Simon story chapter 1
Edited by member 20 Jun 2014 at 16:47
| Reason: Not specified
Don't deny the diagnosis; try to defy the verdict |
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Shocking that someone who has had the benefit of support from others and then been able to repay that ten-fold by giving hope to others who join us with dire diagnoses feels forced to remove their profile and recent posts.
PCUK, do something please to resolve people's concerns about this new forum before it is too late!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Time for an update
So I made it to one day short of a year off of HT my PSA in the last four weeks tripled so all support and understanding I had from friends and family for staying off treatment went and to tell the truth I felt totally ambushed and pressurised to go back on treatment
Still pretty angry with myself but four weeks ago restarted zolodex didn't bother with the casadex much to Jamie's annoyance but he was expecting a spike in PSA by just having zolodex on its own but after 4 weeks PSA went from 1.28 too 0.4 😀 So with a bit of luck I will be undetectable before my next zolodex and if that is the case I am stopping again
Hope to see a few of you at the flyer in December
Si xx
Don't deny the diagnosis; try to defy the verdict |
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A Serialisation! Looking forward to a long book with loads of chapters, maybe even a trilogy.
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So met with Jamie tonight to discuss what we do going forward, PSA is now 5, CT scan was clear of soft tissue but bone scan showed two new sites on the ribs and another one on the spine i am buggered how he found room on the spine but fair play to him.
So my thought was after Jamie investigated the Testosterone flood and drought i thought he might decline to do it as all trials done so far excluded patients that had had chemo and i had had two sorts and also my tumor mass is far more than anyone on the trials but fair play he came up trumps.
So tonight i had Zoladex and 400mg of testosterone, my current testosterone level is at castrate and it is expected over the next 24-48 hours to reach between 1000-1200 then drop back to castrate by day 7, this will then be repeated every 28 days.
The PSA is expected to rise but get a good drop by cycle 2 if not we stop, my testosterone levels will be checked on Monday to see what level i am at.
So pretty exciting, Jamie said this is probably my reputation walking out the door.
Will keep you updated
Si xx
Don't deny the diagnosis; try to defy the verdict |
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Si and Ness
I suppose if you are not here you will not see what I post .... You are both fighters, fellow battle comrades and the best support anyone could ever hope to find. You give Cancer the biggest kick up the backside but you feel challenged by a computer forum ...come on get with the program help all of us to keep pressing the forum designers to make things more 'Giffer' friendly and to link our old threads to the new forum.
As you know I am a lady who is not for turning (forgive the use of the Late Maggie's phrase)
Sadie et al at PCUK ...please listen to us all and work with us to make things better it would be tragic if the long term contributors who have a wealth of support and knowledge to give others abandon ship
Mo
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Bri, you said something very similar to me when I had a chat with Si about this on the day.
Si The blood results are brilliant and small progression in one area is better than can normally be expected for a Man with the number and extent of mets you had at diagnosis almost 2 years ago ....I just realised it really is almost 2 years, that does it when we meet at the flyer it must be cancerversary drinks!!
As for the unidentified thing well we could start a whole new conversation on what it might be I think
they have discovered the implant the aliens put in to turn you into Si Superman when they briefly abducted you in January 2013.
see you all soon
xxx
Mandy Mo
Edited by member 02 Nov 2014 at 09:07
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Thank you for all your comments, we really appreciate them.
So things where never going to be as easy as holiday then see Jamie in September. Hospital rang yesterday they want to do bloods again and see Jamie on the 14th July, they are not happy with the level of increase of my PSA.
Now correct me if i am wrong but i still have a prostate, have never had RT to it so why would my PSA not rise especially as i am not having any treatment. And if they was not using a super sensitive test then my PSA would be <0.1.
I love my medical team to bits but sometimes they need to understand were my priorities lay, in August me and my girls will be Jet skiing, parascending horse riding on the beach and having fun so cancer can do one, and in September the gloves are off.
hope everyone has a good a weekend as they possibly can.
Si xx
Don't deny the diagnosis; try to defy the verdict |
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Si
that's brilliant news that your PSA is halving quicker than it was doubling and with only Zoladex too. I bet Jamie is worried what he will say at your next get together. He might open with "OK looks like Kryptonite really does work?"
In all seriousness friends and family were obviously all just worried and wanted you to do what the medical experts advised. Those that know you best will have been quietly relieved that you did. Now that this has been such a great turn around they will be even more acutely aware that you will do what is best for you in your own minds eye.
I am just really happy that you are looking and sounding so very well despite everything.
all my very best wishes and a big hug to you and all yours
xxx
Mo
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Si Superman ,
Our journey has ended and we started at pretty much the same starting block as you with just a few months in it . You my friend have loads of mileage in you and trust me you are going to make the 10 mile point .
You are going to continue on this rocky road and I have I got a super Si Roket straight up your back side to make sure you do.
Xx
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hi Si,
I just wanted to wish you good luck with your treatment. It looks as if I will be starting treatment again very soon as my PSA is on the rise. It looks as if I'm about to join the incurable club!
Take care.
Steve
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Just thought i would post my bone scan from when i was diagnosed January 2013 for anyone newly diagnosed with mets. The black bits are the cancers but 18 months on i am good, six months of chemo and currently 11 months on abiraterone, PSA and testosterone still undetectable and ALP at 40.
So even when you get a crap diagnosis don't give up http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
http://i1338.photobucket.com/albums/o699/siness/48f6489a-cf64-461a-9af8-d1c77e2f3f39_zps86532643.jpg
Si
Edited by member 19 Oct 2014 at 19:26
| Reason: Not specified
Don't deny the diagnosis; try to defy the verdict |
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This small area the docs couldn't identify; could it have been your brain? My mum used to say that most men's brains are in their trousers but I don't think it has ever been proven until now!
I know you went out dementing for Halloween .... perhaps it was someone's soul they could see?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Si,
Really good news on the bloods I am sure when Jamie gets back he will make sense of the scans. There is nothing worse than DRs that don't give you answers.
Do you think you may have accidently swallowed your cape.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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I'm pleased you has a good Christmas Si and Ness and delighted that Jamie is such a smart operator and is working in your specific best interests.
I asked Mandy how you were getting on and am glad to see you are your usual positive self, and are kicking the backside out of those new mets.
happy New Year
Lots of love
Allison and John xxx
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love Dave's post ...just so you know Dave I have also booked a non refundable room if Si is momentarily incapacitated I will do my best to drink you under the table...but of course Si superman will be there.
Course I am far too lady like to comment on such matters as a permanent erection other than 50 shades of grey the movie is out on Monday
Xxx
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Si
your Jamie never does anything predictable so I wouldn't show any surprise at what he comes up with no matter how radical or crazy it sounds. I did think that the peroni and chips diet may not actually be top of the list and it seemed to have a slighty debilitating effect on you this weekend ...maybe we got the dosage wrong? not that you could tell from that stonking Sunday lunch.
Seriously though the last 2 months have given you a harsh taste of things not going to plan and I know just how much that rattled your cage, so now you need to move on and get ready for whatever comes next. Knowing you there will be a short spell of FFS, WTF and other utterances not everyone wants or needs to understand and then you will just get on with things in your own way as you almost certainly have had to all your life. You are a true inspiration to a lot of people here (even if your responses seem to be from a very select group of followers, there are many who read and say nothing) You have been the most incredble friend to me as you were for Mick from the first day of knowing you, your family are like my own whenever you need me I will most definitely be there for you with a peroni and chips take away if necessary.
I will be doing the proverbial beads for you on Thursday and as your appointment is late probably into Friday as well.
xxxx
Mo
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Si
one down and one to go, make sure you are on your best behaviour for Jamie if you need physical assistance my boxercise class was awesome yesterday, think I am going to become a middle aged female cage fighter LOL
will ring later or tomorrow morning.
xx
Mo
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Thank you so much for all your birthday wishes.
Met with Jamie last night, all good news http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif PSA <0.01 (that's two years now) ALP 38 Bone scan, no progression, CT scan, no soft tissue involvement.
For those that went to MOS, the question about why he put me on early chemo, that he couldn't answer because of patient confidentiality.
He has had only a couple of patients with very low secreting PSA and with extensive mets, both of them was hormone resistant from the start and both went to soft tissue, he also found similar patterns with other patients be treated by other doctors with similar diagnosis.
So rather than start me on HT and wait to see if i was resistant he chose to go straight to Chemo especially as i had mets at the base of my skull.
As this was two and a half years ago before any trial data was available,he still rates it as one of the best decisions he has made. and me too http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
Best wishes to all
Si x
Don't deny the diagnosis; try to defy the verdict |
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Way back in the early days when you and T were first diagnosed would any of us have given a £50 bet that you would both be here 2 plus years on still standing still enjoying life and giving it ROCK ON TOMMY. None of us will ever know the answers to why or how some men continue to defy the odds. All I can say is whatever you 2 are doing long may it continue. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Loads of love .
BFN
Julie
NEVER LAUGH AT A LIVE DRAGON |
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Sorry Si, I am going to disappoint you.
Do you remember when you told Jamie that Ness was okay with it, and told Ness that Jamie was okay with it, and then you were in a whole heap of trouble??? Well we are not going to let you f*** this one up my friend. According to your latest update, your doubling time is somewhere around three weeks - that's a tad worrying. So what is your plan, and what is Jamie's plan? I need to know both before I commit to one side or the other, I'm afraid :-0 If you force Jamie to go with another of your madcap ideas, the only thing I will be able to do is print off this thread and show the reckless doctors' court that he had no choice. Obviously the reckless doctors' judge will be blown away by Julie's 'who dares wins' approach but it might be more sensible to get the treatment and stick around long enough to mend her fence for her.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Si,
I agree with you about that PSA level. You're on no treatment, and yes, you still have a prostate.
On top of all that your scans have been so good.
In 2010 I had been lucky enough to have been able to have a break from treatment for three years.
Over that time PSA climbed slowly to 7.0 and I was summoned to see my urologist.
I only agreed to attend because my cancer nurses at that hospital had told me that he'd be offering me new scans.
Since it had been five years since the last ones (MRI, CT, bone etc) I was looking forward to seeing what had changed over those years.
It turned out to be nothing of the sort.
After telling me how lucky I was to still be here after he wrote me off in 2005, he said 'Your PSA is obviously climbing, cancer is active again. I could offer you chemo, but perhaps you'd prefer quality of life over such radical treatment".
That was the shortest appointment in my 11yrs of the PCa battle.
I was flabbergasted. Had he actually checked my notes and seen I was on no treatment?
My good outcome so far had nothing to do with his 'wisdom and judgement' (Ha!) and everything to do with my oncologist at my main cancer hospital since 2005.
I think everyone here knows my favourite word, and it took me only seconds to use it.
I told him he was talking complete bollocks and that I wouldn't bee seeing him again, stood up at left.
A month later, when I had an appointment with my oncologist and related the story, he was absolutely furious at what the urologist had said.
Incidentally when my PSA eventually reached 10.0 some time later, my oncologist put me back on zoladex and it worked as well as it had first time round.
You'll do the right thing Si. Informed research and an informed decision will see you through.
It does have to be a 2-way debate with your oncologist, an in Jamie you have that.
Some oncologists, like ours, actually do listen to what we think is best for us.
All the very best,
George
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Morning all from a lovely sunny Newark, my latest update
Still refusing all treatment except Denosumab, things now are starting to move again PSA has gone from 0.22 too 1.6 in five weeks.
So now back to constant pressure to restart treatment and a full week of scan appointments.
Lots to think about, i managed to dump the cardiologist and all the heart meds months ago, they said it was cancer medication induced tachycardia, so if i am not taking cancer meds then i will not get tachycardia and i was right no attacks at all. Three less tablets http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
So prognosis was 2-3 years and no chance of 4 well i have beat that, i might not follow the normal path treatment wise but it works for me.
So lots to think about over the next few days, decisions, decisions http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Si
Don't deny the diagnosis; try to defy the verdict |
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Good luck Si with whichever path you choose to take
We can't control the winds - but we can adjust our sails |
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You've come this far si with the help of your fantastic (and patient !!!) Jamie. I hope he pulls something else out of the hat for you.
Good luck with the bone and CT scans
*****
We can't control the winds - but we can adjust our sails |
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Good luck Si. I do read all these posts more now as it is becoming nearer territory to me. God knows your worries , but to me getting through to spring is good enough before any more angst. I’ve been told maybe Abi and Chemo and I guess I’ll be lucky to be at least offered that. Good luck and enjoy xmas
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I hope the trial comes up trumps for you Si, we are still waiting to find out our next step, Feb 26th for decision on first time out for chemo for us. John has struggled recently with no treatment other than the zolly, it’s very hard to cope with.
You are a real enigma mate
Lots of love
Devonmaid xxxx
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Don't deny the diagnosis; try to defy the verdict |
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Si, we want some of your action .. how did you start Chapter 2 , maybe Sadie could move our Mick's day of reckoning and we could rename it to "every day counts" http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
Your scans continue to defy this horrid disease it is so good to see that someone who has such an awful time at the start is still giving PCa the two finger salute, you really are Si superman and long may you continue to be #1 visitor. Will be great to see you on Friday and celebrate your amazing year of Abbitabs success with a St Barnabas Capaccino at least it is delivered by a machine and not Hitlers daughter.!!
xxxx
M & M
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As a relative newcomer, I did not use the old forum for too long, and am coping with the new design. However, it is clear that experienced members are struggling and their help and guidance would be a sad loss if, as Si, they abandon ship. I hope PCUK can assure people that concerns are being addressed, and give a time scale as to when the changes being asked for can be implemented.
Paul
Stay Calm And Carry On. |
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Can anyone advice on this ( I hope you can see the image) As you can see it's very shrivelled, When I press it it oozes something out of the end. My wife says she definitely won't put it in her mouth.
Not sure what to do
Bri
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well another month another blood test
ALP 39
PSA less than 0.01
Testosterone less than 0.01
Another month of Abbi, happy boy
Si xx
Cant use the less than symbol if you do it will not post http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif
Edited by member 22 Jul 2014 at 19:02
| Reason: Not specified
Don't deny the diagnosis; try to defy the verdict |
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Hi Si
Bloods still indicating in the main that things are still good. Who was the third Doctor? Dr Noidea
Jamie is on the ball so will clarify everything. The old meds are still working mate
I reckon them docs saw your PSA and bone scans and had a discussion along the lines of "I thought this guy had advanced PCA. ...yep he definitely walked in.....is it us or has someone give us the wrong file.....get him back in for another scan, we best find something or were for the high jump"
Lol....see you soon mate
Bri
Edited by member 02 Nov 2014 at 08:32
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You're doing fantastic Si.
As Mo says, look back at the way things were, and here you are now, 'Superman Si'.
It's obvious you had Dr Mute and Dr Stonewall flabbergasted.Too much for them to take in mate.
And Lyn, your trousers comment was wickedly funny. I spluttered tea over my keyboard!
Stay well Si,
See you in London,
George
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Si, stay optimistic mate. I am sure you are still doing well and your scores look pretty good. Thinking of you as I settle down for another night in New Zealand.
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Hi there Si Superman
well the decision to defer your zoladex for about a month so that you could have a great Xmas with Ness and the Girls made a lot of sense. I am hoping that you will have this reinstated in January regardless of next steps along with the Denusomab. I think Jamie is aiming to get any new pelvic mets with RT so that they do not grow rapidly as things must have done first time around. Makes a lot of good arguement to go for chemo if radium 223 is still not available as I know you are both keen to use this along with Enzalutamide. Also I know you have strong views about letting the cancer get active and then hitting the hell out of it with everything including the kitchen sink so if these mets are active then go for it. Your Onco seems to have got a really good vision of your particular cancer and how it is behaving. Thinking back to June 2013 when I first had any nvolvement on this forum you have done so very well among the group of Men in the incureable/advanced with mets group. Reallly does give encouragement to others getting onto the forum now. Medical treatment of advanced Pca is moving so quickly and Jamie is up there on the "cutting edge"
see you next weekend when we must rganise the next Newark bash meantime have a fantastic new Year and thanks for beng there for me right through 2014.
xxx
Mandy mo
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Congratulations Simon on getting through two years on the roller-coaster (as Allister always calls it) and coming out the other end still doing so well.
In Jamie, I think you have the perfect doctor in your corner. As Mo says, he seems to have a really good insight into your particular cancer and its behaviour.
Good luck on your forthcoming treatment and we hope to see many more uplifting posts from you and Ness.
All the very best,
George and Lynn
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Great stuff, Si. So glad to hear your onco sounds really on top of all this, and fingers crossed for an effective treatment plan in the New Year !
Best Wishes, Fiona.
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Hope you and the family had a great Christmas Si. Look forward to seeing you at the next gathering.
Dave
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Well done for sticking to your guns Si...you were adamant that there was not going to be any change in treatment before chrimbo. I'm sure you, Ness and the girls had a great one..
I have to admit I lose track of what treatment options are available or what is best. Having seen what Jamie has done for you so far I'm sure you will be guided by him on your next leg of treatment and as you say you are still in a much better place than when diagnosed
Happy new year to you, Ness and the girls
Bri x
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Hi Si, I have only known u for a month or so online plus the kings x beer but am always so impressed with your ability to fight and your self belief in what to do. You are an inspiration, hope all goes well for you now. Have a great New Year, Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Just catching up with your news. Sounds like the plan is a good one and once again Jamie is showing much innovation in your treatment path. Hope to see progress in the next few weeks. Be great to catch up with you and Ness. I missed the Newark pre christmas meet when it was cancelled! Keep going mate!
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Sorry to read this Si as I know you didn't want to restart Zoladex , I have thought about this and I suspect Jamie has only done this because you covered his room with dog hairs.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Si you know what they say, compromise is so much better than confrontation. I thought you might lose the zoladex battle but now you have a little bit more time to see what happens next.
I enjoyed our little outing to see Julie,Trevor and the dogs and to find Trevor looking pretty good after his recent trials and tribulations.
See you next week
Xxx
Mandy Mo
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Si can't you get hold of Jamie for an opinion...It may have just been an initial reaction to the change. If you can't get hold of Jamie what about the pcuk nurses.
Glad you are feeling a bit better though
Bri
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Anyone wanting to get in line for the man with the prolonged erection will have to queue behind me :-#
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Si, some great news to head into the weekend then, I am beginning to worry about your slightly S&M approach to scans they are meant to be tolerated not enjoyed like a bloody massage or something had you been slurping the Fosters before you went in??
Not sure what the HT imaginary inhibitions are all about, I am afraid that one has gone straight over my head. I am simply not as sharp as I used to be. I think the one hour one to one I had with the Physical trainer at the gym yesterday has finished me off, well that and this no alcohol school nights mallarky ... OMG it is Friday yay hooray glass of wine time and no more gym until Sunday afternoon.
All looking good for Newark, just remind me to point out to the lovely waitress there that Dave does not like eating off a roof slate so can he have an ordinary one !!
It was great to see you looking like your normal self again yesterday
xxxx
Mandy Mo
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Great news Si, the diet is working!
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Really good news Si, I am so happy for you. I have looked up this new scan on the internet but I couldn't find it. The only reference to a SPECT-ST was
S-SI'S
P-PRETTY
E-ELECTRIFYING
C-COME ON EVERYBODY
T-TRY IT
_
C- COOL DUDE
T- TYPE OF SCAN
Was that the one ?
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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This morning I typed up this really cool answerand pressed the tab to post it, it explained away the reason I missed CBs edited comment about his vison of Lyn, where the Holy Grail really is, the Meaning of Life etc. Then you never guess what happened ... got it in one, the website crashed and my darkest wittiest moment was lost forever ...poop
xx
Mandy Mo
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Hello again Si,
I am sorry that you now have to forget about Abiraterone.
Like every other drug, it can work well for years for some, yet be ineffective or harmful to some other guys.in a relaltively short time.
I have seen cases this like before where the heart has been affected.
Fortunately, your results remain excellent. I hope the missing (now found) report shows good news too, and I wish you the very best with your big appointment with Jamie.
Looking forward to a positive post from you on Friday!
All the best,
George
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You have a good bloke in Jamie, he certainly seems to be looking after you, I will second Mo's beads for Thursday. (well prayers anyway!)
Chris.
PS. we still haven't said thank you to You and Mo for organising Newark, so THANK YOU........
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Si
Glad to hear you didn't let the drinking side down on Saturday.
So you've gone all intermittent if only for a short time.
You've got a good man in your corner with Jamie and I am sure he will come up with something that appeals to you although you should give some consideration to a compromise if you are not totally enthralled.
The bloods and scans are good so thankfully you are starting from a reasonable point...be interesting to hear why the radium is not suitable at the moment.
As Mo says you are an inspiration to us all. You always tell it as it is and always there for others.
Let us know what happens at the consultation
Bri
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Quote from Mo
" You are a true inspiration to a lot of people here (even if your responses seem to be from a very select group of followers, there are many who read and say nothing) "
Well I'm one of those who read and shake my head in wonder but don't reply, so this time I will.
Actually, Si, I don't know what to say now. You mean a lot to many people. Your courage and attitude are, as the others have said, inspirational.
Good luck for Thursday
We can't control the winds - but we can adjust our sails |
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Hi Si
Sorry to hear that things are never easy for you at the moment. You are inspirational to newbies like me as you fight everything and challenge. I see the consultants with questions that get responses but always go along with what they say, how on earth do you decide when to stick or twist? I hope all goes well, unfortunately I can't go to the rearranged Cambridge v afc match as I have chemo that day, probably will avoid me watching an embarrassing defeat anyway! Look forward to the next drink session as my wife can't have more than one birthday in a year!!! Stay strong my friend guys like me need to see you post, Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Hi Si, sorry for the delay in relying, l checked a few times but it kept looking like my post was still the last one ... I hadn't clicked things had moved on to page 5!
Wow, what a stressful time you've had. It must be very unsettling. I wonder if abbi is something that you could alternate with (as in periods on/off it like they do sometimes with zoladex?). Not worth it if it's too risky for the heart obviously but it's worked so well up to now... Anyway, Hope that Jamie has some good ideas and that you can work out a plan you are both happy with. It would be great if you could have a break from treatment. You sure deserve one.
Very kind of you to invite us on Saturday, it would have been great to meet you, and the rest of the gang. Unfortunately I'm in London & I've only just read your post so looks like we missed it! Hope you had a lovely afternoon.
You were right, Dad saw one of Jamie's team last week. No news really. Psa up but they didn't suggest changing anything so it's back again in 6 months.
Good luck for your appointment. I'll be thinking of you and will keep checking for updates.
X
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So am I one of the select fewhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
X
NEVER LAUGH AT A LIVE DRAGON |
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I know that the heart business and ending of abby-tabby is not exactly what you dreamed of but it struck me as I read your update how wonderful this bit is
"Bloods are still good, PSA & testosterone all undetectable, bone scan showed no progression"
I guess the Gods are still looking out for you my friend - take heart x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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He has nodded off Si , so no help in an emergency of course he has left his trusted side kick to answer. So my first worry would be twin to twin transfer yes you could be cured of PCA, but and as usual it is a big BUT the side affects off SCC (Skin Colour Change) and not every body suffers from this but you should be aware there are many side affects .
Some people cant handle the SCC as there are many other syndromes that are associated with this . Typical side affects are a strange and inexplicable hunger for Jerk chicken with rice and peas.
The switch to Jazz and R&B MUSIC this is one of the easier side affects of course Bob Marley crops up every now and then but you wouldn't have to grow dreads or anything like that.
So apart from the colour change and the strange urge to throw a hip movement on the dance floor I think you should go for it. I forgot to mention the Barry white voice. So you may well wake up in the morning looking like All Johlson dancing like Fred Astiair with Bob Marley dreads and a seriously sexy Barry white voice. Ness will be so pleased. X
You will be Epic.
BFN
Julie X
Edited by member 13 Feb 2015 at 23:56
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NEVER LAUGH AT A LIVE DRAGON |
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Sort the heart, sort the cancer, sort the beer etc etc.
LOL
I am sure I read somewhere that a curry was in the offing, am I, was I wrong?
Newark seems like an age ago, it's only 2 weeks 'ish, but I would like to meet up and have a curry and a chat again asap.
And maybe have some or a beer.
Come on Si, sort a date out.
manlerve to you, Ness and the girls.
dave
Chicken Shashlik, Tarka Dahl,(fried Otter with Lentils), Pillow race, and a Keemur Naan please. ;-)
User
Hello Si,
I hope you don't mind me joining your fan club. I have been following your adventures with cardiac issues, as well as dealing with the various changes of medication and breaks from meds...as part of giving prostate cancer a hearty 'v' sign!
I imagine there are good days and bad days. Its OK to feel rubbish sometimes...even Superman had low kryptonite spells.
It seems to me that you are a likeable guy, with a tenacious spirit, and lots of friends. Thanks for being so open and honest about what is going on for you...and I look forward to catching up with how you are doing....
Very warm wishes
Sue
Edited by member 20 Feb 2015 at 20:58
| Reason: Not specified
User
It was just a good deed from me and Mo
That's gone horribly wrong wouldn't you know
That leg strap it took on a life of it's own
IF only we had known
It was only just out of my pocket
When it took of like a space ship Rocket
The damage it's done is plain to see
Never mind the Tablet and spluttered tea
A man's lost his eye just South of Crew
It was last seen heading for a Town near You
So DUCK if you see it heading your way
The police said the charges we will have to pay
I've admitted the bad language , he took no heed
It was to help a friend in dire need
AH yes he said but explain this to me
There's a rider less ride on heading for Leeds
You couldn't imagine how much trouble wer'e in
The leg strap's reported over Berlin
The morale of this sorry tale is helping a friend
Could land you in Jail.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
BFN
Julie XXX
NEVER LAUGH AT A LIVE DRAGON |
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Spoke to Si this morning he thinks you and I are bonkers Julie
I can't imagine why
Not going to try and elaborate any more on the leg strap or the ride on in case it makes him laugh too much
xx
Mo
User
That is great news Si. I am hoping that the heart problem has gone away and hope you can stay drug free for longer. you are closely monitored so your moaning will at least be checked by some objective data! You mentioned in another thread that you may be looking at cabitexal so don't know if that is a likely next step or not! But plenty of options when you need them.
Edited by member 20 Mar 2015 at 15:04
| Reason: Not specified
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Nice to read about this latest news Simon,
Hope you all have a great weekend.
dave
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Simon, this is terrific news!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Enjoy your well deserved treatment 'treatment holiday', and I feel sure the break from the meds will do you the world of good.
It will give your body a rest and the time to build up again.
As has been said, you're being well monitored and we know you have an excellent oncologist.
Really looking forward to seeing you, Ness AND Sir Jamie at The Mill in a few months time.
All the very best,
George
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SHUT THE FRONT DOOR,
I hope you have seen the heart Guy Si , this is not sorting it's self have they said what is the next step ? Please don't tell me that you haven't seen anyone. It is obviously not meds related.
Mandy is going to kill me.
BFN
Julie X
I am not finished yet I will be back. X
NEVER LAUGH AT A LIVE DRAGON |
User
Sorry to hear this Si. I know you thought you'd turned a corner.
Perhaps it's time you and the heart specialist had a conversation about the alternative treatment so this issue can finally be sidelined.
Good to hear you are having scans to keep an eye on the PCA though and good that Jamie is keeping a close eye on you.
If you want to chat or anything you know where I am
Bri
User
Ho Simon,
Thought all this was sorted matey? How are you feeling though, is what matters?
Will see you at the Run Day, I hope?
In the meantime, I shall have a beer with you tonight!
atb
dave
Edited by member 27 Mar 2015 at 08:12
| Reason: Not specified
User
Si just look after yourself mate, you know in your heart (no pun intended) what to do. Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Si,
Just caught up with the latest I statement. Sorry to hear this you have enough on your plate. It does not appear to be responding so maybe need a surgical solution. Get well Si. Thinking of you.
User
Brilliant news Si, bloods as always are well" SUPER WHAT MORE CAN I SAY".
Writing a book is a brilliant idea, I would read it you could even throw in a few stories about the ride on , it could be a best seller, we could colaberate.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif. This time next year we could be MILLIONARES.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
As for the Fosters diet what I would say is don't knock it untill you have tried it, it knocks the Turmeric into a cocked hat. Sounds like my kinda food chuck in some Rib Eye and we are SMOKIN.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
I am going to miss seeing all of you Guys at MOT's I so wanted to be there but as I am the only Mid woof on call I will be needed here buuuuuuuuuut if the puppies come early then who knows I may well make a surprise apperance, watch this space.
So glad you posted lots of love as always to you Guys.
BFN
Julie X
Edited by member 13 Jun 2015 at 22:08
| Reason: Not specified
NEVER LAUGH AT A LIVE DRAGON |
User
Si,
Those results are OUTSTANDING!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Your partnership with Onco Jamie is a real winning combination.
Just have to tell you that Lynn and I are delighted to see these incredible figures.
As someone said, you give hope to everybody.
Looking forward to seeing you, Bri and Kev at The Flyer soon.
And in 2016. 2017 and on and on!
All the very best,
George
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User
User
So here we go, 7 weeks now off HT PSA <0.01 ALP 41 Testosterone <0.04, Not noticing anything improving much will see what happens in the next 4 weeks
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Lyn, I cannot tell a lie. I often mull things over (for quite a while) before I mention something to either of them.
Procrastination I suppose is the best word.
I'm seeing Onco Ian in a few weeks time and am ready for the 'Boro' fan mockery of Sunderland.AFC. ; )
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User
Oh my oh goodness , my friend and WingMan this may be the end of a wonderful friendship you may not come out of this alive. You are in deep Doo Doo my friend even with a sorry face and a coat hanger on your head I fear your chances of leaving this appointment with everything intact , well to say your chances are slim would probably be an exaggeration
Stay calm that is my advise, facing Jamie will be far easier than fessingup to Ness, let's face it you don't have to travel home with Jamie and he doesn't have a black belt in Origami 😉
Ok so I have given it some thought and I know that liars never prosper but option
A , I would tell Ness the appointment has been rescheduled at a time when she can't make it, obviously standing on one leg and holding your ear at the same time
B, phone Jamie in advance and offer a huge monetary incentive to keep shtum.
C, If Jamie won't be brought with money , then offer your body to medical science .😜
D, Fake a very important phone call at the moment of revelation, IE (HRH needs to speak with me with about a knighthood)😳
E, if any of the above fail I always find that blaming some on else in these circumstances is a go to response IE , Lyn, Julie, Mandy told me to do it. This way you can shift blame and make yourself look like a victim.😇.
D, Take a cardboard cut out of yourself and on the day , whilst you are hiding in my loo.🤓
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Another site glitch in that it shows the last post at page 10 of 10 pages, and page 10 is not found.
Not sure what meds you are on at the moment? A cocktail of guts, nerve, audacity, adrenaline, with a base of Fosters.
It's working for you mate, long may it continue to do so. I am not sure I would have had the courage?
Hang on, Courage is bitter, You don't do Bitter! :-)
Have a great holiday in that there Europe! PMSL
x
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
I heard Jamie needs counselling after each review with you Si?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good to have you back Mo, hope the holiday went well, biking in that lovely sunshine http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Russian roulette no that's not me, lots of research and informed decisions http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Instead of two days at hospital i could be fixing Julies picket fence.
Don't deny the diagnosis; try to defy the verdict |
User
Thanks for all your replys really mean a lot
Just back from a great two weeks in Majorca jet skiing and banana boats are great fun 😀
So the cancer thing needs addressing psa results for the last 8 weeks 0.09. 0.184. 0.21 and today 0.67
My meeting with Jamie before my holidays was quite interesting with him insisting I should restart treatment in my return from holiday but to me the results look fine I have managed nearly 9 months without treatment and still loving it and more than happy playing Russian roulette
So appointments cancelled for restarting HT and will look forward to seeing Jamie mid September 😀💕
Si xx
Oh ALP result today lowest in 4 years 35
Don't deny the diagnosis; try to defy the verdict |
User
Oh Superman,
Still defying the verdict😉 And doing it in your own way in your own style . I have got to give it to you , you are one heck of a guy. Bring on the Fosters.
Loads of love
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Just a quick update,
After being off HT for nearly a year and with my PSA rising quite quickly and the only person that thought i should stay off it a bit longer was me, i succumbed to the pressure and restarted HT.
My first injection was 8 weeks ago with my PSA at 1.2 after four weeks it was 0.4 then it went to 0.11. I met with Jamie last week and armed with these good results i was going to stop HT again and not have the December HT.
But after nearly 4 years with Jamie i believe we are beginning to understand each other, as soon as i sat down he just said great results we will stop HT wait for it to rise to 2.0 then we are going right off piste.
Best meeting ever the nurse said your eyes just lit up http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif so with a prognosis of maybe 3 years but definitely not 4 we continue, not sure of the plan it is still under discussion.
We all get dealt a hand and it is down to us how we play it, i just choose to play it my way, and with a great Onco as my wing man.
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Si,
I'm with you 100%.
You dare to go where......etc etc.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
I feel as you do. We know our bodies best, know when a medication is doing us more harm than good, and also know that we're sensible enough not to take stupid risks.
Gut instinct is a great thing.
I know it's not for everybody - some cancers are terrifylingly aggressive.
Those really do need extreme caution and the best oncologists around.
But if we realise our stubborness is working for us, then we're very lucky guys.
We know we can never be cured, but at least we can keep on top of our cancer for much longer than we were told at diagnosis.
If only all PCa was the same. The day will come, hopefully soon, when immunotherapy will be available to all.
That is the only way that our unique cancer cells will be erradicated.
It can't come soon enough. We have lost far too many good men in the time we've been on these forums.
So. keep on doing what you're doing, Si.
What you've achieved so far is quite incredible.
All the very best,
George
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So another PSA test yesterday it is now 3.25 so doubled in 10 days so better than x5 in 4 weeks
Got my scan results yesterday CT all ok no soft tissue involvement
Bone scan not so good. 5 new tumours 2 have grown bigger and 2 have disappeared 😀
So Jamie tonight should be a good chat let's see what he has got in his bag of goodies
Si
Don't deny the diagnosis; try to defy the verdict |
User
Well a nice 45 minute discussion and we have a plan that i will most probably agree to tomorrow.
Start bicalutamide tomorrow, this i will not do, never have.
Zoladex injection next Friday, Yep http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif Just one
Week Monday start 3 cycles of Cabazitaxel
And after that if PSA goes back to undetectable and scans show no progression then i can stop treatment again http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Happy with that
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Quick update
Didn't quite do the plan thought I would give the zolodex a miss for now I am sure Jamie will be fine when I see him Thursday
So last Monday I started cabazitaxel with my PSA at 4.6 and my thought was to forget the HT for now so that my cancer was all bright eyed and bushy tailed for when the chemo arrived rather than being subdued with HT
So what can I say about cabazitaxel well quite different side effects from docitaxel but not to bad. No need for all the steroids that I used to take before docitaxel which is great as I don't really like steroids
So bloods tomorrow and will see what the psa is if it is around 5 ish then the ht can wait. At the moment I am hoping to get the psa to below 1 by 4 cycles and that will be me done kids break up for summer and it's fun all the way
Still got a few months worth of Abbi that I might throw in the mix if the psa is a bit stubborn
So far in 41/2 years I managed over 2 years with no treatment and I quite like it so this will be a short sharp hit with all the nice things I still have in my cupboard 🤠🤠
Xx
Don't deny the diagnosis; try to defy the verdict |
User
Quick update for anyone else going on Cabazataxal;
Before starting my PSA was quadrupling every 4 weeks, so my starting PSA was 4.6 but i made the choice not to take HT. i read a really good article once about the take up of chemo between dormant and active tumors, and looking back to when i first had chemo over 4 years ago this was started only one week after commencing HT and i had great results back then.
So after the first week of Chemo my PSA came back as 4.79 so only a small increase, my second cycle is next Monday and if the PSA is still similar then i will leave the HT for another month.
So far there has not been much difference with Docetaxel,
Si
Don't deny the diagnosis; try to defy the verdict |
User
Hi David
Yes side effects, i find the taste issue a bit easier this time and not being a great fan of steroids you only have some via the drip no tablets
But it has only been one cycle http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Don't deny the diagnosis; try to defy the verdict |
User
I heard that in Southend on Sea you can buy Ankle Spanx in natural skin tones or tangerine?
Edited by member 09 May 2017 at 00:24
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Going to have to teach you to speak proper Essex. It's not Southend (best BBC accent) my dear, it's Sarfend!
User
Thought it was time to update my Cabazitaxel Journey, so far three cycles and if my memory serves me well it has been slightly better than Docetaxel, my sleep is much better and the odd taste is much improved.
24/4 Chemo #1 PSA 4.79 ALP 79
15/5 Chemo #2 PSA 4.89 ALP 78 not what i was hoping for, might need to introduce HT after all, will wait till next cycle
5/6 Chemo #3 PSA 1.22 ALP 70 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif that's Better.
So we are going for a slight intermittent Chemo i will have cycle 4 as normal then stop for the school holidays and have my last two cycles starting the end of August.
Best wishes to all
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Great to see the drop Si....you will have a great summer with your girls
Bri
User
Si Superman I have no idea if a take a break chemo is a good idea but as always I am one hundred percent behind you .
Scores on the doors are Supercalafragalisticexpialadosous.
Any time you and the girls want to visit just let me know the draw bridge will be open 😉 Puppies are here.
BFN
Julie XX
NEVER LAUGH AT A LIVE DRAGON |
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I admire your free spirit Si. I get where you are at lol. And you have obviously a great Onco and relationship with him. I see my new Onco properly on Wednesday and I'm hoping it's just psa and left off treatment !! My only worry is endless aches and pains in both my legs and hips, but in honesty it could be because I'm working again as a Healthcare Assistant and its bloomin hard graft. Keep strong brother 👍
User
Hope the rest of the treatment goes well and that you have a good debate with Jamie before final decisions. You say no HT but then say Abbi, isn't that a form of HT. would they switch you to enzalutimide, working well for me? Await with interest your next steps! Good luck as always
Edited by member 26 Aug 2017 at 11:52
| Reason: Not specified
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So you knowI have I been holding back from posting ( I have been trying to research a plan ) and the fact is I have come up with diddly squat and , didly squat being an old army saying means if you have no idea what to do next then go back to plan A.
Plan A being obviously steak and Fosters it's served you well in the past and it's tried and tested 😉
Si my lovely friend you are the plan , you are the controller of your destiny and a true SuperMan . ❤️
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
So not sure what you might do next. Sounds as if you need something? Abby again, enzalutimide or..____be interested to hear what is resolved with J. How are you feeling? And what are the scans like? They will be as important as the PSA.
My turn next week, feeling good on the enzo
User
Hi Si,
Is going back on Abbi an option ?
Trevor has tolerated it really well and it's been over 2 years now .
I am sure that by the time you see Jamie one of you will have a plan.
Always thinking of you.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Si
Sounds a bit tipsy turfy.
I'm still on the enzo after 3 years and it's still working for me.
I don't know if it's an option for you but it's certainly better for me than the abbi.
I hope it all doesn't spoil your Christmas with the children.
All the best
Paul
User
Si
I don't understand all these different medications, but I am sure you and Jamie know what you are doing. Take care of yourself and your family.
Thanks Chris
User
I'm pretty confident when you and Jamie get your heads together you will come up with something be it orthodox or unorthodox
How do you feel in yourself Si
Bri
User
Sorry to read that the PSA is not behaving itself. Don't beat yourself up for not having any different thoughts, you have had more than most of us over the years.
Jamie has always sounded a top onco so just trust his judgement.
Hope the scans show no new news.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
I’m rooting for you Si all the way. I think my Onco doubts me a bit but read my notes properly and understands my mind as well as my cancer. Good luck
User
Hope after the scans you and the onco can agree a way forward. Best wishes, Ian.
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You are very well informed Si but so is your onco. So listen openly about all the results and what he suggests, you never know he might have the right idea. Shame that the chemo, though tolerated, appears less successful. Hope white smoke emerges from your meeting.
User
Sorry that the bones are active but no soft tissue a massive positive, probably all the fosters in your organs taking out the cancer!
Take care mate, always thinking about you.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
John is having Radium 223 Si, his ALP fell like a stone but his PSA is now 55. He is well though so all good really. Just wondering why you wouldn’t be interested in doing it alongside perhaps some other treatment?
I assume that’s allowed.
Cheers
Devonmaid
User
Rocket is on its way , handle with care on delivery don’t let it linger in the post box it might just blow your front door off.
Loads of love
Hope to see you soon. X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Good luck with the Abbi Si.
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Si
Hope all goes well with the treatment and not too many side effects.
Thanks Chris
User
Hope it does the trick and the side effects are kept at bay Si.
Hopefully see you early in the new year
Bri
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Sorry to hear that you need to start Abbi again, fingers crossed it does the job for a long time.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Good luck with the Abbi Si
I hope it's as side effect free as last time and that Christmas can be enjoyed as much as possible
Edited by member 10 Dec 2017 at 11:06
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Thinking of you Si , you had a good run on Abbi last time .
Fingers and toes crossed for no side affects and a reduction in PSA.
Love to you all
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Good call Si, hoping the Abbi does the trick again. I assume John will go on it soon or chemo. Latest PSA is 77 and still no new treatment here.
Good luck mate, you’ve dodged it well so far and I’ve no doubt you can keep it on the run.
Love Devonmaid
Xx
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Si
Everything crossed hoping Jamie can help your long term fighting spirit get that PSA back down.
Ray
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We can't control the winds - but we can adjust our sails |
User
Not sure what prompted me to look in tonight maybe a gut feeling 😜
So not the best news , what is the flood and starve thing ?
Always thinking of you .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Si sorry missed this. Scary times yeh !! Not sure what to say really except I can only hope the best for you and a new plan. I have bone and whole body CT booked end March — surely they’ll find something this time ?? I hope you feel well in yourself although I get the mental torture. It’s like a millstone isn’t it. Keep fighting friend
User
Hi Si, sorry to read that PSA is not playing ball.
I did read a while back about testosterone overdose and in the vast majority of a small trial there was great success so hope you can sit on Jamie and make him find a way.
Always rooting for you.
kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Si, is docetaxel a possibility again? I have also read about the flood & starve theory; let’s face it, your cancer has never played normally so maybe you are exactly the person to try this. Fingers crossed Jamie goes for it x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi AC
No trials in the UK only America and i think a small one in Germany, i am in email contact with the oncologist running it in the U.S and i am sure this is the route i will be going down
Lyn yes i can do Docataxel again but i do not want to do it during spring and summer i will try to get through to September/October and give it a second go them
Thanks All
Si
Don't deny the diagnosis; try to defy the verdict |
User
Thanks Roy
In my eyes it’s cheap and worth a try I have loads of information back from the trial team in America just need to get it past Jamie
At the end of the day it will either be a feeding feast for my cancer or HT will work again with or without Jamie I will be doing it
Could be fun at least
Steve
Sorry to hear that but you just can’t come barging in to our exclusive club as Jamie once said to me if you had just three mets I would still be trying to cure you so grab everything that’s available and go for it
But if you still wish to join us you are more than welcome
Don't deny the diagnosis; try to defy the verdict |
User
Si,
I spoke today to my usual Oncology Nurse and he advised that my oncologist has treated a patient in the "flood and starve with testosterone" method and the patient did very well, before returning abroad. I won't go into the question of whether he paid the NHS for his treatment! Now that isn't much of a sample but it tells me that you don't necessarily have to be part of a trial to get a legitimate and inexpensive treatment about which NICE probably wouldn't be concerned. Why not just ask Jamie if he'd try this approach? I propose to do just that with my bloke if/when cabazitaxel fails.
Incidentally, I have confirmed that cabazitaxel suppressing PSA only after a couple of cycles is not at all unusual so here's hoping that I add to those cases!
AC
User
You already knew that you were in a rare situation and I think Jamie has proven himself to be a crackerjack.
Would like to be a fly on the wall at the appointment though. Good luck x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks all
Lyn
RT was totally out of the blue but not for me
The biopsy of a tumour was just for the panopanib
Psa doubled in 4 weeks now 5
My choice will be the flood and drought testosterone Jamie just needs to find out a couple of more bits
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Hi Si,
Hope it goes well.
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
You are certainly at the frontier Si. It will be interesting to hear how it goes.
You have an amazing oncologist.
Hope this works for you, Ian.
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Good luck Si
I will be following your progress with interest.
I admire your pioneering spirit and that of your Onco
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
Thank you Dave and Ian for your comments
I will start a new threat for this treatment but i feel great this morning best sleep i have had in a long time.
It might be the most stupidest thing i have done as well
I felt that good i got my wellies on and my thickest jumper and was about to head off to catch up Irun but realized he had finished https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif
Don't deny the diagnosis; try to defy the verdict |
User
I think it’s great you are feeling in some control , yet not being told you are stupid in your decisions. And your Onco seems to have a god like status. It’s definitely important that people like you also keep them on their toes with treatment updates. It’s so true that you can be treated totally differently wherever you are in the country which seems a bit messy. And some Oncos just put you through treatment plans for the sake of it without listening to the individual. I like yourself have had to drive for a lot of treatment thinking.
Best of wishes and don’t turn into the Hulk :-))
User
Hi si followed your posts with interest, I salute you si your definately a pioneer and up there for putting yourself at the forefront of trialling this as it will benefit and inform so many men..thank you for sharing your journey with us si best of luck. Jo
User
Best wishes in the next stage of your journey ,it’s because of selfless men like yourself that hopefully will benefit others .
Will be looking out for your updates
Debby
User
What a team that you and your onco make. I really hope this works out well for you and there will be many of us rooting for you. I take my hat off to you.
User
Si, go for it. You're blazing a path for me probably and who knows else. I shall watch developments with interest and bitten nails!
AC
User
Poor Ness - her nerves must be shattered
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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A Serialisation! Looking forward to a long book with loads of chapters, maybe even a trilogy.
User
Hi Si,
Good to see you have moved across successfully although not sure you are in the right place....."Dying from Prostate Cancer" indeed.
I reckon you've got more chance of getting run over by a bus, especially after your recent good news.
Seriously I hope all continues to go well, and despite the main heading remember:-
Life is for living
Barry ((alias Barrington )
User
Don't deny the diagnosis; try to defy the verdict
Why have you deleted your strap line Simon? It's inspiring.
dave
User
Bugger well spotted Dave, i am off to find it
See you at Leicester ??????????
Don't deny the diagnosis; try to defy the verdict |
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Agree with Paul. I think this will be a loooooonnnngggg thread
Bri
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May move our thread to keep you company !
Love, Fiona.
User
Like Fiona I have also thought of joining you Si. Just to keep you company but.
A . I thought it might get a bit crowded.
B. I wouldn't have a clue how to do it.
I am still trying to fix the avatar.
Good luck for results.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Same here.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif
User
Hi Si -- I'm going to lock your thread in the archive so it's still visible but people have to come here to reply, so the conversation won't be split in two. I'll post a link there to the new thread before I do. If you don't want that just let me know and I'll unlock it.
Best,
Sadie
User
Someone in his 40's eh, what do ya reckon he was after Si.
Great news though mate, if I dint have such an early start I'd raise a few for you. Maybe tomorrow :)
Bri
User
Si, we want some of your action .. how did you start Chapter 2 , maybe Sadie could move our Mick's day of reckoning and we could rename it to "every day counts" http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
Your scans continue to defy this horrid disease it is so good to see that someone who has such an awful time at the start is still giving PCa the two finger salute, you really are Si superman and long may you continue to be #1 visitor. Will be great to see you on Friday and celebrate your amazing year of Abbitabs success with a St Barnabas Capaccino at least it is delivered by a machine and not Hitlers daughter.!!
xxxx
M & M
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Hi Si,
So you are still on the dark side, you might be Superman but you are a stubborn old mule. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif-Or maybe that is me just not wanting you to be here.
Still trying to resize pic for my avatar and it is still saying exceeding 2mg or something like that. May have to email for help.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Great news Si. This is a great fight back long may it last!
User
wonderful to see you today #1 visitor, Mick was really much more perky after your visit. He thinks your blood results, scans etc are awesome and so do I , a walking miracle if ever there was one.
Going to try and do a new thread fro us and link it to the old one, running out of imagination for the title though.
Will chat with Julie this weekend about about photos and possibilities for a Leicester day pass.
Love you and love to the girls (including Ness of course)
xxx
User
Absolutely delighted by your results Si, I continue to be amazed by how this disease works, you hear those words Gleason 10 and think it's game over, well we have some evidence between us that this isn't so.
So looking forward to meeting you at Leicester, our miracle man indeed.
Lots of love
Allison
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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This sort of stuff scares me http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif why is all his post been edited ??? why has Si removed his profile ???
I've been coughing up blood today ... i know I'm not in a good way ... but i worry about other people http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif
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Hi All,
To save Ness from my constant moaning, and my obvious lack of computer skills, i am going to take a break from the forum
Best wishes to anyone with upcoming treatment.
Hope to see you all at Leicester
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Shocking that someone who has had the benefit of support from others and then been able to repay that ten-fold by giving hope to others who join us with dire diagnoses feels forced to remove their profile and recent posts.
PCUK, do something please to resolve people's concerns about this new forum before it is too late!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Si and Ness
I suppose if you are not here you will not see what I post .... You are both fighters, fellow battle comrades and the best support anyone could ever hope to find. You give Cancer the biggest kick up the backside but you feel challenged by a computer forum ...come on get with the program help all of us to keep pressing the forum designers to make things more 'Giffer' friendly and to link our old threads to the new forum.
As you know I am a lady who is not for turning (forgive the use of the Late Maggie's phrase)
Sadie et al at PCUK ...please listen to us all and work with us to make things better it would be tragic if the long term contributors who have a wealth of support and knowledge to give others abandon ship
Mo
User
As a relative newcomer, I did not use the old forum for too long, and am coping with the new design. However, it is clear that experienced members are struggling and their help and guidance would be a sad loss if, as Si, they abandon ship. I hope PCUK can assure people that concerns are being addressed, and give a time scale as to when the changes being asked for can be implemented.
Paul
Stay Calm And Carry On. |
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Hi all,
I don't anything more about why Si has removed recent posts or has taking a break -- we're really sorry to see anyone not use the forum if it's beneficial to them but understand that sometimes people do need a break for a number of reasons.
I wanted to thank everyone for bearing with us through the bugs and quirks that have been discovered since launch. I've just posted as much on other threads but I wanted to tell you all we really appreciate the feedback and are making changes.
Our developers are working on a whole load of fixes right now -- everything people have reported we've reported on to the developers and they have booked in time this week to fix a whole raft of issues that weren't discovered until after we went live, including: repeated logouts, conversation titles disappearing, confusing 'confirm topic' button, inability to delete own posts, and more -- some of this has already been fixed.
We're also going to be adding the list of all topic areas back to the Community Home page, so it's on the first page you see when you log in. Some users have complained that it's harder to find their way around, and we think putting the topic areas list right on the homepage will make it feel more familiar and like the old community space in terms of getting around.
Thank you to everyone who has helped with the process and to everyone who's giving feedback on the new site. Please stick with it and help us get everything right.
Best,
Sadie
User
User
Just thought i would post my bone scan from when i was diagnosed January 2013 for anyone newly diagnosed with mets. The black bits are the cancers but 18 months on i am good, six months of chemo and currently 11 months on abiraterone, PSA and testosterone still undetectable and ALP at 40.
So even when you get a crap diagnosis don't give up http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
http://i1338.photobucket.com/albums/o699/siness/48f6489a-cf64-461a-9af8-d1c77e2f3f39_zps86532643.jpg
Si
Edited by member 19 Oct 2014 at 19:26
| Reason: Not specified
Don't deny the diagnosis; try to defy the verdict |
User
Look at you getting all technical. Good post Si and will give hope to others.
I've sent you a private message mate
Bri
User
Thanks so much for your post, gives some hope for me with Neil now having third chemo tomorrow. Am also checking ALP !
Love, Fiona.
User
Hi Si,
Great to see you back posting. Fantastic news re your scores, you certainly are Si Superman but I have to say you look better with your clothes on.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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I recognized you instantly! Amazing how you managed to post that as jpgs not supposed to be allowed but this is so helpful for others. Really helpful Simon and I am so glad the dummy is back in the pram and you are back. You know how inspirational you are to others. Great stuff!
User
Brilliant post Si, although I am horrified at the idea of a forum littered with photos of wounds, stitches or (God forbid) images bodily fluids, thank goodness for the blip in the system that allowed you to put up these scans. You are a walking miracle and long may you keep amazing us all x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Bloody hell Si you did not look like that yesterday when I had tea with you Have the Daleks got into your house or what?
Seriously though It is so good to see you posting again and such a technical and encouraging post for others with advanced PCa and extensive mets.
Love you all loads #1 visitor Si Superman.
xxx
Mo
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Can anyone advice on this ( I hope you can see the image) As you can see it's very shrivelled, When I press it it oozes something out of the end. My wife says she definitely won't put it in her mouth.
Not sure what to do
Bri
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Ha ha ha ha ha ha. Brilliant Bri, you had me going for a minute :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Love it Bri , now i was going to put scan pics up after Chemo just to show how well it can work but not sure what mood Barry is in i think i have pushed it a bit doing one http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif
Don't deny the diagnosis; try to defy the verdict |
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You Saucy Bu&&er Bri and before breakfast.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
Yes Si before and after pics are you going to have your clothes on this time.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif Barry won't mind they are not holiday snaps, just you in the Buff.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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I thought these were the before & after comparison! Why do you have two fronts and two backs?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Si go ahead and post i am sure Barry will not mind at all he would more than likely encourage you.
Xxx
Mo
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So here are my scans taken in August after chemo (last ones promise) and if there is one bit of advice i would give anyone starting out on this Journey is pick a good oncologist, we spend months picking a new house spending endless weekends viewing properties if we want a new car we don't have the first one we look at, but get diagnosed with cancer and we take the first oncologist that comes along and believe me like most professions there is some right rubbish out there.
They say that we should not name medical people on here and i can understand that when they are a pile of shite but i think good ones should be named to help newly diagnosed people.
http://i1338.photobucket.com/albums/o699/siness/36c8fb68-32ed-4fa8-9d0f-822a1f6aa5bb_zps0c13d344.jpg
PS i have managed to cross out my hospital number this time without going over my birthday http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif just dreaming of all those JP books coming my wayhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
Don't deny the diagnosis; try to defy the verdict |
User
Nice one Si. I'm sure that will encourage others.
Just want to say that re my dilemma above that the Tunisian waiter explained it was a stuffed fig and was supposed to ooze when bit into :)
Bri
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Simon,
Good on you for giving real hope to everyone newly diagnosed with bone mets.
And you are so right about finding a good oncologist.
If you're lucky enough to get a good guy, he can become the most important person in your life - after your missus of course!
It's a pity we can't name our 'good blokes' innit?
As for Brian and his stuffed fig?....Our Bri isn't The Messiah, he's just a 'very naughty boy'.
Typical 'Life of Brian' stuff - and I love it!
George
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Spot on about good oncologist. Wish Neil had our second opinion guy last June, suspect he would have had Neil straight on chemo and possibly would have bought us a lot more time. Loved the post about the stuffed fig, Bri !
Cheers Fiona.
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I am so glad you said that first Lynn, re number of bodies , I am sure there is a obvious answer and Si will tell us but for now I can only assume that Si is an alien with 4 bodies.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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I have no idea, with all of my scans there are 4 images, now you have mentioned it i will have to find out unless someone on here knows
Don't deny the diagnosis; try to defy the verdict |
User
Si you look so Skinny you need pizza, kebabs and fosters xxx
User
Si, good to see you back on the forum
I am guessing, but could the second two be taken after you have contrast injected?
Paul
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OK time I stepped in! As you all know I am very much against holiday snaps being shown but if these pictures are how you look after going on an all inclusive holiday to Outer Mongolia then all is forgiven. Seriously they do give hope to others and I can see punters trying to download them and taking them to their specialist to compare with their own scans on their next appointment. Bri, unfortunately I can't see your picture, perhaps that is fortunately, but I gather it is of a dried up fig. I am using an iPad so perhaps that is why.
Going back to the scans I think Paul is right in that the 2nd two are after the contrast has been injected. Whatever like Allister (Alathays) who has extensive mets throughout his body yet still enjoys life and continues to take part in a number of activities, your scans Si give hope to those who are worried that any metastasis is automatically the end. You have shown that that is far from the case. Prostate Cancer is a funny old game, not in the Ha Ha sense, but in the way it is so diverse and goes down so many paths, if caught early enough it can be cured, later down the line it can be controlled. I have played the game for over 15 years, I might be about to lose the battle very shortly but when I was diagnosed all those years ago, 5 years was the initial target, never dreaming that the 5 years would be trebled. So I think newcomers should look at the positives and hope that we three and so many more bring, so as always,
Life is for living
Barry ( alias Barrington )
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I have moved this post to the start of a new thread.
Paul
Edited by member 05 Jul 2014 at 19:22
| Reason: Not specified
Stay Calm And Carry On. |
User
well another month another blood test
ALP 39
PSA less than 0.01
Testosterone less than 0.01
Another month of Abbi, happy boy
Si xx
Cant use the less than symbol if you do it will not post http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif
Edited by member 22 Jul 2014 at 19:02
| Reason: Not specified
Don't deny the diagnosis; try to defy the verdict |
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Your abnormal you :)
Keep knocking it into touch mate
Bri
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Si, what fantastic results mate.
I'm really chuffed to read this latest update.
So you'll be on form in London on Dec 3d, huh? : )~
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