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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
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

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 17:46

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 08:30  | Reason: Blood result.

Show Most Thanked Posts
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 ?
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

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

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
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

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

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 09 Feb 2020 at 20:36

I am wondering Chris if another dose of Chemo say six sessions would help 
Good luck 
Barry

User
Posted 10 Feb 2020 at 07:46

Chris J,

I have been informed I have now, waiting to get the actual results tomorrow.

Edited by member 10 Feb 2020 at 07:48  | Reason: Not specified

User
Posted 10 Feb 2020 at 07:47

Barry,

Oncologist ruled it out for now, continue with the Enzalutamide 

User
Posted 26 May 2020 at 11:51

Latest news.
Had constipation for several weeks, emailed my GP for a stool softener, heard nothing so applied online for same, surgery phoned and prescribed another laxative, GP phoned later in the week, had a chat in case one of my METS (22) was causing problems in the Rectum, she wanted to do a DRE but said they had no available appointments so sent me to A&E, WELL had a blood appointment today and Oncology Nurse Practitioner as well, and she stated that the A&E Doctor said the constipation could be caused by the Co codamol and she could feel my PROSTATE which I thought had been removed in Jan 2006!
Well if a little bit is left it CAN grow back, so that’s why my PSA has not gone down and stayed down.
PSA last month was 1.6, I’ll post today’s result when I get it.


Chris.

Edited by member 26 May 2020 at 12:07  | Reason: Not specified

User
Posted 26 May 2020 at 12:19
"Well if a little bit is left it CAN grow back".

That's an interesting concept Chris and one I've never heard of before.

As long as your PSA remains stable or at least a very, very small rise, I personally would be happy with that.

Let's hope the "poo problem" soon becomes history. Perhaps you should ask around to see if there is an RT close by that you can have a go in, all that bouncing up and down should help. :)

Roger
User
Posted 26 May 2020 at 14:00

Originally Posted by: Online Community Member

... she could feel my PROSTATE which I thought had been removed in Jan 2006!
Well if a little bit is left it CAN grow back, so that’s why my PSA has not gone down and stayed down.


Chris.

Do you think that perhaps she didn't word that very well and what she meant was that it a little bit of the tumour is left behind it can grow back? A new prostate can't grow from cells left behind after the surgery. 

 

 

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

User
Posted 26 May 2020 at 14:50

Lyn, she said, at the time, “I can feel your Prostate” and today at the Oncology dept it said that she could feel the Prostate in her report.

and the Oncology Nurse Practitioner said it is possible for the Prostate to grow back, but very unusual.

Edited by member 26 May 2020 at 14:51  | Reason: Not specified

User
Posted 28 May 2020 at 07:28

Keep going Chris , 
Always love reading your posts
Barry

User
Posted 29 May 2020 at 15:57
PSA down a bit more, 1.2 now.

Chris.

User
Posted 29 May 2020 at 18:42

Chris 

Good to see , take care.

Thanks Chris

User
Posted 29 May 2020 at 19:42

Good news Chris .

User
Posted 22 Jun 2020 at 17:46

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 08:30  | Reason: Blood result.

User
Posted 27 Jun 2020 at 09:48

That's splendid news Chris. 

Roger
User
Posted 27 Jun 2020 at 11:56
Great result Chris 👍
User
Posted 27 Jun 2020 at 16:00

Good news Chris. Very pleased for you.

Ido4

User
Posted 27 Jun 2020 at 16:28

Chris 

Great news.

Thanks Chris

 
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