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Simon Story Chapter 2

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User
Posted 06 Feb 2018 at 20:57
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

User
Posted 07 Feb 2018 at 02:24

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

 

User
Posted 07 Feb 2018 at 11:25
Hi Si

Be careful with all that extra testosterone, you will be living up to your Superman image lol. It's a pity our Oncos aren't able to push the envelope, but I suppose the NHS restrains them. I don't blame you not wanting to have Chemo at this stage and looking for an alternative path, which I will follow with interest.

All the best

Roy

User
Posted 07 Feb 2018 at 12:12
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
Posted 07 Feb 2018 at 17:13

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
Posted 14 Feb 2018 at 17:46
I sent professor D the guy running the BAT trial an email with a potted history of my journey and a copy of my scans and he very kindly sent me a reply

In both phase one and two trial nobody had had prior treatment with chemo but He doesn’t think that would be an issue he past on lots of useful information so now I need to convince Jamie

I was also told that low secreting psa metastatic prostant cancer is quite rare and need treating quite differently and to make sure I have a “crackerjack oncologist “

Fingers crossed

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 14 Feb 2018 at 18:29

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

User
Posted 15 Feb 2018 at 17:18

Keep at it, Si. We are in the same boat as my PSA has been low for years but the mets have developed. I envy you a crackerjack oncologist. Mine has limited experience and does it "by the book" - so far at any rate! I did have a great oncologist but he retired early, good for his own health, not so good for mine!

AC

User
Posted 15 Feb 2018 at 21:30

Fingers crossed for a positive outcome from the consultation Si. See you Sat

Bri

User
Posted 01 Mar 2018 at 20:19
Just back from seeing Jamie and I really do have a crackerjack oncologist

So Abbi has been stopped today after another big rise in psa

My choices are

RT to the prostate

Tumour biopsy and hopefully start panopanib

Or the testosterone flood and drought

I need to ring in tomorrow with my decision and scans are booked for next week

I know my choice looking forward to this

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 01 Mar 2018 at 20:45

Wow - RT offer has come out of the blue! Why was the new biopsy suggested only in relation to pazopanib?

And exactly how high was the latest rise?

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

User
Posted 01 Mar 2018 at 21:11

Best wishes Si.

If life gives you lemons , then make lemonade

User
Posted 01 Mar 2018 at 21:13

Good luck and all best wishes for whatever your choice is Si

We can't control the winds - but we can adjust our sails
User
Posted 01 Mar 2018 at 21:21
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
Posted 01 Mar 2018 at 23:22

Hope it goes well for you Simon.

We’re praying for you Daily.


Chris and Shirley.

User
Posted 01 Mar 2018 at 23:35

Hi Si,

Hope it goes well.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 01 Mar 2018 at 23:43

I read that to mean that Jamie is happy to liaise with the Americans on this? If so, he truly is a star - I am not sure you would still be here without him, but there again he will probably be happy to say that he has learned an enormous amount from you.

Best of luck xxx

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

User
Posted 02 Mar 2018 at 08:40
I hope it goes well for you. How the flood and drought of testosterone works will be of interest to many.

Your oncologist is amazing as are you!

Ian

Ido4

User
Posted 02 Mar 2018 at 09:04
Wow, amazing, Si, and amazing Jamie.

Wishing you all the best, Janet, x

User
Posted 02 Mar 2018 at 11:22
Always thinking of you Si, the things you do will be used by many in years to come I am sure.

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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