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Chris J's Journey

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User
Posted 21 Jan 2021 at 11:19

All the best Chris , another hand to hold 👍.
Phil

User
Posted 21 Jan 2021 at 15:15

You've done really well to hold out.  Also to be on annual psa tests without treatment.  There's a lot of goodwill on here, let's hope for the best.  Peter

User
Posted 04 Feb 2021 at 08:49
So 11 days into Bicalutamide and my first monthly injection of Decapeptyl tomorrow Friday gulp.

Has anyone ever had , or seen research on Bicalutamide flaring up knee pain ?? This is where my QOL thing comes in again. I’ve had Osteoarthritis in both knees for years , strangely all starting since my surgery 5 1/2 yrs ago , but all has been relatively ok for the last year with good painkillers and exercise etc. But 11 days into Bical and my knees are back to crippling me again. I also have what must be flare in my left ribs and insomnia.

I spoke to hospice yesterday and they weren’t aware of joint pain but it’s clearly labelled. Almost like my tendons have been attacked :-((

User
Posted 04 Feb 2021 at 10:00
Hi Chris, I’ve just taken a very quick look and noted that possible side effects of Bicalutamide can include joint pain of the knee although it is one of the rarer side effects.

God luck for tomorrow mate

Bri

User
Posted 04 Feb 2021 at 20:24

Sorry things have flared up Chris. Good luck with the Decapeptyl injection tomorrow. 

Ido4

User
Posted 12 Feb 2021 at 16:19

Quite a ‘ pleasant ‘ surprise today. Had psa tested on Tuesday and it hasn’t been tested since last April when it was 440. Was expecting it to be in the thousands. However the result was 990 which will be my official starting psa now I’m on HT.
Bearing in mind I had three large doses of palliative RT in September and 2 weeks of Bicalutamide before this test.
Anyway seems positive I feel. Only had Decapeptyl in my body for exactly one week but not a single side-effect at all at the moment but I’m holding my breath on that one. Onwards and upwards heh x

Edited by member 12 Feb 2021 at 22:36  | Reason: Not specified

User
Posted 12 Feb 2021 at 16:27
That's excellent news, Chris. Hope the HT is effective for you.

Best wishes,

Chris

User
Posted 12 Feb 2021 at 16:32
Very promising news Chris. Hope the HT can control the disease for a long time.

All the best, Wicher

User
Posted 12 Feb 2021 at 16:34

Fingers crossed Chris.

Best wishes and good luck. 

User
Posted 12 Feb 2021 at 17:25
Wow! Fingers crossed for you, CJ x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Feb 2021 at 17:31
Great news Chris and hope the side effects stay the same too 👍

Cheers

Bill

User
Posted 12 Feb 2021 at 18:44

CJ 

Take care of yourself, you know we are rooting for you.

Thanks Chris

 

User
Posted 12 Feb 2021 at 18:52

Great news

User
Posted 12 Feb 2021 at 21:33

Great to see your news

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 12 Feb 2021 at 22:51

Great news Chris, as you say onwards and upwards...

Good luck going forwards 🤞

Angex 

User
Posted 13 Feb 2021 at 17:48

Fingers crossed for you Chris. 

Ido4

User
Posted 13 Feb 2021 at 20:49
Best wishes Chris hopefully side effects stay minimal.

Debby x

User
Posted 13 Feb 2021 at 21:37

Here's to a good long response.   Peter

User
Posted 14 Feb 2021 at 10:08
Great news mate
User
Posted 14 Feb 2021 at 11:06

Sending best wishes to you Chris 

User
Posted 14 Feb 2021 at 12:33

Great news Chris,

Arthur

User
Posted 14 Feb 2021 at 12:44

Good news ! 

User
Posted 14 Feb 2021 at 14:03

Good news Chris,

All the best 

Stay safe

Rich

 

User
Posted 16 Feb 2021 at 10:28
Are you a candidate for early Enzo Chris?

Lots of evidence of great results for hormone sensitive use Inc this trial

https://www.practiceupdate.com/C/113129/56?elsca1=emc_enews_topic-alert

User
Posted 16 Feb 2021 at 11:27

That’s good news Chris. Will keep my fingers crossed you don’t get side effects , not everyone does.

Phil

User
Posted 19 Feb 2021 at 12:45

Great news Chris, fingers crossed for you.

Roy

User
Posted 07 Mar 2021 at 09:14
Chris,

the very best of luck with this next round of treatment, I hope the therapy benefits can enhance you QOL.

I have only started with this ( expleative of your choice )’ing thing, and your desire to not let it win is inspiring.

Buzzy

User
Posted 07 Mar 2021 at 11:29
Thanks all for your replies. I had second HT jab on Friday and also Covid jab!

Not loads to report as quite early in treatment but I should be castrated now technically. Only noticeable things are hot sweats ( not flushes ) at night and morning in bed , but none through the day , and a marked but not total reduction in libido , however erectile function is still as before. I just can’t be bothered is all 😆

I shall continue with the pump whatever. I won’t get any results until mid April. Not expecting miracles with psa of 990 but here is hoping. Cheers

User
Posted 07 Mar 2021 at 15:10

Here’s hoping the PSA number is being hammered down by the HT Chris.

Ido4

User
Posted 07 Mar 2021 at 17:28
Hopefully the PSA will be coming down nicely Chris 🤞
User
Posted 07 Mar 2021 at 22:37

Good luck Chris, we hope your PSA will be signicantly lower come mid-April 🤞

Ange x

User
Posted 08 Mar 2021 at 09:58

Good luck Chris. Hoping you’ll see a big reduction in your PSA soon .

Phil

User
Posted 08 Mar 2021 at 14:48
Good luck Chris, hopefully significant drop with your PSA.

Richard

User
Posted 23 Apr 2021 at 13:35
Three months of Decapeptyl injections !

PSA gone from 990 to 14 hurrah

Side effects all the obvious but acceptable. But QOL is reduced I guess.

Offered Enzalutamide front-loaded but only have a week to decide , or I can keep it in the bag. Not really sure what to do.

Stay safe all and thanks for help and support upfront x

User
Posted 23 Apr 2021 at 13:48

Fantastic news Chris, Keep it up (no pun intended)

all the best

Roy

User
Posted 23 Apr 2021 at 16:18

That’s brilliant news Chris, so pleased for you.  I’m sure you’ll hear from others with knowledge regarding the Enzalutamide.  

All the best going forward.

Angex 

User
Posted 23 Apr 2021 at 16:47
Really good news that the HT is working so well, Chris.

Best wishes,

Chris

User
Posted 23 Apr 2021 at 17:57
Fab reduction in PSA Chris.

Mrs MAS

User
Posted 23 Apr 2021 at 21:08

CJ 

Good to hear about the reduction in the PSA. 

Thanks Chris

User
Posted 23 Apr 2021 at 21:28

I started Enz..... today about 4 weeks after Zoladex injection. First major "treatment" to be followed by 6 factions of RT in about November. My thinking is that the longer I am around the better the chances of new treatments  being introduced. 

User
Posted 24 Apr 2021 at 06:54
Good news Chris hoping it continues

Cheers

Bill

User
Posted 24 Apr 2021 at 07:19

Wow Chris what a result!  Great news.

Arthur

 

User
Posted 24 Apr 2021 at 11:03

Hey! Good result, so pleased for you & your family.

User
Posted 24 Apr 2021 at 22:53
Great news about the PSA Chris
User
Posted 25 Apr 2021 at 06:47
Take the Enza too, lots of great evidence it's is beneficial "up front"
User
Posted 25 Apr 2021 at 15:26

That's great.

A heck of a rate 990 to 14 in 3 months.  A quick calc says it's halved 7 times which is about every couple of weeks if it's constant halving.

All the best, Peter

User
Posted 25 Apr 2021 at 16:27

That’s a fantastic PSA response Chris, so pleased for you. How are you feeling in general? 

Ido4

User
Posted 25 Apr 2021 at 16:49
Thanks everyone for replies. You wouldn’t know there was a thing wrong with me except my legs and walking which is apparently my knee osteoarthritis. Since spine and rib RT in November things have greatly improved and I’m back to work. Breathing better and back MUCH better.

I’m really chuffed but obviously sad in the same way because of the side effects. Very achy joints. Hot flushes are no big deal ( to me ) , plenty of libido left over and EF is brilliant. Sadly I have inorgasmia which seems quite cruel , but not shying away from love and intimacy. Gonna have a big call with PCUK tomorrow about Enza as I have to decide this week. My gut feeling is to save it for later. Most of the data is that it extends life if used upfront but not by very much. Three year survival is 80:72 % with or without , but the side-effects and coronary issues and chronic fatigue and memory stuff don’t appeal to me at all. And I was promised I could have it down the line which works quite well also. So time to take a gamble again methinks because I feel good and alive and HT is hopefully going to buy me some years in this present acceptable state. Thanks again all

Six years since surgery in June !

User
Posted 25 Apr 2021 at 22:58
Great that you are back at work. I think in your shoes I would hold the enza back for later as well.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Apr 2021 at 10:59

Great news Chris, so pleased for you 👍.

I can see the reasoning behind delaying the Enza till later. I think it’s what I would do too.

Got my next PSA next Friday , hoping it’s not gone any higher than the 2.75 it was last time. 

Phil

 
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