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Simon Story Chapter 2

User
Posted 26 August 2017 10:52:19(UTC)

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

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User
Posted 28 August 2017 20:09:27(UTC)
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
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User
Posted 23 September 2017 08:49:49(UTC)

Thought i would update after my Cabazataxel journey, was hoping to stop all treatment till after Christmas but results do not look that good.

Cycle 1 & 2 PSA rise, cycle 3 & 4 PSA drop and cycle 5 & 6 PSA rise.

My last cycle was on Monday so this coming Monday i will have another PSA test and then decisions need to be made, this must be the first time that i do not have a clear plan in my head.

I met with Jamie after cycle 5 and he was hoping the PSA rise was just a blip, so decisions decisions, after nearly 5 years of sharing my body with Mr Cancer and managing over 2 years of no treatment at all, I will meet Jamie again in a couple of weeks to discuss, he is going to wait to listen to my take on it as he said i have had the most unorthodox approach to treatment of any patient he has had, but some how it has worked for me.

Si xx 

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 September 2017 09:45:26(UTC)

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

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User
Posted 24 September 2017 15:34:50(UTC)
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
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User
Posted 24 September 2017 15:42:03(UTC)

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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User
Posted 24 September 2017 19:24:32(UTC)

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

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User
Posted 24 September 2017 21:24:04(UTC)
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
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User
Posted 24 September 2017 21:34:14(UTC)

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

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User
Posted 09 November 2017 08:24:59(UTC)

Thought it was time for another update, I finished Cabazitaxel about 6 weeks ago, all in all I found this a much more tolerable chemo compared with Docetaxel but I am not sure that the good results I had with Docetaxel will be replicated with Cabazitaxel.

Since finishing 6 weeks ago my PSA has gone from 0.77 to 1.0 and yesterday to 1.63 so I guess my wish of remaining off treatment till after Christmas might be a tad difficult. The problem I have now is that in the past I have always had a clear plan in my head of how I wanted to play my hand and Jamie (my Onco) as a rule, as long as he doesn’t get struck off has gone along with, as he puts it “the most unorthodox approach to treatment of any patient he has ever had” but now my head is empty,

I am not sure it has helped that we had an all mighty argument last time we met  but I am sure we will get over it, so it is bone scan tomorrow and CT scan next Wednesday and then we will see what we will do next,

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 09 November 2017 08:31:58(UTC)

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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User
Posted 09 November 2017 17:46:52(UTC)
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 northern lights whilst running in Iceland sept 2017
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User
Posted 09 November 2017 19:16:11(UTC)

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




If life gives you lemons , then make lemonade
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User
Posted 09 November 2017 20:10:47(UTC)

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

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User
Posted 09 November 2017 20:22:09(UTC)

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.

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User
Posted 10 November 2017 19:39:50(UTC)
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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User
Posted 12 November 2017 20:43:34(UTC)
SiSi
I'll see you Wednesday after your scan
I'm convinced you will ace 10 years and some
xxx
User
Posted 12 November 2017 21:57:09(UTC)

What was the almighty row about????

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


User
Posted 12 November 2017 22:47:47(UTC)
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 November 2017 23:09:03(UTC)

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

Chris.

User
Posted 12 November 2017 23:10:45(UTC)

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

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


User
Posted 13 November 2017 16:10:14(UTC)

Lyn you have me so wrong i am an angel to live with.

 

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 

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 November 2017 19:38:19(UTC)

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 November 2017 10:08:59(UTC)

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 November 2017 16:35:49(UTC)

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 November 2017 16:47:16(UTC)

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 November 2017 17:06:11(UTC)
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 northern lights whilst running in Iceland sept 2017
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User
Posted 17 November 2017 18:02:25(UTC)
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
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User
Posted 17 November 2017 21:10:38(UTC)
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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User
Posted 08 December 2017 19:05:58(UTC)
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
Si
Don't deny the diagnosis; try to defy the verdict
User
Posted 08 December 2017 19:27:18(UTC)

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




If life gives you lemons , then make lemonade
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User
Posted 08 December 2017 20:47:19(UTC)
Good luck with the Abbi Si.
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User
Posted 08 December 2017 21:49:43(UTC)
Si

Hope all goes well with the treatment and not too many side effects.

Thanks Chris

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User
Posted 08 December 2017 23:33:48(UTC)

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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User
Posted 09 December 2017 04:41:27(UTC)
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 northern lights whilst running in Iceland sept 2017
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User
Posted 09 December 2017 09:41:20(UTC)

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

We can't control the winds - but we can adjust our sails
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User
Posted 10 December 2017 10:35:57(UTC)
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
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User
Posted 10 December 2017 10:58:47(UTC)
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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