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Simon Story Chapter 2

Posted 06 February 2018 20:57:34(UTC)
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
Thanked 2 times
Posted 07 February 2018 02:24:37(UTC)

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.



Thanked 3 times
Posted 07 February 2018 11:25:05(UTC)
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


Posted 07 February 2018 12:12:28(UTC)
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

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
Thanked 1 time
Posted 07 February 2018 17:13:55(UTC)

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!


Thanked 1 time
Posted 14 February 2018 17:46:39(UTC)
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
Don't deny the diagnosis; try to defy the verdict
Posted 14 February 2018 18:29:38(UTC)

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

Thanked 1 time
Posted 15 February 2018 17:18:21(UTC)

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!


Posted 15 February 2018 21:30:43(UTC)

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


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