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Simon Story Chapter 2

User
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
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User
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.

Steve

 

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User
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

Roy

User
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

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
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User
Posted 07 February 2018 17:13:55(UTC)

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

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


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User
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!

AC

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

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

Bri

User
Posted 01 March 2018 20:19:19(UTC)
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 March 2018 20:45:43(UTC)

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 March 2018 21:11:25(UTC)

Best wishes Si.




If life gives you lemons , then make lemonade
User
Posted 01 March 2018 21:13:40(UTC)

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 March 2018 21:21:28(UTC)
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
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User
Posted 01 March 2018 23:22:02(UTC)

Hope it goes well for you Simon.

We’re praying for you Daily.


Chris and Shirley.

User
Posted 01 March 2018 23:35:11(UTC)

Hi Si,

Hope it goes well.

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 01 March 2018 23:43:45(UTC)

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 March 2018 08:40:42(UTC)
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
User
Posted 02 March 2018 09:04:12(UTC)
Wow, amazing, Si, and amazing Jamie.

Wishing you all the best, Janet, x
User
Posted 02 March 2018 11:22:57(UTC)
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 northern lights whilst running in Iceland sept 2017
User
Posted 02 March 2018 16:46:11(UTC)

Si, I talked to my oncologist about the flood and starve approach and he has been in touch with the Yanks to try to get Coventry included in the trial. He wasn't personally involved in one such case at the hospital but a colleague was and it concerned a bloke of 88 who had a remarkable PSA reduction as well as improvements to his bone mets. Just one case! But he will be helpful if I need to join you in this approach.

I'd update my story after my second round of cabazitaxel if only I could find it. Suffice it to say that my "flare" was only one cycle long and I had a very small reduction in PSA in my second cycle. I am therefore hopeful that not only will I now be on a downward PSA path, but also that scans will provide evidence of mets subsiding.

I know you'll keep keep us abreast of your progress with Jamie. If anyone can figure out how the flood and starve approach works, I guess he can!

AC

User
Posted 02 March 2018 18:13:33(UTC)
Thank you so much for your reply’s

Things have moved pretty quick bone scan is booked for Wednesday and CT scan booked for a week Monday then see Jamie on the Thursday to start treatment
I need to ring on Monday with my decision so Jamie can get things ready and for me to sign many bits of paper

I have looked up as much as I possibly can today and it will be the flood and drought the only thing that might throw a spanner in the works is nobody has done this who has had prior chemo

The 20 days of RT to the prostate I cannot find anything useful that would make me do this and the rest all involve chemo and I will not do that till the autumn

So for the first time I will start a new thread the UK version of the BAT trial as I think it might be of use to AC and a few others

Si xx
Don't deny the diagnosis; try to defy the verdict
User
Posted 15 March 2018 22:02:37(UTC)

So met with Jamie tonight to discuss what we do going forward, PSA is now 5, CT scan was clear of soft tissue but bone scan showed two new sites on the ribs and another one on the spine i am buggered how he found room on the spine but fair play to him.

So my thought was after Jamie investigated the Testosterone flood and drought i thought he might decline to do it as all trials done so far excluded patients that had had chemo and i had had two sorts and also my tumor mass is far more than anyone on the trials  but fair play he came up trumps.

So tonight i had Zoladex and 400mg of testosterone, my current testosterone level is at castrate and it is expected over the next 24-48 hours to reach between 1000-1200 then drop back to castrate by day 7, this will then be repeated every 28 days.

The PSA is expected to rise but get a good drop by cycle 2 if not we stop, my testosterone levels will be checked on Monday to see what level i am at.

So pretty exciting, Jamie said this is probably my reputation walking out the door.

Will keep you updated

Si xx    

Don't deny the diagnosis; try to defy the verdict
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User
Posted 15 March 2018 22:22:09(UTC)
You are certainly at the frontier Si. It will be interesting to hear how it goes.
You have an amazing oncologist.
Hope this works for you, Ian.
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User
Posted 16 March 2018 07:33:02(UTC)
Good luck Si

I will be following your progress with interest.

I admire your pioneering spirit and that of your Onco

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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User
Posted 16 March 2018 07:41:57(UTC)

Thank you Dave and Ian for your comments

I will start a new threat for this treatment but i feel great this morning best sleep i have had in a long time.

It might be the most stupidest thing i have done as well

I felt that good i got my wellies on and my thickest jumper and was about to head off to catch up Irun but realized he had finished 

 

Don't deny the diagnosis; try to defy the verdict
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User
Posted 16 March 2018 07:52:57(UTC)

I think it’s great you are feeling in some control , yet not being told you are stupid in your decisions. And your Onco seems to have a god like status. It’s definitely important that people like you also keep them on their toes with treatment updates. It’s so true that you can be treated totally differently wherever you are in the country which seems a bit messy. And some Oncos just put you through treatment plans for the sake of it without listening to the individual. I like yourself have had to drive for a lot of treatment thinking.
Best of wishes and don’t turn into the Hulk :-))




If life gives you lemons , then make lemonade
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User
Posted 16 March 2018 11:08:47(UTC)
Hi si followed your posts with interest, I salute you si your definately a pioneer and up there for putting yourself at the forefront of trialling this as it will benefit and inform so many men..thank you for sharing your journey with us si best of luck. Jo
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User
Posted 16 March 2018 17:29:34(UTC)

Best wishes in the next stage of your journey ,it’s because of selfless men like yourself that hopefully will benefit others .
Will be looking out for your updates
Debby

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User
Posted 16 March 2018 17:52:34(UTC)
What a team that you and your onco make. I really hope this works out well for you and there will be many of us rooting for you. I take my hat off to you.
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User
Posted 16 March 2018 18:17:10(UTC)

Si, go for it. You're blazing a path for me probably and who knows else. I shall watch developments with interest and bitten nails!

AC

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User
Posted 16 March 2018 18:25:50(UTC)

Wow, you must be persuasive for onco to go with it. Obviously hope it works, fingers crossed for you, keep us in touch with progress.

User
Posted 16 March 2018 18:35:37(UTC)

Jamie has a willing participant in you Si, and what a fine pair you make.

All that info gathered from your treatment, at the risk of Jamie's reputation,will inevitably be useful for treating somebody else.

Well done the pair of you. What a fine, brave twosome you make

We can't control the winds - but we can adjust our sails
User
Posted 16 March 2018 18:36:30(UTC)

Poor Ness - her nerves must be shattered

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


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