Simon Story Chapter 2

User

Posted 02 Mar 2018 at 16:46

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!

User

Posted 02 Mar 2018 at 18:13

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 Mar 2018 at 22:02

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

User

Posted 15 Mar 2018 at 22:22

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.

Ido4

User

Posted 16 Mar 2018 at 07:33

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"

User

Posted 16 Mar 2018 at 07:41

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 https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

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

User

Posted 16 Mar 2018 at 07:52

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 :-))

User

Posted 16 Mar 2018 at 11:08

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

User

Posted 16 Mar 2018 at 17:29

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

User

Posted 16 Mar 2018 at 17:52

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.

User

Posted 16 Mar 2018 at 18:17

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!

User

Posted 16 Mar 2018 at 18:25

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 Mar 2018 at 18:35

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

Edited by member 16 Mar 2018 at 18:36 | Reason: Not specified

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

User

Posted 16 Mar 2018 at 18:36

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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