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Simon Story Chapter 2

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User

Posted 09 Nov 2017 at 08:31

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

User

Posted 09 Nov 2017 at 17:46

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

Posted 09 Nov 2017 at 19:16

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

Posted 09 Nov 2017 at 20:10

Hope after the scans you and the onco can agree a way forward. Best wishes, Ian.

Ido4

User

Posted 09 Nov 2017 at 20:22

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

Posted 10 Nov 2017 at 19:39

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.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 12 Nov 2017 at 20:43

SiSi

I'll see you Wednesday after your scan

I'm convinced you will ace 10 years and some

xxx

User

Posted 12 Nov 2017 at 21:57

What was the almighty row about????

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

User

Posted 12 Nov 2017 at 22:47

Lyn I knew you would ask

I wanted scans after chemo finished and Jamie said no need he thought psa was low and cancer was stable

I throw a wobbly left ness to continue the conversation and scan where booked

I had the bone scan on Friday and there is progression in my pelvis everywhere else has remained the same

So for me cabi didn’t work so that is now off the list and with psa riseing I guess I am now hormone resistant

Simon story chapter three is fast approaching

Don't deny the diagnosis; try to defy the verdict

User

Posted 12 Nov 2017 at 23:09

I’m so sorry for you Simon, let’s hope Jamie has something to pull out of the hat.

Chris.

User

Posted 12 Nov 2017 at 23:10

I didn't want to let you down by not asking :-/

Do you think abbi round 2 might be a possibility? Or Radium 223? Or even sticking with zoladex a little while longer but adding bicalutimide just to see if you can get a bit of a dip?

PS It's Ness I feel most sorry for - you must be hell to live with xxx

Edited by member 12 Nov 2017 at 23:18 | Reason: Not specified

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

User

Posted 13 Nov 2017 at 16:10

Lyn you have me so wrong i am an angel to live with.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

So Abbi a second time is a possibility, Radium not sure about just yet, it doesn't excite me.

Adding another HT also possible, just had my latest Testosterone and i am <0.3

Now the one i fancy is the trial going in with the testosterone "floods and droughts" reading the trial data the testosterone being used is readily available, have to chat with Jamie, i see another argument coming about self administrating http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

But the one i think he might let me do is Docetaxel until my PSA gets to undetectable (if it does) then swap to Abbi.

First I need to wait for my CT scans Wednesday then its all systems go again, obviously with Christmas approaching treatment can wait till the new year.

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 13 Nov 2017 at 19:38

Phew....sounds like there are stil options then Si.
Looks like we shall have to raise a few glasses in London to keep things at bay until after Christmas

See you soon

Bri

User

Posted 17 Nov 2017 at 10:08

So yesterday i received the full bone scan report and my wish for staying off treatment till after Christmas is now becoming more difficult

There is focal increase activity in the right 2nd rib anteriorly, right 11th rib posteriorly, left 7th rib posteriorly, thoracolumbar spine at 4 points, superior posterior left lieum, anterior left lieum, upper sacrum, left pubic bone and right inferior acetabulum.

The posterior iliac and sacral foci are more intense than April 17 and the foci in the right acetabulum and one in the lower lumbar spine appear new. The right 7th rib site is not clearly evident today and the right 11th rib site is less intense. Other sites are unchanged

Decisions Decisions

Don't deny the diagnosis; try to defy the verdict

User

Posted 17 Nov 2017 at 16:35

And did you see Jamie as well or just received the results and discussion is still to be had?

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

User

Posted 17 Nov 2017 at 16:47

Hi Lyn

Just had the scan reports emailed through, CT scans all clear of soft tissue involvement so some good news.

See Jamie on the 30th

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 17 Nov 2017 at 17:06

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

Posted 17 Nov 2017 at 18:02

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

Posted 17 Nov 2017 at 21:10

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

User

Posted 08 Dec 2017 at 19:05

So I met with Jamie last week and made our peace

PSA still rising and with the spread we agreed that I needed to restart treatment my last 5 pSA blow

17/10/17 PSA 0.77

24/10/17 PSA 1.0

8/11/17 PSA 1.63

20/11/17 PSA 2.4

7/12/17 PSA 4.44

So my choice was to go with the large dose of testosterone the trial data looked good but he would have none of it

He considered running docataxel again but as I had only finished cabitaxel 11 weeks ago and had 4 chest infections he would leave that till the new year

So the choice was Abbi or enzo and as it is Christmas and I had had Abbi before with no side effects that was my choice

So started today bloods again in two weeks

Don't deny the diagnosis; try to defy the verdict

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