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Simon Story Chapter 2

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User
Posted 26 Mar 2015 at 22:17

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
Posted 26 Mar 2015 at 23:41

Hi Si,

Sorry you're still having heart problems.  I know what a nuisance it can be.  You just don't want anything else on top of dealing with cancer.

Hope things are resolved soon for you.

Take care,

Steve

User
Posted 27 Mar 2015 at 03:35
Ok so here I am middle of the night in los Angeles minor panic that my lovely friend is going through this horrible carp and I am not there for him. However I have faith in all the Newark gang to do the right thing.

Si I am rooting for you

Xxx

User
Posted 10 Apr 2015 at 23:35

How did yesterday go Si?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Apr 2015 at 23:42

Hi Si,

had a beer for you this evening.

Tasted sweet.

atb dave

User
Posted 11 Apr 2015 at 08:35

Sorry for the late update, Easter holidays young kids and great weather.

So 12 weeks with no treatment and the bloods last week, PSA and testosterone undetectable and ALP 42. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif No tachycardia's for three weeks so i think they have the meds right at last.

So at the moment i feel the best i have since i was diagnosed and this now makes for a few difficult decisions.

CT Pet scan last Thursday and Bone scan and SPECT CT scan this Wednesday and Jamie Thursday night, well after a great day on Thursday at Alton towers we arrived just in time for the appointment, a bit mucky after to many trips on the water flume but a happy family.

CT PET scan picked up a couple of dodgy lymph adjacent to the splenic flexure but the jury is still out.

Bone scan is unremarkable (love that word) but activity in L5, and right hip.

SPECT CT activity in some of the sclerotic metastases but also some shrinkage http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So with all the treatment lined up in front of Jamie, Zoly, Abbi, Denosumab and steroids i thought bugger this we are having too much fun and feel bloody great so declined it all.

Will have another chat next month, i am sure Jamie was fine with it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Another full week of activities planned for the last week of the girls holidays .

Cant quite get my head around undetectable PSA but activity in the bone http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si xx

 

   

Don't deny the diagnosis; try to defy the verdict
User
Posted 11 Apr 2015 at 09:11

Messaged you Si but so pleased you are feeling so well. Love the fact you are in control but also know you will listen to Jamie.

Bri

User
Posted 11 Apr 2015 at 09:25

Unremarkable who ever invented that terminology , no one my friend could say you are unremarkable. So good news all round the blood results as usual are REMARKABLE.  As you say it is difficult to get your head round those blood results and bone activity . So glad that the heart issues are settling down.

So that is you and your twin sorted http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif bring on the summer.

BFN

Julie X

see you and the girls soon X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Apr 2015 at 09:49

Bring on the summer, indeed - this is great news Si although I reckon Jamie needs a couple of Valium after every appointment with you.

Re the PSA, I become more and more convinced that if they could biopsy your mets, they would not find adenocarcinoma but one of the rarer forms. Perhaps (many years in the future) you could donate your miracle body to science so that Jamie can get a proper look around in there and learn something that will help find a cure?

Did the school thing get sorted yet?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Apr 2015 at 10:33

This is such wonderful news and another drug holiday what a treat. Don't overdo the holidays though you know Jamie makes sense. Have a wonderful day basking in these results and let others ponder over the paradox of met spread and PSA. More evidence that OSA is such a complex and contradictory indicator. What with Trevor you make such a wonderful pair of successes, long may it continue.

User
Posted 11 Apr 2015 at 13:00

Si,

That's really great news.  Really pleased for you.  I think that you're planning another busy week of activities with the kids shows how well you must be feeling.  Have a great time.

Steve

Edited by member 11 Apr 2015 at 13:01  | Reason: Not specified

User
Posted 11 Apr 2015 at 13:07

more fabulous news with much more info than my sneaky preview.! i think Lyn will be checking Jamie out at MOTS he will  have progressed to a little something from Amsterdam to calm his nerves pre Si visits by then.!

can't wait to see you Tuesday for a  celebratory cuddle and cuppa.

 

xx Mo

User
Posted 11 Apr 2015 at 19:11

Remarkable! Great news!

flexi

User
Posted 11 Apr 2015 at 19:26

Many thanks for your comments really appreciate it.

Lyn, the schools appeal is penciled in for w/c 4th may.

i think i will be restarting treatment in 4 weeks time, i was hoping to go longer but with no help from my PSA i am not sure if my nerve will hold.

Mo, Jamie was fine i didn't hang around to hear his arguments for restarting treatment my mind was made up, see you Tuesday

Si x 

Don't deny the diagnosis; try to defy the verdict
User
Posted 11 Apr 2015 at 19:47

Looking and sounding good Si, long mat that continue.

cheers, with a beer to you!

dave

User
Posted 11 Apr 2015 at 22:04

Si,

 I know it is some times difficult for others without children to understand where you are coming from in delaying extra treatment and being the Dad that you want to be, I so understand this, LIFE is a balancing act when we have young children you know that I applaud your decisions . I know that when you feel the time is right you will be straight back on which ever treatment you need. 

Mo are you suggesting that Jamie is a Si Afolic OH My what has the world come too. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif I can see that he may well need a holiday but AMSTERDAM , it's full of WELL strange people. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 May 2015 at 12:47

Time for an update to keep the threat going.

After four months with no treatment and feeling bloody good Jamie spoils my fun.

Bloods two weeks ago, PSA <0.01 ALP 42 and Testosterone 1.4 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif that's your lot back on Zoly and Denosumab, no matter how much i moaned i was not leaving until i had the injections.

He agreed that i can stay off Abbi and steroids until PSA rises, i now wished i had dug my heals in http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif i mean 1.4 its not as if i was going to arrange an orgy http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Scans early July and bloods in two weeks.

Looking forward to Leicester

Si xx 

PS could someone look at my profile as it appears to have gone, or is it just my computer x  

Edited by member 20 May 2015 at 12:49  | Reason: Not specified

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 May 2015 at 12:55

Bloody 'ell Si,

Jamie is being a real old meanie with you isn't he?

It does seem that those results are excellent, but I'm sure he must have a very good reason for starting HT again so soon.
I mean, you ARE a walking miracle you know! He won't want any spanners in the works.


So looking forward to seeing you an Ness again at The Mill, and yes, your profile won't come up on this site today.
I get a 404 Error message.


All the very best,

George

B2PCa
User
Posted 20 May 2015 at 13:46

I~got the 404 message too Si as indeed I get on any of the long running topics.

If I click on the last one be it yours or Steve's I get the 404 and can only access the topic if I go to the second to last number and come forward. Does that make sense?

We can't control the winds - but we can adjust our sails
User
Posted 20 May 2015 at 13:47
Blimey Si you broke the forum. Your profile is so unique and amazing it is being kept a secret.

I know you are mad with Jamie but he is clearly determined to let you know who is the Oncologist here!! You have an elevated testosterone (admittedly only a teeny bit) and that must have been enough for him to make that judgement.

You might be the first ever advanced mets patient to have intermittent HT. I think Jamie wants to see what happens if you go back on Abiraterone too.

Looking forward to Leicester too.

See you May 31 on my way back North. Xxx

Mo

 
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