad to know you are coping. El
User
Whoever thought I'd be saying brilliant to a PSA like that, but in this case, yes it's brilliant news Allister.
Love Allison xx
User
Keep fighting, Allister
Steve
User
It is good to see you posting Allister, so yep that is pretty high but as we so often say it is more about how you feel and it is good to hear that you are feeling well. Maybe as you say the 2nd line chemo is now holding it steady.
Of course you still have a way to go to beat Trevor at 13000.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Keep up fighting Allister, we are all routing for you to kick its a..!
Chris.
User
Dear Friends,
Allister has just texted to let me know he's been admitted to hospital with a blood clot on his brain.
Now wonder he had that severe headache he mentioned a few days ago
He says he'll be in for one or two days.
And this just four days after a two night hospital stay to boost his Haemoglobln and Platelet levels.
On behalf of us all here on PCUK, on Allister's own 'Dark Side' forums and on B2PCa, STAY STRONG ALLISTER, we're willing you to overcome yet another cruel blow.
You're in our thoughts, hearts and prayers.
All the very best to our 'National Elf',
George
PS: I've noticed Allister has kept his profile bang up to date, last entry being just two days ago.
Here's the link:ALLISTER PROFILE
|
User
Damn, not the best of news :(
George, thanks for updating.
Kevin
User
Thanks for letting us know George and fingers crossed he gets through this latest set back
Bri
User
Yes, thanks George ! Thinking of you Allister as no doubt many here will also be doing. Hope this can be sorted asap !
Regards, Fiona.
User
This is worrying news but when Alathays says he will be better in a couple of days, it is wise to believe him. I sort of doubted he would recover properly from falling out the loft that time but he literally bounced back!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thank you for letting us know George, and thinking of you Allister, love Janet
User
Thanks for passing on this latest information about Allister's latest set back. Allister, we are thinking of you and Laura at this time.
Alan
User
Hope you're better soon Allister. We're all behind you.
Paul
Stay Calm And Carry On. |
User
These are tough times for our friend, knowing Allister he will overcome this latest Pca nasty.
muxh love to Allister xxx
User
Some times you check in on the forum and then have to take a deep breath , Allister is a fighter and I am sure he will come through this. Much love and thinking of you Allister.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Like others hope Allister will soon overcome this hurdle. Best wishes.
Barry |
User
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Sorry to read this, hope you get through it.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Lyn wasn't kidding in her post (above).
Latest from the irrepressible Allister:
"Feeling much better this morning, Haemoglobin normal, Platelets up to 68, home tomorrow I hope"
He's made of steel, I'm sure.
|
User
Thanks George, apologies as only just picked this thread up.
I give up on trying to type All etc name from my mobile to quick reply. You (All ) don't give up - which you want of course
Good Luck.
Ray
User
Good news to start the weekend. X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
All the best Alathays.
Hope you feel better soon.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
It's the first time in many months I have been on here.
Allister good luck and glad to read you are pulling through.
You'll soon be fit to take the fight to the politicians regarding NICE. Its tough enough fighting PCa without having to fight NICE as well. You'll do it Allister.
I will approach my MP about this matter.
...and thanks George for the updates. See you in 3 weeks.
Gary.
Edited by member 30 May 2015 at 14:16
| Reason: Not specified
User
Latest from Allister (I hope he'll be able to update this further later on)
Back home Friday night http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Platelets down @ 53 but back Saturday at 12:00 for more tests.
Possible low dose Chemo next week but everything up in the air ???
PSA is down to 1500 but ALP up to 257 and blood clots on the brain.
Awful time yesterday - couldn't even remember where I lived! Back to (almost normal) but haemoglobin falling as are platelets.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Need to talk to my oncologist on Tuesday when he gets back from Chicago.
|
User
Thanks for the update, George.
Good news he's home.
Please send him my best wishes.
Steve
User
I sure everybody here sends Allister best wishes as I do.
Barry |
User
Rooting for you Allister
Trev
User
Keep fighting brother.
Bazza