It's been a while since I posted on PCUK but I know that some follow my story and may be interested in recent developments (none of which are good http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif). I have always considered myself lucky to have survived this long despite being diagnosed with a high PSA and extensive bone mets back in Feb 2008. Every time things got out of hand my brilliant oncologist would work to find Plan B, C etc. Well now we have run out of plans, partly due to the postcode lottery that is the NHS which has denied me access to certain drugs http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif
Check out my updated profile but basically my PSA is rocketing (2020) with ALP following (328) due to serious bone met activity. This has resulted in extremely low haemoglobin and platelet counts as the cancer takes over my bone marrow, leaving me very weak and tired. I had to be admitted to hospital several times for blood transfusions and developed a "Sub Dural Haematoma" or brain haemorrhage to you and me http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif
It was scary and has lefty me partially deaf on the left hand side as well as a bit confused at times (nothing new there says Laura http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif). The oncologist was straight and to the point. Without intervention I will not see Christmas and there is no recognised standard treatment. The plan (i.e. Plan A, the only plan) is to drip feed me low dose Chemo (25 mg Docetaxel) each week over a short period (4 on and 2 off). The "theory" is that the Chemo will zap the the PCa in the spine and allow more production space for the bone marrow cells to produce platelets. It's this lack of platelets that caused my brain haemorrhage and by far the most serious aspect of developments. The Chemo WILL of course also destroy healthy cells as well but the theory is that the PCa gets hit harder and I have a track record in responding well to Docetaxel http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif. If we can get the platelet situation stabilised then I could soldier on a while on regular blood transfusions, otherwise it's curtains http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif
Been NICE (pun intended) knowing ya all http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif
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Allister
It's so difficult to read this, even though you have set things out clearly and have added your usual humour. I knew things were tough for you and that the cancer had taken hold. I wish we could get you enzalutimide, but in the absence of that your oncologist is doing everything possible to see that you and Laura get the maximum time together.
If prayer works , I am praying for you my friend. You have been a friend to many on this site and deserve every chance to live.
Thinking of you Allister
With love
Allison and John xxxx
User
Dear Allister,
You know how I feel about your situation at the moment. I'll never lose faith in your ability to defy the odds.
I've never known anyone as strong as you.
Just keep the 'Fat Lady' chained up in a locked cellar. It will be a heck of a long time till she sings.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
Keep on Kipling!
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Keep the fight going my cyber football buddy ... hope to see you next season for some more footy banter http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
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I fully agree, Dave.
How about we join Allister at White Hart Lane next time he comes over for the top games, such as Spurs v Liverpool and Spurs v Sunderland!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
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Be careful what you ask for - Spurs have never lost or even drawn a game I've attended http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
PS - they should PAY me to attend http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
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Allister,
Last chance saloon? I really hope not, you're our vanguard!
I really do marvel at your sheer determination, your True Grit. Our own Rooster Cogburn.
And likewise I can hear you saying, as you load up that PCa repeating rifle... "Baby sister, I was born game, and I mean to go out that way!"
Keep on in there!
flexi
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Allister
I've recently been in the other place to check how you go - it reads you had an enjoyable time.
I sincerely hope you respond well to Docetaxel
Ray
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Allister
It's so difficult to read this, even though you have set things out clearly and have added your usual humour. I knew things were tough for you and that the cancer had taken hold. I wish we could get you enzalutimide, but in the absence of that your oncologist is doing everything possible to see that you and Laura get the maximum time together.
If prayer works , I am praying for you my friend. You have been a friend to many on this site and deserve every chance to live.
Thinking of you Allister
With love
Allison and John xxxx
User
hi allister
really dont know how to repond, but am willing you the best
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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Dear Allister,
You know how I feel about your situation at the moment. I'll never lose faith in your ability to defy the odds.
I've never known anyone as strong as you.
Just keep the 'Fat Lady' chained up in a locked cellar. It will be a heck of a long time till she sings.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
Keep on Kipling!
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Hello Alathays,
I'm sorry, I'm lost for words, unusual for me, I can usually find something to say.
I hope that something good comes out of your chemo. I pray that you will gain some benefit from it.
I wish you all the best with all my heart
Sandra
We can't control the winds - but we can adjust our sails |
User
Sorry to read this news, hope that you can get some respite at least.
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. |
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Allister
I was asking George about you at the weekend. I was never comfortable about the bad stuff that went on between you and a friend of mine here but life is too short as we all know to bear grudges.
I am really sorry that things are moving the way they are but you do so often astound the medics so maybe there is life in the last chance saloon. I hope so.
Best wishes
Xx
Mo
Edited by member 23 Jun 2015 at 21:50
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User
Allister,
So sorry your news is bad but you are a fighter and we hope you will confound predictions. We missed you at Leicester but know you had other plans.
Best wishes,
Barry |
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Hi Allister,
I was only thinking of you yesterday and wondering how you are and there you go and pop up. It is very difficult to reply without anger at the drug situation . When my children moan at me saying but that's not fair my reply is always Life isn't Fair and in your situation LIFE CERTAINLY ISN'T FAIR, I would have liked to add a few more F words but I will refrain.
Thinking of you.
Love Julie and Trevor. X
BFNhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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I was surprised to hear J commenting on Saturday that Enzo doesn't tend to work after abby-tabby but I guess you would have liked the opportunity of trying it anyway. Hoping that this next round of chemo knocks it back enough for you to have a decent summer and yet another cruise!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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First round of low dose Chemo today and feeling OK. Apparently I can get a blood & platelet transfusion (if necessary) on the SAME day as the Chemo (now every Tuesday on a 4 on 2 off basis). Regular blood transfusions will almost certainly be the order of the day until the final clogs are popped http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif.
What I objected to most about the Enzalutamide saga is that it wasn't licenced when I was put on Abby and there was no choice. True, Enza doesn't tend to work for men who have been on Abby but the ruling made no distinction between men like me who were only on Abby for a short time (less than 12 weeks) and for whom it had no effect at all and those who extracted a decent period of remission (typically 12 to 18 months). In other words they moved the goalposts during the game! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif
My Oncol reckons I had about a 30% chance of success with Enza but now I can't have it even if they changed their minds today due to my current bone marrow situation. The same situation rules out the TOPARP trial and further access to Radium 223.
Gotta stop getting angry and get even (with the PCa) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif
Edited by member 24 Jun 2015 at 15:30
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Keep the fight going my cyber football buddy ... hope to see you next season for some more footy banter http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
User
I fully agree, Dave.
How about we join Allister at White Hart Lane next time he comes over for the top games, such as Spurs v Liverpool and Spurs v Sunderland!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
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Be careful what you ask for - Spurs have never lost or even drawn a game I've attended http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
PS - they should PAY me to attend http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
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Hi Allister,
Sorry to hear this news, been waiting on a post as I have lost my access to the dark side,
All I can say keep fighting
User
Any problem with Dark Side access then just email or message me Barry :-)
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Hi Allister,
Really sorry to hear your struggle is becoming harder. I really hope things can be made easier for you in the coming months.
Thinking of you.
Best Wishes,
Steve
User
Keep fighting pal. You have been an inspiration to many, many others, myself included. We all know the inevitability of this journey but you've been belligerent if nothing else. Don't change fella. God speed.
Bazza (Barry)
User
Allister,
Last chance saloon? I really hope not, you're our vanguard!
I really do marvel at your sheer determination, your True Grit. Our own Rooster Cogburn.
And likewise I can hear you saying, as you load up that PCa repeating rifle... "Baby sister, I was born game, and I mean to go out that way!"
Keep on in there!
flexi