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Seven years and still alive

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User
Posted 18 Feb 2015 at 07:40
Hi folks

Today I have survived 7 years since that awful diagnosis in 2008. The "two to three years" standard prognosis for a man with advanced metastatic PCa spread to bone has long since been beaten but the journey has not always been easy, as my profile will testify!

OK, my PSA is on the high side @ 1410 but I feel no different to when it was less than 1. I have just had a CT, MRI and Bone scan, all of which show NO disease progression. The bone scan is actually better than last year and my oncologist puts this down to the Chemo. Best of all is that the CT scan still shows NO soft tissue involvement i.e. My disease is 100% confined to bone, where hopefully we can control it.

I really need Enzalutamide now but have been denied access by the local health trust on the grounds that I have had Abiraterone (a few months, didn't work for me). Hopefully this situation will change. I have been involved in a long campaign to create a Cancer Drugs Fund for N. Ireland and ease the restrictions on individual funding requests. I have had private meetings with the health minister and the chief medical officer and am pleased to say that yesterday they announced a 12 week consultation into the creation of such a system, funded by the re-introduction of subscription charges.

Watch this space ......

Nil desperandum

Allister

User
Posted 18 Feb 2015 at 07:40
Hi folks

Today I have survived 7 years since that awful diagnosis in 2008. The "two to three years" standard prognosis for a man with advanced metastatic PCa spread to bone has long since been beaten but the journey has not always been easy, as my profile will testify!

OK, my PSA is on the high side @ 1410 but I feel no different to when it was less than 1. I have just had a CT, MRI and Bone scan, all of which show NO disease progression. The bone scan is actually better than last year and my oncologist puts this down to the Chemo. Best of all is that the CT scan still shows NO soft tissue involvement i.e. My disease is 100% confined to bone, where hopefully we can control it.

I really need Enzalutamide now but have been denied access by the local health trust on the grounds that I have had Abiraterone (a few months, didn't work for me). Hopefully this situation will change. I have been involved in a long campaign to create a Cancer Drugs Fund for N. Ireland and ease the restrictions on individual funding requests. I have had private meetings with the health minister and the chief medical officer and am pleased to say that yesterday they announced a 12 week consultation into the creation of such a system, funded by the re-introduction of subscription charges.

Watch this space ......

Nil desperandum

Allister

User
Posted 19 Feb 2015 at 17:39

Alister,

A massive 'CONGRATULATIONS MATE!!' is in order.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Little did you think you'd be as active as ever in 2015 when we first met in 2008, and boy are we glad you are!

Your campaigning efforts alone are worth a knighthood, but the main reward you should receive now is to get whatever treatment you need WHENEVER you need it.

'Bollocks' to all these petty, nasty, mean minded restrictions imposed on qualification for certain drugs.

Carry on fighting. You're an amazing bloke. Definitely 'Our National Elf'.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif


All the very best,


George and Lynn

Edited by member 19 Feb 2015 at 17:41  | Reason: Not specified

B2PCa
User
Posted 19 Feb 2015 at 17:27
Well done you so pleased to read your news fingers and everything else crossed.

Makes you think how diffrent every man is with mets.Erics psa taken before he passed away on July best result for a while just 6.on dx he was 47.

If I rember T.G.. also he was havimg low psa results before he passed away not long after Eric.

Keep up your fight and keep doing what your doing made me smile when I read this.

Carol

Edited by member 19 Feb 2015 at 17:32  | Reason: Not specified

User
Posted 19 Feb 2015 at 18:18
What a wonderful post Allister.

I'm with George, you should be rewarded width a gong, though we'd all prefer you got Enzalutimide.

Well done for getting this far with the politicians, I think you may have missed your calling in life!

Lots of love to you and Laura xxxx

User
Posted 22 Feb 2015 at 11:26

Paul

I am pleased that you can see some light at the end of the tunnel and are hopeful for the future. I have had my dark times too but I have also had my life enhanced by this illness, strange at that may seem http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif. I have met the most wonderful human beings and made many friendships. We are all different but I truly believe this awful disease will be defeated or at least made controllable. I am in uncertain territory now but I trust in my oncologist and the technology to see me through a few more years http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif. You have made a great start with the STAMPEDE trial and I wish you well http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif.

 

To all the others who have replied with such kind remarks, I hope to update you on my 8th anniversary http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif

Nil desperandum

Allister

User
Posted 23 Feb 2015 at 19:01

Congratulations on your anniversary and long may you continue! Hope you get your well deserved Enzalutamide - you are an inspiration.

 

Glen

Show Most Thanked Posts
User
Posted 19 Feb 2015 at 14:53

Well done Allister. Good to hear you are still doing so well. My spouse is in same camp as you and is 2.5 yrs since diagnosis.

Max

"You can only play the hand you're dealt"

User
Posted 19 Feb 2015 at 15:34
Alliaster, your message gives newbies like me great hope, thank you for sharing your survival with us. I hope you also get the drugs that you need very soon. Kevin

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 19 Feb 2015 at 17:27
Well done you so pleased to read your news fingers and everything else crossed.

Makes you think how diffrent every man is with mets.Erics psa taken before he passed away on July best result for a while just 6.on dx he was 47.

If I rember T.G.. also he was havimg low psa results before he passed away not long after Eric.

Keep up your fight and keep doing what your doing made me smile when I read this.

Carol

Edited by member 19 Feb 2015 at 17:32  | Reason: Not specified

User
Posted 19 Feb 2015 at 17:39

Alister,

A massive 'CONGRATULATIONS MATE!!' is in order.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Little did you think you'd be as active as ever in 2015 when we first met in 2008, and boy are we glad you are!

Your campaigning efforts alone are worth a knighthood, but the main reward you should receive now is to get whatever treatment you need WHENEVER you need it.

'Bollocks' to all these petty, nasty, mean minded restrictions imposed on qualification for certain drugs.

Carry on fighting. You're an amazing bloke. Definitely 'Our National Elf'.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif


All the very best,


George and Lynn

Edited by member 19 Feb 2015 at 17:41  | Reason: Not specified

B2PCa
User
Posted 19 Feb 2015 at 17:51

Alister,

Really good to hear the news. And great to see such strength of mind and character!  I hope you get what you want.

Keep on trucking!

flexi

 

User
Posted 19 Feb 2015 at 18:18
What a wonderful post Allister.

I'm with George, you should be rewarded width a gong, though we'd all prefer you got Enzalutimide.

Well done for getting this far with the politicians, I think you may have missed your calling in life!

Lots of love to you and Laura xxxx

User
Posted 19 Feb 2015 at 19:42
Allister, you have been a constant source of advice, inspiration and help to hundreds of people on this forum including myself. I find myself approaching my fifth year since diagnosis and have been through the mill though not the same mill as yourself. You continue to be an inspiration to others and I wish you God Speed and another seven years and more. Let's defy the the textbooks, the doom-mongers, the pessimists and the negative GPs and Docs who, however well intentioned, do not have a direct line to the Almighty. Congratulations friend.

Bazza (Barry)

Edited by member 20 Feb 2015 at 14:00  | Reason: Not specified

User
Posted 19 Feb 2015 at 19:51

Congratulations. Good news. Hope you get the Enzalutimide at some point.

dave

User
Posted 20 Feb 2015 at 01:55

Good that you are feeling well despite your high PSA and hope this continues to be the case. I hope effective drugs will be made available to men with PCa and others with medical need. However, from what I saw on TV today, it seems tightening up on qualification for drugs will be expected of NICE under revised quality of life,year cost formula if recommendations are accepted. It was argued that the very high cost of some drugs used to extend the lives of some patients by a few months could be better used for people with other problems that would have better results over a longer term.

Barry
User
Posted 20 Feb 2015 at 02:28

Well Done, Allister, Congratulations on your 7th Anniversary.

Thanks for everything you do to help the cause.

Steve

 

User
Posted 20 Feb 2015 at 09:56

Allister,

From your starting point 7 years is certainly some achievement not only by you but the knowledgeable team of medics you have around you as well. Good luck with getting the treatment you want, although I’m sure you want just let luck depend on it :)

Ray

User
Posted 20 Feb 2015 at 13:06

Well done Allister, this is great news. Good to have such an inspiring story, long may it continue !

 

Fiona.

User
Posted 20 Feb 2015 at 13:30

Well done, Allister. Positive news not just for yourself, but your experiences bring hope to those newly diagnosed.

Paul

Stay Calm And Carry On.
User
Posted 20 Feb 2015 at 23:08

Heartening news indeed! It has instilled hope and optimism for me and probably others who may, one day, find ourselves in similar circumstances.

Thank you and best wishes.

Jacey

User
Posted 21 Feb 2015 at 09:21

Well done Allister on passing the 7 year milestone, hope you can persuade your local CGC to give you Enzalutamide soon, your courage and perseverance really shines through. [Shirley says, "thanks for all the campaigning you do too"]

Chris.

User
Posted 21 Feb 2015 at 13:40

Your reward is now you have eight to aim for http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User
Posted 21 Feb 2015 at 17:12

Hi Allister

Your posting is one of good news which we like to see. It is great that you are feeling well despite your high PSA level. Just goes to show that the numbers cannot be predicted.

All the Best

Alan

User
Posted 21 Feb 2015 at 18:15

Hello Allister
I was having problems sleeping due to nightmares where I was just cheating death until I read you post and history yesterday.
Last night I had my best nights sleep for ages and today has has been such a good day (apart from Town drawing to Cardiff at home).

I'm fairly newly diagnosed and have just started on a Stampede Trial but was still thinking in unknown timescales of life expectancy.

You have just given me so much more hope. Rightly or wrongly I've related my diagnosis to yours at the start and whilst I can try to understand the challenges you met during treatment I can see your successes and hope for the same.
Maybe I'm lucky in that I am on the Stamped Gp J which consists of Arbiraterone plus Enzalutamide as well as the usual Prostap injections.

I can't understand why they won't give you Enzalutamide , just keep pushing and if you haven't already write to your MP and ask his support for the "Medical Innovation Bill" trying to get through parliament before the recess.

All the best
Paul

User
Posted 22 Feb 2015 at 11:26

Paul

I am pleased that you can see some light at the end of the tunnel and are hopeful for the future. I have had my dark times too but I have also had my life enhanced by this illness, strange at that may seem http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif. I have met the most wonderful human beings and made many friendships. We are all different but I truly believe this awful disease will be defeated or at least made controllable. I am in uncertain territory now but I trust in my oncologist and the technology to see me through a few more years http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif. You have made a great start with the STAMPEDE trial and I wish you well http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif.

 

To all the others who have replied with such kind remarks, I hope to update you on my 8th anniversary http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif

Nil desperandum

Allister

User
Posted 23 Feb 2015 at 19:01

Congratulations on your anniversary and long may you continue! Hope you get your well deserved Enzalutamide - you are an inspiration.

 

Glen

User
Posted 23 Feb 2015 at 22:15

Please allow me to add my congratulations too Allister. Although we haven't yet met I have read your posts both in this forum and on the Dark Side and I must say you have been an inspiration for many. There are those who post here, some of whom, feeling in the darkest and worst places in their lives, will have have read of your journey and possibly for the first time feel encouragement and the possibility of a future. That's a wonderful gift for anyone. Long may it continue and I will hopefully make your acquaintance this year in Leicester.

 

Steve  

Edited by member 23 Feb 2015 at 22:17  | Reason: Not specified

User
Posted 24 Feb 2015 at 08:17

Well done Allister.

We all know that you are a tenacious terrier nipping at the tender parts of the establishment, may it be fruitful for many years yet!

All the best

 

Kevin

User
Posted 25 Feb 2015 at 16:13
Congratulations to you allister on your 7 year achievement, you are an inspiration to many of us. lesley x
User
Posted 26 Feb 2015 at 17:12

Congrats to you for showing that gloomy prognosis the door !


Ross

User
Posted 26 Feb 2015 at 22:43

Hi Allister,

Long time no speakhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif as usual you are such an inspiration and such an ambassador all I can say is keep going , keep fighting and will I see you at Crufts.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 27 Feb 2015 at 13:46

Your story is an inspiration for those who come on here worrying about the prospects for themselves or a family member. Long may it continue!

Paul

Stay Calm And Carry On.
 
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