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Simon Story Chapter 2

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User

Posted 12 Dec 2016 at 18:22

Many thanks for your reply's

So latest PSA 0.09 happy with that after 10 weeks of HT, so thats my lot for HT, my guess is i will get another drop in 4 weeks then it will start climbing, so around June i will be around 2 then Jamie can start his magic http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Works Christmas party tomorrow night then sales meeting the following morning http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif should be good

Si xx

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

User

Posted 12 Dec 2016 at 20:19

Good news indeed, here's hoping it lasts for a while. Enjoy your do's!

User

Posted 12 Dec 2016 at 20:44

Most excellent, keep going mate as you owe me a beer at the Flyer next December !

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 02 Apr 2017 at 09:43

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

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

User

Posted 02 Apr 2017 at 13:52

Hi Si
I'm with you all the way haha. I get your mind-set even if others don't. It's your illness so you have outright say. Big decisions for me too at the end of the month. With a constantly rising psa I'll have to have some treatment or other but not in a rush to mess with my body at all tbh. I feel fine !!
Take care mate
Chris

User

Posted 02 Apr 2017 at 15:39

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

B2PCa

User

Posted 03 Apr 2017 at 12:53

I can feel the pressure for you Si. But I spose you will wait for the scan outcomes and consult with Jamie before you make any firm decisions.
Things have worked well so far with your strategy and long may that continue but listen to Jamie's thoughts carefully, he's one of the good ones

Take care

Bri

User

Posted 03 Apr 2017 at 17:44

I admire your approach though I could not be so brave. But I think Bri gets it spot on, certainly keep your input and voice but if the arguments are reasonable listen good and be prepared to change your view. It's your body but it's their knowledge! Good luck as always. Good to see you all last week.

Edited by member 03 Apr 2017 at 17:44 | Reason: Not specified

User

Posted 03 Apr 2017 at 19:57

Hhhhmmm - would like to be a fly on the wall at your house right now :-/

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

User

Posted 03 Apr 2017 at 19:59

You expected to reach 2 around June but you are going to get there much earlier than anticipated. I asked you this before but I will ask again - what number is the threshold in your mind?

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

User

Posted 03 Apr 2017 at 21:35

Thanks for your reply's

Lyn not really sure what i will do yet, the rise was much more than expected and my guess is in 4 weeks i will be around the 6 mark and that will be the highest my PSA has been.

So i will listen to Jamie and give it my best consideration, if there is no progression in my scans then it will make my decision a lot harder.

I think a PSA of 2 was always my point of commencing some form of treatment but the question is what treatment

You soon get use to not being on HT http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

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

User

Posted 04 Apr 2017 at 06:51

Si, you have always been your own man. I was amazed and impressed with your stance on things when I first met you a couple of years ago. I know that I could not have taken the course you steered to date. I am in no way as experienced as many on this site but I realise now that what we think is sometimes clever, diet, exercise, tretment paths may or may not have any effect at all on us although the latter has a good degree of proven science to support. The key to me is how you feel about it, you know me, I run and as such I believe that helps, it may not of course and may even accelerate it, who knows. But and it is a big but, the treatment paths now are quite well established in most cases so I hope that Jamie has your ear more than he has done on other occasions.

Wishing you an eureka moment to make the decision easier for you, take care, 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 04 Apr 2017 at 10:44

Sorry to be reading this Simon.

No use praying but I will keep everything crossed that whatever you opt for works for you and the family.

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

Posted 05 Apr 2017 at 01:29

Well what can I say . Other than you and Trevor are mirror opposites you jump in such small numbers and Trevor jumps in the hundreds but both are still here 4 years on ! Who would have thought it !!

Si you have always taken control and been a master of your own destiny Trevor on the other hand has always played it by the book.

So the Turmeric versus Fosters diet for me doesn't hold water . 😛

You are both a miracle and whatever gene you both have in common should be investigated and most certainly be bottled .

What ever you decide I am behind you 100/% . But just for the record if there is a a blakuim 227 on the table don't go for it apparently it turns your skin brown 😂😂😂😂😂😂

Xxxx

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Apr 2017 at 15:17

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

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

User

Posted 13 Apr 2017 at 16:08

I will be thinking about you and waiting for the update x

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

User

Posted 13 Apr 2017 at 17:31

Hi Si

I have followed your progress, your discussions with Jamie and how you are always determined to do your own thing. In your posting on 3 April 2017 you said:

“So I will listen to Jamie and give it my best consideration, if there is no progression in my scans then it will make my decision a lot harder.”

You have accepted that your bone scan is not good Let us all hope that Jamie has some options which you can accept.

Very best regards.

Alan

User

Posted 13 Apr 2017 at 17:38

Thinking of you Si X

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Apr 2017 at 18:07

We're all thinking about you, Si.

Tonight looks like being a very important appointment with Jamie.

Here's hoping you can reach a compromise and get some action on those bone tumours.

Keeping everything crossed that you'll post an 'upbeat update'.

Stay Positive!

George

B2PCa

User

Posted 13 Apr 2017 at 18:26

Hope the appointment is a positive one and that you can both come to an agreement regarding your further treatment.

Fingers crossed for you

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails

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