Simon Story Chapter 2

BLOODY FANTASTIC I haven't looked in for a while and as soon as I did I saw your update. WAY TO GO SI SUPERMAN what can I say except BOOM FOR BONFIRE NIGHT when you next visit Jamie give it with both barrels.

I suppose the stats are

FOSTERS 1

TURMERIC 0

This has made my day.

BFN

Julie X

Many thanks for your reply's i really appreciate them.

Paul & Julie, yes the fosters diet is going well http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif Jamie said he had had two patients with similar stats to me and with both of them it spread to the liver so i thought make the liver not very appealing hence the fosters.

Mo you know me to well, but Jamie bringing my appointment forward two weeks has made me rush a bit. The plan back in July was due to the Girls going up to secondary school and school holidays being the time we make memories what ever happens with  the cancer i would not do any hardcore treatment, touch wood nothing happened.

But i am a great believer in playing around with treatments and not letting the cancer get to familiar with them. After looking around the internet for studies on my sort of cancer a friend found one and it made interesting reading.

Records of 3800 men was checked to find men diagnosed with PSA <10 and more than 5 areas of spread, 44 was found, the average response to HT was 7 months, 5 had early chemo 3 responded well but two weeks after finishing the cancer progressed. 30% went to soft tissue and they all died within two years.

So i know Jamie's choice is go back on Abbi, mine is stop HT for six months, my PSA has been undetectable for over two years and i fancy a break and i would like to see what happens.

Another one of Jamie's is 6 cycles of chemo, big No from me i would only do chemo again if my cancer was wide awake and bright eyed and bushy tailed, so that would mean no HT and testosterone patches prior to starting, big big NO from Jamie.

So lets see what happens on Thursday, i am sure we will agree on something http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si xx       

I think the only agreement will be that it's Thursday ;-)

Whatever decisions are made about yiur treatment on Thursday I've decided that I'm going to make sure we have plenty of your medicine in London

Keep at em Si...you keep proving them wrong

Bri

Met Jamie thursday

Bone scan no progression

PET/CT no lymph or soft tissue, stable disease.

SPECT small activity in the pelvis area http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So the plan for after Christmas is,........... not mine http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif the only benefit to stopping treatment and watching my PSA is that i would die a lot quicker but probably a lot happier http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So January the 7th i start Enzalutamide for about 4 months then stopping for a couple of months then back on Abbi, the thought is to keep chopping and changing and confuse the cancer or was that me http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

It was a really good meeting, i got nothing i wanted and he got everything .......................again http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si

Great approach, great you can access both drugs. Hope the enzo causes you no unwanted side effects. Seems a good review to me!

Very very pleased for you Si.

Well done both you and Jamie

Really good news. Everything seems to be going well. Jamie is really looking after you.

Keeping fighting it, you're in really good hands.

Hope the girls are enjoying their new school.

Steve

FABULOUS news on the scans Si, so pleased for you keep rocking it Tommy . Your story is such an inspiration to so many people. Enza and Abbi wow with a few Fosters thrown in. Life in the fast lane good job it's after Xmas or you would be giving Santa a run for his money.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

Hi Si,

as ever you are in control, ish? Hope it all goes well for you all.

How's life? Good or GREAT???

dave

Fosters , zest for life or as I have always suspected just plain old cryptonite. So Superman what ever it is keep on doing whatever it is you are freckling doing.🤗.

May the force be with you. Si Superman sprinkle some magic my way.

BFN

Julie X

Hi Si,

Great news about the test results, long may they continue.

Best of Luck with the HT holiday, I hope it goes well for you.  Will be nice to get some energy back.

Take care.

Steve

Great news. Well done. Superman indeed

Si,

Your story is so inspiring.

I've been here a long time and can't remember seeing anyone have such a turn-around after a diagnosis & prognosis like yours.

Jamie's one of the good guys (like my own onco who was also in San Fran last week) but it takes two to tango doesn't it?

Going back years, even our good guys have had serious doubts about letting us quit treatment for a while, but when we politely 'insist', they generally come round to our way of thinking!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

This situation has changed a lot since my own diagnosis. In those days it was 'YOU MUST STAY ON HT FOR 36 MONTHS'.

I knew I was ready to stop at 24 months (I was so damn tired!). Ian, my onco, reluctantly agreed.

After initial resistance it seems more and more oncologists are happy to give us a break if the circumstances are right - and it certainly looks that way in your case.

I truly believe that frequent 'hormone holidays' do us the world of good. Energy comes back, libido returns, and depression lifts.

Have a great holiday from the HT, but don't forget - check your PSA monthly to avoid any sneaky rises.

By the way, I'm back on HT, and PSA has gone down from 21.9 in August last year to 0.71 last week, after just two (3-monthly) Zoly jabs.

I get my third one in February.

Looking forward to seeing you looking fit, well and happy at The Mill in June this year,

All the very best,

George

its like reading a si wars saga, just read all part 2, I really dont know how you have done this am going to have to have a lie down and a cup of tea to recover

regards
nidge

Kev

I am very much in the doghouse for knocking the treatment on the head, it's quite funny how many people have an opinion

All I can say is live in our shoes for a couple of days 😡

Anyway three weeks of no HT and I have the flu luckily it is not the dangerous variety MAN FLU

But we will manage

So now I sit and wait for some much needed good news from some special people that joined around the time I did

Si xx

Great to take control isn't it, but don't forget what George said about keeping a close eye on the PSA.

All the best

Roy

Superb news Si - but who are you in the dog house with? Surely not Ness?

Simon

Thank you, thank you.
I have had so much fun reading your entire journey ( the heart stuff was scary tho!)
I am at pretty much at the start with widespread bony mets and tumours in the lymph nodes. Couple of weird things though, never found the original tumor and i have no symptoms. have started with ADT and chemo. The journey awaits but I do feel positive.
I am also a beer and football fan..but Fosters, really?? haha this could be the real problem.
Spurs win to win the PL and I will not lie down before that happens, which of course guarantees me a long life :)

Martin

Martin, what do you mean by 'they never found the original tumour'???? It must be in your prostate somewhere, mustn't it?

Good Lord! Weird doesn't really cover it!

Bloods as always are bloody pardon the pun fantastic. Happy Holybobs my friend

BFN

Julie X

BFN

Julie X

sometimes this technology is frustrating

xx

Mo