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User
Posted 03 Jan 2019 at 15:24

Well, ive just come back from seeing my Oncologist, and my PSA is up again, 2.1 in October and 3.9 now, see him again in July and back, once again, on HT, but its nearly 13 years since surgery so looking upwards and forwards, just booked a cruise for May 2020!

 

Edited by member 03 Jan 2019 at 16:00  | Reason: Not specified

User
Posted 03 Jan 2019 at 15:24

Well, ive just come back from seeing my Oncologist, and my PSA is up again, 2.1 in October and 3.9 now, see him again in July and back, once again, on HT, but its nearly 13 years since surgery so looking upwards and forwards, just booked a cruise for May 2020!

 

Edited by member 03 Jan 2019 at 16:00  | Reason: Not specified

User
Posted 03 Jan 2019 at 15:43

Hi Chris

Sorry to read your news about the rise in PSA but hopefully the return to HT later on will knock it back again.

Are you going on holiday in a Tardis as I see you  have booked for 2010 - enjoy. 

Kind regards

Kevan 

User
Posted 03 Jan 2019 at 21:19
Chris J, no I don’t have bone mets, just a slight spread from the Prostate 13 years ago and what’s left enables the little sods to carry on circulating around my body. Just being controlled by I HT, this is the quickest rise during a pause period.

Chris.

User
Posted 03 Jan 2019 at 22:17
I think it’s great that you’ve tackled it head on , and here you are many many years later. All your treatments have held it at bay. I’m so terribly scared I’m only 51 and don’t really want any of these treatments at all. My psa is 82 now and G9 with lymph spread even post surgery. I recovered totally from surgery and don’t want any more treatment except for pain. If they said 5 yrs with treatment and 3 yrs with none , I think I’d take the 3 yrs. My mind and mood and bipolar can’t seem to cope any more. Just my young son who is 8 to stand by in reality. I have zero desire to be chemically castrated and watch my wife go out each weekend whilst I watch Masterchef and wonder where she is. I know my personality won’t cope at all. And I think chemo is a no go for me ever. Filling my body with toxins. Not my style unless red wine. Too young to die I guess but I approach my Onco each time with “leave me ‘ , rather than ‘ help me ‘. I’ve nursed men tiill their death with PCA and it’s not what id want yet I guess pain rules the world. Wiith regards to treatment ive been living life to the max and endless fun but ever rising psa means gloom sometime I guess and I’m ready for it. I know I won’t tolerate HT , my. mind wouldlt cope with It I’m sure at 51. Maybe at 75 when I’m done with fun a little more

If life gives you lemons , then make lemonade

User
Posted 14 Jan 2020 at 11:43

Hi Chris,

It's very wrong that you haven't yet had the promised bone scan.

When we've fought so hard for so many years to beat back the cancer, now more than ever we need to see the full picture of any mets growth so that treatment can be properly focused.

But I'm glad that you're getting enzalutamide (and steroids, I believe?) plus Zoladex

In my local support group, we have a lot of men who had really advanced mets but who are now thriving on that combination of meds.

Each of them is over 70 and have kept the beast at bay for over 5 yrs since they commenced the treatment,

Hoping you're given the bone scan very soon, and wishing you a good road ahead.

You're one helluva fighter and have always put a younger guy like me to shame with your energy and zest for life.

Stay strong and keep that positive attitude that's seen you through so many years of the battle.

All the best,

 

George

B2PCa
User
Posted 14 Jan 2020 at 16:06
NEWS.

Back from Oncology Clinic with Enzalutamide.

And got home to find two letters with Scan dates, 5th Feb, CT then later in the day Nuclear All Body Bone Scan.

Chris.

User
Posted 14 Jan 2020 at 17:42
Good luck Chris. It’s nice when they fit both scans in on the same day ! I’ve got my second full CT and Bone next week in a period of 3 months. I’ll be glowing.

They even had the sense to leave the cannula in between depts to save further strife lol. Keep on fighting

If life gives you lemons , then make lemonade

User
Posted 07 Feb 2020 at 16:46
Hi Exbus, glad the Enzalutamide is doing the trick, Tony's Oncologist wanted him to have that so he could stop the steroids after he had finished his chemo last year but because of his other conditions he couldn't have it so he is on abiraterone and you have to take steroids with that.

regards Barbara

User
Posted 07 Feb 2020 at 17:13
Barbara, I’m cutting down to half a steroid pill a day, rather than just taking 4 weeks, as it’s best not to stop abruptly Onco said.

Chris.

User
Posted 07 Feb 2020 at 18:43
Good to see your PSA in decline Chris and hope the trend continues.
Roger
User
Posted 10 Feb 2020 at 07:47

Barry,

Oncologist ruled it out for now, continue with the Enzalutamide 

User
Posted 22 Jun 2020 at 16:46

Just had my four weekly telephone appointment with Oncologist, when I queried the “feeling Prostate” Onco said it is more likely SCAR TISSUE.
So carrying on with Enzalutamide and Zoladex, we will think about another set of SCANS when PSA rises, he said, ( note not IF but when)


Chris.

PS, latest Blood result now down by a third to 0.8 I’m pleased with that.

Edited by member 27 Jun 2020 at 07:30  | Reason: Blood result.

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User
Posted 03 Jan 2019 at 15:43

Hi Chris

Sorry to read your news about the rise in PSA but hopefully the return to HT later on will knock it back again.

Are you going on holiday in a Tardis as I see you  have booked for 2010 - enjoy. 

Kind regards

Kevan 

User
Posted 03 Jan 2019 at 16:12

I hope the HT knocks it back.

 

Ido4

User
Posted 03 Jan 2019 at 17:20
Are you actually M1. ?? Can’t see from your profile. Do you have bone spread ?

If life gives you lemons , then make lemonade

User
Posted 03 Jan 2019 at 18:32

Chris

All the best with the treatment, you have certainly had an eventful journey.

Thanks Chris

User
Posted 03 Jan 2019 at 19:00
Hi Chris,

Good luck with treatment.

Enjoy the cruise.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 03 Jan 2019 at 19:30
HI Chris

Hope HT knocks that PSA back and you enjoy the cruise and many more of them.

Ray

User
Posted 03 Jan 2019 at 21:19
Chris J, no I don’t have bone mets, just a slight spread from the Prostate 13 years ago and what’s left enables the little sods to carry on circulating around my body. Just being controlled by I HT, this is the quickest rise during a pause period.

Chris.

User
Posted 03 Jan 2019 at 22:17
I think it’s great that you’ve tackled it head on , and here you are many many years later. All your treatments have held it at bay. I’m so terribly scared I’m only 51 and don’t really want any of these treatments at all. My psa is 82 now and G9 with lymph spread even post surgery. I recovered totally from surgery and don’t want any more treatment except for pain. If they said 5 yrs with treatment and 3 yrs with none , I think I’d take the 3 yrs. My mind and mood and bipolar can’t seem to cope any more. Just my young son who is 8 to stand by in reality. I have zero desire to be chemically castrated and watch my wife go out each weekend whilst I watch Masterchef and wonder where she is. I know my personality won’t cope at all. And I think chemo is a no go for me ever. Filling my body with toxins. Not my style unless red wine. Too young to die I guess but I approach my Onco each time with “leave me ‘ , rather than ‘ help me ‘. I’ve nursed men tiill their death with PCA and it’s not what id want yet I guess pain rules the world. Wiith regards to treatment ive been living life to the max and endless fun but ever rising psa means gloom sometime I guess and I’m ready for it. I know I won’t tolerate HT , my. mind wouldlt cope with It I’m sure at 51. Maybe at 75 when I’m done with fun a little more

If life gives you lemons , then make lemonade

User
Posted 13 Jan 2020 at 08:13

Latest news, I saw Onco in July, started on 12 weekly Zolidex and 3 weeks of Bicalutamide , I was offered a bone scan, had a letter from him after Christmas, as I’ve been writing to him about scan which said it had Metastasis, how he knows when I haven’t had a scan I don’t know!

Saw him again last week and he’s going to start me on Enzalutamide hopefully tomorrow.

Bloods this year, 3.9 as mentioned before, 8.8 in March, 17.9 in June, 21.4 in September and 80.8 now.

Chris.

Still waiting for Bone Scan, he said he has asked again!

Edited by member 13 Jan 2020 at 08:34  | Reason: Not specified

User
Posted 14 Jan 2020 at 11:43

Hi Chris,

It's very wrong that you haven't yet had the promised bone scan.

When we've fought so hard for so many years to beat back the cancer, now more than ever we need to see the full picture of any mets growth so that treatment can be properly focused.

But I'm glad that you're getting enzalutamide (and steroids, I believe?) plus Zoladex

In my local support group, we have a lot of men who had really advanced mets but who are now thriving on that combination of meds.

Each of them is over 70 and have kept the beast at bay for over 5 yrs since they commenced the treatment,

Hoping you're given the bone scan very soon, and wishing you a good road ahead.

You're one helluva fighter and have always put a younger guy like me to shame with your energy and zest for life.

Stay strong and keep that positive attitude that's seen you through so many years of the battle.

All the best,

 

George

B2PCa
User
Posted 14 Jan 2020 at 16:06
NEWS.

Back from Oncology Clinic with Enzalutamide.

And got home to find two letters with Scan dates, 5th Feb, CT then later in the day Nuclear All Body Bone Scan.

Chris.

User
Posted 14 Jan 2020 at 17:42
Good luck Chris. It’s nice when they fit both scans in on the same day ! I’ve got my second full CT and Bone next week in a period of 3 months. I’ll be glowing.

They even had the sense to leave the cannula in between depts to save further strife lol. Keep on fighting

If life gives you lemons , then make lemonade

User
Posted 14 Jan 2020 at 18:22
Good luck from me too Chris.

Barry
User
Posted 14 Jan 2020 at 20:18

Good luck Chris.

User
Posted 14 Jan 2020 at 20:41

Chris

Hope all goes well . 

Thanks Chris and Dawn

User
Posted 17 Jan 2020 at 15:35
Good luck Chris

Barry

User
Posted 17 Jan 2020 at 19:08

Good luck Chris,

Arthur

User
Posted 17 Jan 2020 at 21:54

Good luck Chris.  I hope the treatment works well for you and that the scans go well. 

User
Posted 07 Feb 2020 at 16:13
Latest, PSA gone down to 12 after 3 weeks of Enzalutamide.

PCa has spread to Bones, don’t know which or where, and a few insignificant cysts on Liver.

Carry on with Enzalutamide, Zolidex and every other day of Dexamethasone

 
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