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Simon Story Chapter 2

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User
Posted 09 May 2017 at 02:59

Going to have to teach you to speak proper Essex. It's not Southend (best BBC accent) my dear, it's Sarfend!

User
Posted 07 Jun 2017 at 08:01

Thought it was time to update my Cabazitaxel Journey, so far three cycles and if my memory serves me well it has been slightly better than Docetaxel, my sleep is much better and the odd taste is much improved.

24/4 Chemo #1 PSA 4.79 ALP 79

15/5 Chemo #2 PSA 4.89 ALP 78 not what i was hoping for, might need to introduce HT after all, will wait till next cycle

5/6 Chemo #3 PSA 1.22 ALP 70 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif that's Better.

So we are going for a slight intermittent Chemo i will have cycle 4 as normal then stop for the school holidays and have my last two cycles starting the end of August.

Best wishes to all

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 Jun 2017 at 20:41

Great to see the drop Si....you will have a great summer with your girls

Bri

User
Posted 09 Jun 2017 at 22:50
Si Superman I have no idea if a take a break chemo is a good idea but as always I am one hundred percent behind you .

Scores on the doors are Supercalafragalisticexpialadosous.

Any time you and the girls want to visit just let me know the draw bridge will be open 😉 Puppies are here.

BFN

Julie XX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Jun 2017 at 21:05
Hi Si, hope that you get a great break from it and the good progress carries on afterwards. Take care, 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 11 Jun 2017 at 22:54
You are stuck in the loop Si , it's a bit like the Bermuda Triangle but without a map 😜

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Jul 2017 at 16:48

So Cabazitaxel #4 Today delayed for one week so that i could attend a wedding.

PSA 0.92 down from 1.22 ALP 61 so all good still not adding HT into the mix.

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 03 Jul 2017 at 18:18

Great news Si ness. Enjoy the wedding

We can't control the winds - but we can adjust our sails
User
Posted 26 Aug 2017 at 09:21

Thought i would do a quick update for anyone that is following my treatment, i had my 4th Cabazitaxel  on the 3rd July with my PSA down to 0.93 and then decided to stop for the school holidays, sneaked in a PSA early August and PSA is now 0.64 so #5 on Tuesday and then see Jamie on Thursday to discuss where we go next.

During the break i managed to squeeze in a Ablation and my Tachycardia is now a thing of the past http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif but my one and only night in a Hospital was hell not really sure how anyone is meant to sleep so at 6 am it was time to leave i had had enough http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So this is the first time that i have not got a plan in my head for going forward, over the last 5 years i have managed to avoid treatment for 2 of them.

I do not think i will get to undetectable with two more Chemo, and i do not fancy restarting HT so i might restart Abbi just until the PSA gets to undetectable or i might just stop all treatment again not sure time to start researching again.

But i am sure Jamie will have a plan to discuss 

Si 

 

  

Don't deny the diagnosis; try to defy the verdict
User
Posted 26 Aug 2017 at 10:59

I admire your free spirit Si. I get where you are at lol. And you have obviously a great Onco and relationship with him. I see my new Onco properly on Wednesday and I'm hoping it's just psa and left off treatment !! My only worry is endless aches and pains in both my legs and hips, but in honesty it could be because I'm working again as a Healthcare Assistant and its bloomin hard graft. Keep strong brother 👍

User
Posted 26 Aug 2017 at 11:52

Hope the rest of the treatment goes well and that you have a good debate with Jamie before final decisions. You say no HT but then say Abbi, isn't that a form of HT. would they switch you to enzalutimide, working well for me? Await with interest your next steps! Good luck as always

Edited by member 26 Aug 2017 at 11:52  | Reason: Not specified

User
Posted 28 Aug 2017 at 21:09
So you knowI have I been holding back from posting ( I have been trying to research a plan ) and the fact is I have come up with diddly squat and , didly squat being an old army saying means if you have no idea what to do next then go back to plan A.

Plan A being obviously steak and Fosters it's served you well in the past and it's tried and tested 😉

Si my lovely friend you are the plan , you are the controller of your destiny and a true SuperMan . ❤️

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Sep 2017 at 09:49

Thought i would update after my Cabazataxel journey, was hoping to stop all treatment till after Christmas but results do not look that good.

Cycle 1 & 2 PSA rise, cycle 3 & 4 PSA drop and cycle 5 & 6 PSA rise.

My last cycle was on Monday so this coming Monday i will have another PSA test and then decisions need to be made, this must be the first time that i do not have a clear plan in my head.

I met with Jamie after cycle 5 and he was hoping the PSA rise was just a blip, so decisions decisions, after nearly 5 years of sharing my body with Mr Cancer and managing over 2 years of no treatment at all, I will meet Jamie again in a couple of weeks to discuss, he is going to wait to listen to my take on it as he said i have had the most unorthodox approach to treatment of any patient he has had, but some how it has worked for me.

Si xx 

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 Sep 2017 at 10:45

So not sure what you might do next. Sounds as if you need something? Abby again, enzalutimide or..____be interested to hear what is resolved with J. How are you feeling? And what are the scans like? They will be as important as the PSA.

My turn next week, feeling good on the enzo

User
Posted 24 Sep 2017 at 16:34
Hi Si,

Is going back on Abbi an option ?

Trevor has tolerated it really well and it's been over 2 years now .

I am sure that by the time you see Jamie one of you will have a plan.

Always thinking of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Sep 2017 at 16:42

Good luck Si with whichever path you choose to take

We can't control the winds - but we can adjust our sails
User
Posted 24 Sep 2017 at 20:24

Si
Sounds a bit tipsy turfy.
I'm still on the enzo after 3 years and it's still working for me.
I don't know if it's an option for you but it's certainly better for me than the abbi.
I hope it all doesn't spoil your Christmas with the children.
All the best
Paul

User
Posted 24 Sep 2017 at 22:24
Si

I don't understand all these different medications, but I am sure you and Jamie know what you are doing. Take care of yourself and your family.

Thanks Chris

User
Posted 24 Sep 2017 at 22:34

I'm pretty confident when you and Jamie get your heads together you will come up with something be it orthodox or unorthodox

How do you feel in yourself Si

Bri

User
Posted 09 Nov 2017 at 08:24

Thought it was time for another update, I finished Cabazitaxel about 6 weeks ago, all in all I found this a much more tolerable chemo compared with Docetaxel but I am not sure that the good results I had with Docetaxel will be replicated with Cabazitaxel.

Since finishing 6 weeks ago my PSA has gone from 0.77 to 1.0 and yesterday to 1.63 so I guess my wish of remaining off treatment till after Christmas might be a tad difficult. The problem I have now is that in the past I have always had a clear plan in my head of how I wanted to play my hand and Jamie (my Onco) as a rule, as long as he doesn’t get struck off has gone along with, as he puts it “the most unorthodox approach to treatment of any patient he has ever had” but now my head is empty,

I am not sure it has helped that we had an all mighty argument last time we met http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif but I am sure we will get over it, so it is bone scan tomorrow and CT scan next Wednesday and then we will see what we will do next,

Si xx

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