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Simon Story Chapter 2

User
Posted 12 December 2016 18:22:34(UTC)

Many thanks for your reply's

So latest PSA 0.09 happy with that after 10 weeks of HT, so thats my lot for HT, my guess is i will get another drop in 4 weeks then it will start climbing, so around June i will be around 2 then Jamie can start his magic 

Works Christmas party tomorrow night then sales meeting the following morning should be good

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 12 December 2016 20:19:23(UTC)

Good news indeed, here's hoping it lasts for a while. Enjoy your do's!

User
Posted 12 December 2016 20:44:31(UTC)
Most excellent, keep going mate as you owe me a beer at the Flyer next December !
Life is like a box of chocolates, you never know which one you are gonna get.
I just felt like running
(Forrest Gump)
User
Posted 02 April 2017 08:43:22(UTC)

Morning all from a lovely sunny Newark, my latest update

Still refusing all treatment except Denosumab, things now are starting to move again PSA has gone from 0.22 too 1.6 in five weeks.

So now back to constant pressure to restart treatment and a full week of scan appointments.

Lots to think about, i managed to dump the cardiologist and all the heart meds months ago, they said it was cancer medication induced tachycardia, so if i am not taking cancer meds then i will not get tachycardia and i was right no attacks at all. Three less tablets

So prognosis was 2-3 years and no chance of 4 well i have beat that, i might not follow the normal path treatment wise but it works for me.

So lots to think about over the next few days, decisions, decisions 

Si

 

Don't deny the diagnosis; try to defy the verdict
Thanked 2 times
User
Posted 02 April 2017 12:52:24(UTC)

Hi Si
I'm with you all the way haha. I get your mind-set even if others don't. It's your illness so you have outright say. Big decisions for me too at the end of the month. With a constantly rising psa I'll have to have some treatment or other but not in a rush to mess with my body at all tbh. I feel fine !!
Take care mate
Chris




If life gives you lemons , then make lemonade
User
Posted 02 April 2017 14:39:42(UTC)

Si,

 

I'm with you 100%.

You dare to go where......etc etc.

 

I feel as you do. We know our bodies best, know when a medication is doing us more harm than good, and also know that we're sensible enough not to take stupid risks.

Gut instinct is a great thing.

 

I know it's not for everybody - some cancers are terrifylingly aggressive.

Those really do need extreme caution and the best oncologists around.

 

But if we realise our stubborness is working for us, then we're very lucky guys.

We know we can never be cured, but at least we can keep on top of our cancer for much longer than we were told at diagnosis.

 

If only all PCa was the same. The day will come, hopefully soon, when immunotherapy will be available to all.

That is the only way that our unique cancer cells will be erradicated.

It can't come soon enough. We have lost far too many good men in the time we've been on these forums.

 

So. keep on doing what you're doing, Si.

What you've achieved so far is quite incredible.

 

All the very best,

 

George

Thanked 1 time
User
Posted 03 April 2017 11:53:21(UTC)

I can feel the pressure for you Si. But I spose you will wait for the scan outcomes and consult with Jamie before you make any firm decisions.
Things have worked well so far with your strategy and long may that continue but listen to Jamie's thoughts carefully, he's one of the good ones

Take care

Bri

User
Posted 03 April 2017 16:44:23(UTC)

I admire your approach though I could not be so brave. But I think Bri gets it spot on, certainly keep your input and voice but if the arguments are reasonable listen good and be prepared to change your view. It's your body but it's their knowledge! Good luck as always. Good to see you all last week.

User
Posted 03 April 2017 18:57:13(UTC)

Hhhhmmm - would like to be a fly on the wall at your house right now :-/

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


User
Posted 03 April 2017 18:59:29(UTC)

You expected to reach 2 around June but you are going to get there much earlier than anticipated. I asked you this before but I will ask again - what number is the threshold in your mind?

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


User
Posted 03 April 2017 20:35:35(UTC)

Thanks for your reply's

Lyn not really sure what i will do yet, the rise was much more than expected and my guess is in 4 weeks i will be around the 6 mark and that will be the highest my PSA has been.

So i will listen to Jamie and give it my best consideration, if there is no progression in my scans then it will make my decision a lot harder.

I think a PSA of 2 was always my point of commencing some form of treatment but the question is what treatment

You soon get use to not being on HT

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 04 April 2017 05:51:37(UTC)
Si, you have always been your own man. I was amazed and impressed with your stance on things when I first met you a couple of years ago. I know that I could not have taken the course you steered to date. I am in no way as experienced as many on this site but I realise now that what we think is sometimes clever, diet, exercise, tretment paths may or may not have any effect at all on us although the latter has a good degree of proven science to support. The key to me is how you feel about it, you know me, I run and as such I believe that helps, it may not of course and may even accelerate it, who knows. But and it is a big but, the treatment paths now are quite well established in most cases so I hope that Jamie has your ear more than he has done on other occasions.
Wishing you an eureka moment to make the decision easier for you, take care, Kev
Life is like a box of chocolates, you never know which one you are gonna get.
I just felt like running
(Forrest Gump)
User
Posted 04 April 2017 09:44:03(UTC)

Sorry to be reading this Simon.

No use praying but I will keep everything crossed that whatever you opt for works for you and the family.

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 05 April 2017 00:29:21(UTC)
Well what can I say . Other than you and Trevor are mirror opposites you jump in such small numbers and Trevor jumps in the hundreds but both are still here 4 years on ! Who would have thought it !!
Si you have always taken control and been a master of your own destiny Trevor on the other hand has always played it by the book.
So the Turmeric versus Fosters diet for me doesn't hold water . 😛
You are both a miracle and whatever gene you both have in common should be investigated and most certainly be bottled .
What ever you decide I am behind you 100/% . But just for the record if there is a a blakuim 227 on the table don't go for it apparently it turns your skin brown 😂😂😂😂😂😂
Xxxx
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 April 2017 14:17:40(UTC)
So another PSA test yesterday it is now 3.25 so doubled in 10 days so better than x5 in 4 weeks
Got my scan results yesterday CT all ok no soft tissue involvement
Bone scan not so good. 5 new tumours 2 have grown bigger and 2 have disappeared 😀
So Jamie tonight should be a good chat let's see what he has got in his bag of goodies

Si
Don't deny the diagnosis; try to defy the verdict
Thanked 1 time
User
Posted 13 April 2017 15:08:02(UTC)

I will be thinking about you and waiting for the update x

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


User
Posted 13 April 2017 16:31:48(UTC)

Hi Si

I have followed your progress, your discussions with Jamie and how you are always determined to do your own thing. In your posting on 3 April 2017 you said:

“So I will listen to Jamie and give it my best consideration, if there is no progression in my scans then it will make my decision a lot harder.”

You have accepted that your bone scan is not good Let us all hope that Jamie has some options which you can accept.

Very best regards.

Alan

User
Posted 13 April 2017 16:38:41(UTC)
Thinking of you Si X
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 April 2017 17:07:55(UTC)

We're all thinking about you, Si.

 

Tonight looks like being a very important appointment with Jamie.

 

Here's hoping you can reach a compromise and get some action on those bone tumours.

 

Keeping everything crossed that you'll post an 'upbeat update'.

 

Stay Positive!

 

 

George

User
Posted 13 April 2017 17:26:50(UTC)

Hope the appointment is a positive one and that you can both come to an agreement regarding your further treatment.

Fingers crossed for you

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 13 April 2017 20:08:04(UTC)

Well a nice 45 minute discussion and we have a plan that i will most probably agree to tomorrow.

Start bicalutamide tomorrow, this i will not do, never have.

Zoladex injection next Friday, Yep Just one

Week Monday start 3 cycles of Cabazitaxel

And after that if PSA goes back to undetectable and scans show no progression then i can stop treatment again

Happy with that

Si xx 

Don't deny the diagnosis; try to defy the verdict
Thanked 1 time
User
Posted 13 April 2017 20:17:53(UTC)

<<sigh>>

Love you, Superman Si x

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


User
Posted 13 April 2017 20:46:53(UTC)
Most probably agree tomorrow? Most probably ?
What can I say except this is the song that I dedicate to you it has to be ! I Did it My Way !
I don't always agree with your choices but that's because I am a whimp but my friend I take my hat off to you , you are one heck of a guy . You have owned this cancer from day one and wether your choices are right or wrong is irrelevant. What's important to you is that you are in the driving seat and blooming heck you have never let anyone else take the wheel .
Love you loads.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 April 2017 09:12:57(UTC)

Great to hear there is an agreeable plan in place. Fingers crossed for no progression etc so you can cease treatment again as I know that is what you really want

We will have to catch up for a few beers and maybe a curry

Bri

User
Posted 14 April 2017 11:02:26(UTC)

Wow interesting plan. A different chemo will be interesting to see it's effectiveness. Sounds a good plan, well negotiated. Let's hope you get good results.

User
Posted 14 April 2017 13:54:05(UTC)

Thanks Paul, you have summed up perfectly what I wanted to say.

 

Si, I personally think this is a good plan, and like everyone here, I'm waiting optimistically to see you report increasingly good results.

We all want to have breaks from treatment because they really seem to return us to some 'normality'. Energy back etc.

But we know only too well that eventually, we have to grudgingly accept that we're coming to the end of a break, PSA rises higher (and faster), and it's back on the treatment treadmill for us.

Once back on it, we count the days till we see a chance to once more have that 'holiday'.

I have noticed that my hormone holidays have got shorter each time, but now, even a year or 18 months off treatment is like a lottery win.

 

Wishing you the very best,

 

George

User
Posted 02 May 2017 19:34:06(UTC)
Quick update
Didn't quite do the plan thought I would give the zolodex a miss for now I am sure Jamie will be fine when I see him Thursday
So last Monday I started cabazitaxel with my PSA at 4.6 and my thought was to forget the HT for now so that my cancer was all bright eyed and bushy tailed for when the chemo arrived rather than being subdued with HT
So what can I say about cabazitaxel well quite different side effects from docitaxel but not to bad. No need for all the steroids that I used to take before docitaxel which is great as I don't really like steroids
So bloods tomorrow and will see what the psa is if it is around 5 ish then the ht can wait. At the moment I am hoping to get the psa to below 1 by 4 cycles and that will be me done kids break up for summer and it's fun all the way
Still got a few months worth of Abbi that I might throw in the mix if the psa is a bit stubborn

So far in 41/2 years I managed over 2 years with no treatment and I quite like it so this will be a short sharp hit with all the nice things I still have in my cupboard 🤠🤠
Xx
Don't deny the diagnosis; try to defy the verdict
Thanked 1 time
User
Posted 02 May 2017 22:00:30(UTC)

Keep at it Si. I've got everything crossed for the blood test results. I know how important it is to you to be well enough to have summer fun with your girls.

When you are up to it we need to meet for beer

Bri

User
Posted 02 May 2017 23:19:37(UTC)

Crazy guy, you are going to be in so much s**t on Thursday .... shall I come to counsel Jamie after he has seen you?

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


User
Posted 08 May 2017 13:55:26(UTC)

Quick update for anyone else going on Cabazataxal;

Before starting my PSA was quadrupling every 4 weeks, so my starting PSA was 4.6 but i made the choice not to take HT. i read a really good article once about the take up of chemo between dormant and active tumors, and looking back to when i first had chemo over 4 years ago this was started only one week after commencing HT and i had great results back then.

So after the first week of Chemo my PSA came back as 4.79 so only a small increase, my second cycle is next Monday and if the PSA is still similar then i will leave the HT for another month.

So far there has not been much difference with Docetaxel, 

Si    

Don't deny the diagnosis; try to defy the verdict
Thanked 1 time
User
Posted 08 May 2017 14:59:18(UTC)

Originally Posted by: Online Community Member

So far there has not been much difference with Docetaxel

Are you referring to side effects Si or something else? I suspect I may be looking at Cabazataxal before too long.

User
Posted 08 May 2017 15:15:38(UTC)

Hi David

Yes side effects, i find the taste issue a bit easier this time and not being a great fan of steroids you only have some via the drip no tablets

But it has only been one cycle  

Don't deny the diagnosis; try to defy the verdict
Thanked 1 time
User
Posted 08 May 2017 15:42:43(UTC)

Thanks Si, I hate the steroids too, they have given me fat ankles.  Have you tried ice cubes and frozen pineapple cubes whilst you're having the infusion? It's helped me with taste whilst on docetaxel. I'll ask you again about side effects when you've had some more infusions and/or when I'm about to start Cabazataxal. In the meantime we should continue to use beer to resolve all problems and indeed discover the meaning of life itself. 

User
Posted 08 May 2017 16:04:24(UTC)

My mum always told me that fat ankles are a sign of poor breeding 🤔

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


User
Posted 08 May 2017 16:11:43(UTC)

So you are both joining the cabbage club .... if you haven't already seen this thread, there may be something helpful in it? http://community.prostatecanceruk.org/posts/t7820-Cabbage-Club----------------Cabazitaxel?=#post7820

 

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


User
Posted 08 May 2017 17:18:29(UTC)

Originally Posted by: Online Community Member

So you are both joining the cabbage club .... if you haven't already seen this thread, there may be something helpful in it? http://community.prostatecanceruk.org/posts/t7820-Cabbage-Club----------------Cabazitaxel?=#post7820

Thanks Lyn, I hadn't seen this. You can be sure I will read every word.

User
Posted 08 May 2017 17:22:11(UTC)

Originally Posted by: Online Community Member
My mum always told me that fat ankles are a sign of poor breeding 🤔

Yikes! Surely you are not suggesting that there is some correlation between poor breeding and God's county of Essex? 

User
Posted 08 May 2017 17:38:55(UTC)

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
My mum always told me that fat ankles are a sign of poor breeding 🤔

Yikes! Surely you are not suggesting that there is some correlation between poor breeding and God's county of Essex? 

 

Just don't raise the edge of your dress above your ankles and you'll be fine.  Here in Essex we are very demure !!!!

We can't control the winds - but we can adjust our sails
User
Posted 08 May 2017 22:11:25(UTC)
Sugar how I have I missed this , I wanted to say s*** but I am ever so respectful of Lyns laptop 😂
So here we go at speed reading just to play catch up.
Pineapple
Frozen
Cabbages
Essex dress code ( really not sure how this has anything to do with pca but I will read on )
HT don't tell Jamie
Don't wake Ness
Chelsea 2 Middlesbrough 0 ( sorry I got confused wrong sight)👏
Fat ankles 😂😂😂😂😂 know we are talking ( you have peeked up my Essex dress code ) 🤗 You little monkey 🐒


Love you ! Love you ! Si Superman keep doing it your way .
BFN
Julie X
Ps puppies on the way any day tell the girls x

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 May 2017 22:45:17(UTC)

I heard that in Southend on Sea you can buy Ankle Spanx in natural skin tones or tangerine?

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


Thanked 1 time
User
Posted 09 May 2017 01:59:09(UTC)

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

Thanked 1 time
User
Posted 07 June 2017 07:01:44(UTC)

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 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
Thanked 1 time
User
Posted 07 June 2017 19:41:00(UTC)

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

Bri

Thanked 1 time
User
Posted 09 June 2017 21:50:50(UTC)
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
Thanked 1 time
User
Posted 11 June 2017 20:05:57(UTC)
Hi Si, hope that you get a great break from it and the good progress carries on afterwards. Take care, Kev
Life is like a box of chocolates, you never know which one you are gonna get.
I just felt like running
(Forrest Gump)
User
Posted 11 June 2017 21:54:41(UTC)
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 July 2017 15:48:20(UTC)

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 July 2017 17:18:55(UTC)

Great news Si ness. Enjoy the wedding

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