Simon Story Chapter 2

User

Posted 29 Dec 2014 at 12:06

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

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

User

Posted 29 Dec 2014 at 12:26

Hi there Si Superman

well the decision to defer your zoladex for about a month so that you could have a great Xmas with Ness and the Girls made a lot of sense. I am hoping that you will have this reinstated in January regardless of next steps along with the Denusomab. I think Jamie is aiming to get any new pelvic mets with RT so that they do not grow rapidly as things must have done first time around. Makes a lot of good arguement to go for chemo if radium 223 is still not available as I know you are both keen to use this along with Enzalutamide. Also I know you have strong views about letting the cancer get active and then hitting the hell out of it with everything including the kitchen sink so if these mets are active then go for it. Your Onco seems to have got a really good vision of your particular cancer and how it is behaving. Thinking back to June 2013 when I first had any nvolvement on this forum you have done so very well among the group of Men in the incureable/advanced with mets group. Reallly does give encouragement to others getting onto the forum now. Medical treatment of advanced Pca is moving so quickly and Jamie is up there on the "cutting edge"

see you next weekend when we must rganise the next Newark bash meantime have a fantastic new Year and thanks for beng there for me right through 2014.

xxx

Mandy mo

User

Posted 29 Dec 2014 at 13:42

Congratulations Simon on getting through two years on the roller-coaster (as Allister always calls it) and coming out the other end still doing so well.

In Jamie, I think you have the perfect doctor in your corner. As Mo says, he seems to have a really good insight into your particular cancer and its behaviour.

Good luck on your forthcoming treatment and we hope to see many more uplifting posts from you and Ness.

All the very best,

George and Lynn

B2PCa

User

Posted 29 Dec 2014 at 14:36

Great stuff, Si. So glad to hear your onco sounds really on top of all this, and fingers crossed for an effective treatment plan in the New Year !

Best Wishes, Fiona.

User

Posted 29 Dec 2014 at 15:41

Hope you and the family had a great Christmas Si. Look forward to seeing you at the next gathering.

Dave

User

Posted 29 Dec 2014 at 16:01

Well done for sticking to your guns Si...you were adamant that there was not going to be any change in treatment before chrimbo. I'm sure you, Ness and the girls had a great one..

I have to admit I lose track of what treatment options are available or what is best. Having seen what Jamie has done for you so far I'm sure you will be guided by him on your next leg of treatment and as you say you are still in a much better place than when diagnosed

Happy new year to you, Ness and the girls

Bri x

User

Posted 29 Dec 2014 at 21:11

I'm pleased you has a good Christmas Si and Ness and delighted that Jamie is such a smart operator and is working in your specific best interests.

I asked Mandy how you were getting on and am glad to see you are your usual positive self, and are kicking the backside out of those new mets.

happy New Year

Lots of love

Allison and John xxx

User

Posted 29 Dec 2014 at 21:44

Hi Si, I have only known u for a month or so online plus the kings x beer but am always so impressed with your ability to fight and your self belief in what to do. You are an inspiration, hope all goes well for you now. Have a great New Year, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 30 Dec 2014 at 00:14

Just catching up with your news. Sounds like the plan is a good one and once again Jamie is showing much innovation in your treatment path. Hope to see progress in the next few weeks. Be great to catch up with you and Ness. I missed the Newark pre christmas meet when it was cancelled! Keep going mate!

User

Posted 06 Jan 2015 at 17:15

So bloods today all good, PSA <0.01 Testosterone <0.01 ALP 41

So i will nicely refuse the Zoladex again when i meet Jamie Thursday and also the planned radiotherapy and wait for the next bone scan to draw up the next plan .

Feeling good at the moment so everything can wait http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

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

User

Posted 06 Jan 2015 at 17:58

Good results Simon, hope mine are as good in Feb.

Chris.

User

Posted 06 Jan 2015 at 19:34

That's brilliant news Si. So what were the UFOs on your previous scan, any theories???

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

User

Posted 06 Jan 2015 at 19:40

Hi Lyn,

They was two new little mets in the Pelvis, but they promised to be good if i didn't zap them

Si xx

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

User

Posted 06 Jan 2015 at 20:14

Looking good Si and I have to say that you looked great on Saturday.

Assuming you will keep up the abbi while you ponder the best way forward with Jamie.

I have nearly finished baking ready for Thursday.

Xxx

User

Posted 06 Jan 2015 at 20:33

Good news Simon. Pleased for you.

Dave

User

Posted 06 Jan 2015 at 21:21

Fantastic news Si all you need now is for Cambridge to beat Man U and it will be a great start to the year for you!

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 06 Jan 2015 at 22:29

Brilliant blood results Si, we get ours on Fri. I still can't fathom how you have the new mets with such near perfect results. The film My Left Foot sprung to mind when you said there was something in your foot. Looking forward to seeing you and Mandy on Thur and the goodies of course.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 Jan 2015 at 22:50

Great result Si

I will have a pint of whatever you're drinking

All the best

Roy

User

Posted 08 Jan 2015 at 21:29

Met Jamie tonight, and well you win some you lose some.

Zoladex argument i didn't win.

RT i did win

Denosumab changed from six monthly to monthly.

Bone scan in two weeks then we can discuss.

Radium is now available in Nottingham again, so lots of options again.

Lovely day today with Mo, Julie and Trevor and loads of dogs.

Si xx

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

User

Posted 08 Jan 2015 at 21:45

Are you still taking Abby tabs?

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