Simon Story Chapter 2

Great news Si, your progress remains awe inspiring. Not sure about the long term plan it has a logic to it but is it clinical sound? I am no expert but we have chatted about this before. I suppose my preference is to stay with what is working but I admire your guts and the fact you can access enzo gets over some of the problems others have experienced, so why not go for it now. It's good and glad to see you posting here again with some good news!

Edited by member 23 Sep 2014 at 19:17  | Reason: Not specified

Great news!  Keep up the fight!

Si, whatever you do, you are blazing a trail for those who will tread this path after. And having seen the photos of you on FB finishing the triathlon this weekend for charity, you are looking mighty great my friend. Congratulations xxx

But the photos look good and who wouldn't be impressed at the idea of our very own Si holding hands with the Brownlees?

Hi Paul, just spotted your question "why not go for it now ?"

The main reason being Christmas approaching and everything i do is based around my three lovely girls. not knowing how these two drugs will react together means i will not risk ruining Christmas.

i have already had approval from BUPA for both of the drugs together, so full steam ahead for January.

If it all goes horribly wrong i think Jamie will be at the Mill again this year so you can ask him why http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

Also working on him to come on the forum once a month for an hour for a Q&A not sure how it would work but once he agrees then i will ask PCAUK if we can do it

See you soon mate

Si

Great idea SI re Q&A. That's what the group chat should be about! Let,s use the technology!

About 6 weeks ago we put a posting on Facebook of my scans that are on this thread encouraging people to have a PSA test.

Well last night Vanessa received a message from a medical secretary for the oncologists at a specialist cancer hospital in oxford asking if they could use these for awareness, no problem said i but below is part of her email;

"I have found those scans fascinating! I work at the Churchill hospital in Oxford which is a specialist cancer and haematology hospital. I'm a medical secretary working with a team of oncologists in Breast cancer and often see progression of the disease spread into the bones but have never seen scan images like this!"

No sh*t Sherlock, really made me feel great http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

WOW Si, so you are going to be famous and just for getting your kit off.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif You need to get those bones insured.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

Good afternoon Si! Just checking in to see how you're doing and as usual delighted to hear your amazingness is continuing! So pleased things are going well, those are fab results. You and Jamie are certainly a winning team. Great that you can have both treatments too. Wishing you, Ness and the girls a wonderful Xmas. xxx

The bloods are telling a good story and that's somethign we are all grateful for. Think of you and Neas often and hope this is what Lyn suggests .....lol

Any chance of talking to Jamie beforehand?

Lots of love

Allison

Dave I think plans are being put together for a meet either just before Christmas or very soon after it will let you know, Paul is gadding about somehwere lush (working in New Zealand) until mid December I think.

xx

Mo

Hi All,

Bloods today ALP 35 (lowest ever) PSA <0.01 Testosterone <0.01

CT PET scan Monday to try and identify the UFO that the bone scan picked up two weeks ago, it is being reported on straight away then i will see Jamie (onco)

Ness thinks it is a malteser i had and it missed my stomach and is just floating around, we shall see monday

Si    

if your ALP goes much lower I will start to question if you are actually a human life form? as for the malteser I am worried that I may have been responsible as I do tend to bring maltesers with me when I visit?

Hope all goes really well on Monday ideally the malteser has melted and if not I just pray it is something of little or no significance. I will be very interested to hear what Jamie has to say if it does turn out to be a new minimet, especially with blood results like that, how can that happen?

lots of hugs I will be thinking of you all day Monday (well more than usual anyway)

Love to Ness and the Girls

xxx

Mandy Mo

Thank you Si and your staunch Lady; you have given detailed factual hope, I read the lot and I am in total awe.
I cried a bit, but also laughed, again, thank you.

I recall reading somewhere that the sooner you get to a centre of excellence, the better your chances, so to Irun I note that I started at Epsom after the GP, referred to Royal Marsden (Sutton) and never looked back. Went straight onto 'Stampede' and the current genetic survey - I figured I may as well be some use whatever happens.

For Super-Si I was interested (and appalled) at your first bone scans, but on the funny side the adverts that appeared on the screen underneath offered them for purchase, as mounted holiday postcards and Christmas cards! That's taking black humour just a tad far! 8~)

Can't thank you enough for such a positive story, well told.

Kindest regards to all on here, specially the families, b0b

I am struggling to get wifi at the moment in NZ so thought I must post before it goes again. This is great news and you continue your amazing path of resistance. Long may it continue.

My dad had problems with his left ear for many years, convinced that a piece of bacon had lodged there. When he was eventually operated there was no bacon sadly though sausage, eggs and chips instead! Hope the Malteser is nothing mate as you have the Newark Group christmas bash to organise with Mo.

PS I lied about the eggs and chips!

Edited by member 15 Nov 2014 at 21:45  | Reason: Not specified

Well it's fairly simple really, some of us mere mortals are made of flesh and blood and then there are the higher beings with Superman powers that are made of Kryptonite. What other explanation could there be.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Thinking of you Ness and the girls for tomorrow. X

BFN

Julie X

As it was two years ago that we had the worst Christmas imaginable, going through all of the diagnosis I thought it was time for an update.

I had a bone scan about seven weeks ago that highlighted two new areas of concern one it each pelvis. As all of my bloods and stats where all perfect my onco found it hard to believe so we continued on Abbi. CT scan showed still no soft tissue or lymph node involvement so a full body MRI was booked.
This confirmed what the bone scan showed two new mets in the pelvis and also the possibility of one in my left foot. Had my bloods done again and all  results are still good.

So as Christmas was approaching my cancer and I decided to call of all hostilities for the Christmas period so treatment stopped no Zoladex http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif while I discussed Jamie’s plan with the wife.

Bloods early January then five shots of radiotherapy to the pelvis area then at the end of Jan a new bone scan. If the scan is still a bit iffy the plan then was Radium 223 but supply of this drug for new patients in Nottinghamshire is still not available so that leaves us with another trip down the Chemo route but with a one and half hour in an oxygen chamber after each infusion.
So all in all not bad I am still in a much better situation than i was two years ago.
Ness and I are still having lots of discussions as to what way I will precede; gut feeling is to wait for Radium and Enzalutamide together.
Si x