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User
Posted 21 Jul 2018 at 22:13

Tony has just had his latest results and his PSA has gone up from 0.7 in in april  to 8.7 . onco was going to start him on rt if his psa had stabilized but has now ruled that out and he is having casodex  as well as the zoladex he is already on, he thinks this will work for 6 to 12 months and will then look at other options, these could be limited due to him having stage 5 kidney disease.

User
Posted 11 Jan 2019 at 17:20

Hi Barb

Great news!

I have been following your postings since I was diagnosed, encouraged by the way Tony has lived life to the full despite his treatments

At the time I thought I would not be around for long not having any experience of how this cancer rolls out. That was 10 years ago. So, as an encouragement to those newly diagnosed please don’t let your fears work on your imagination

One day at a time and enjoy the ’now’

Follow Tony’s example and try to live life as normally as possible. We don’t know what the future holds

Kind regards

Ray

Edited by member 11 Jan 2019 at 18:25  | Reason: Spelling mistake

User
Posted 22 Jul 2018 at 10:00
Barbara

Sorry to read of the increase. Going on past experiences 6 - 12 months is about the expected time but of course each is different so fingers crossed it works far longer.

Good luck to you both

Ray

User
Posted 04 Oct 2018 at 07:41
Is there no chance he can have the lymph node irradiated? Would one of the newer "accurate" RT methods help avoid kidney damage? What about abiraterone?
User
Posted 04 Oct 2018 at 07:46
I think the issue was the impact that RT to the affected lymph nodes might have on his kidneys in relation to lymphodema, not collateral damage from the radiation waves.

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

User
Posted 21 Oct 2018 at 18:55

 Barbara Tony the best of luck to you both.

Ray

User
Posted 21 Oct 2018 at 19:57
Fingers crossed for you Barbara x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Nov 2018 at 06:06

THanks Lyn

it was Tonys 74th birthday at the weekend and we went to Potters at hopton for a break with familly and Tony is off to golf tomorow so have made the most of this bit of time before next chemo. Seems amazing that Tony was only 61 when he started this journey sept 2005 with a visit to the doctors. xx

 

 

 

 

Edited by member 12 Nov 2018 at 06:12  | Reason: to add something

User
Posted 17 Dec 2018 at 17:21
Barbara, I have never had my wife in with me in chemo sessions. She knows how long and boring they are and has better things to do, but many of my fellow patients at the Arden Cancer Centre at Coventry do have their partners sitting beside them and are welcomed. I think it is outrageous that you should not be allowed to be with your husband. Do make a fuss about it!

AC

User
Posted 17 Dec 2018 at 21:56

Hi Barbara

i havent been on for ages, just due to PCA fatigue really, John has finished his ten chemos now and i’m shocked that you arent able to be with him during the infusion, whether its boring or not. i attended most with John, to make sure he didn't say anything daft! His memory is shot now with the years of no testosterone. He is very fatigued, but saw his oncologist every three weeks prior to each chemo to make sure he was well enough to receive the chemo. it was notable that his blood volume decreased during the chemo and along with anaemia no wonder he was/is tired. It might be worth checking similar with Tony.

 

love Devonmaid xxx

User
Posted 17 Dec 2018 at 23:37

I've had 4 Chemo sessions out of 6 scheduled at Blackpool Victoria Hospital. We all go in a big room, about 15 of us. My wife came to the first infusion but after that i told her I would go it alone so for the last 3 and the next 2 infusions I'm happy to just be there on my own.

I recognise everyone is different and i feel a bit "Billy No Mates" as the only one on my own in the Chemo suite without a buddy but its bad enough going through this s**t without putting the person you love through it as well.

 

John

User
Posted 28 Dec 2018 at 19:25
Tony went for his 4th chemo today, when he came out he had a grab bag that some lovely person had made up for all the chemo patients over Christmas with a lovely message of support and filled with all sorts of goodies, there was a beany hat,socks,lotion,lip balm,biscuits,sweets and lots of other bits. what a lovely caring person they must be. xxx

barbara

User
Posted 09 Jan 2019 at 20:46
Brilliant Barbara, that’s a good start to the new year :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jan 2019 at 12:01

Thats great news indeed! 

User
Posted 10 Jan 2019 at 20:40

Thats a fantastic response. Great news.

Ido4

User
Posted 27 Feb 2019 at 10:32
Tony has just seen onco, psa down again to 2.7 and lympth nodes have shrunk a bit so good news, is going to have the full 10 chemo sessions and after that maybe RT to the lymph nodes if his kidneys are ok, for some reason his kidney function has gone up from 9 to 11, so hopefully they will remain stable like that for a while.

barbara.

User
Posted 27 Feb 2019 at 10:39
Great news. You two are real fighters and an inspiration to us all!
User
Posted 27 Feb 2019 at 20:20
Well done. Hope the improvement continues.

Keep up the fight.

Ray

User
Posted 27 Feb 2019 at 21:27

Hope things stay stable Barbara , you continue to inspire us new guys. 

Chris.

User
Posted 12 Apr 2019 at 08:56
Hi

Tony is off for chemo no 9 today and is still keeping quite well, lots of tiredeness and a dodgy stomach for a few days after chemo, tends to spend a lot of time sleeping no 10 and the final one on may 3rd and then see onco the following week to see how it has all gone and next steps, hopefully get a holiday in before next lot of treatment.

regards barbara

User
Posted 13 Apr 2019 at 16:32

That’s great Barbara, John did all 10 and even though his PSA was clearly creeping up from 6 plus we don’t regret any of it. 

Fingers crossed for a great result and a fab holiday.

Love Devonmaid xxxx 

User
Posted 13 Apr 2019 at 18:11
Fingers crossed for you, Barbara
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 May 2019 at 08:31
Tony was fine all through no 9, couple of little niggles in the first couple of days but that was all, he had no 10 yesterday will see the Onco next Wednesday and then see hopefully what next steps will be, hope to get a holiday in before any more treatment starts.

barbara xx

User
Posted 04 May 2019 at 20:40

A

ways think of you both Barbara, hope you get your holiday, you so deserve it xxxx

love Devonmaid 

User
Posted 04 May 2019 at 22:20
Thanks Devonmaid

hope John is feeling a bit better hopefully get back on treatment xxxx

love barbara x

User
Posted 17 May 2019 at 21:23
Just received letter from oncologist confirming it will be abiraterone will be more suitable for him so hopefully that will work. x
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User
Posted 22 Jul 2018 at 10:00
Barbara

Sorry to read of the increase. Going on past experiences 6 - 12 months is about the expected time but of course each is different so fingers crossed it works far longer.

Good luck to you both

Ray

User
Posted 03 Oct 2018 at 22:12

sTony saw his oncologist today, unfortunately the casodex has not worked and psa up to 19.5 next step dosetaxel to start after we come back from holiday towards the end of the month. hopefully this will work for a while, still on zoladex for npw.

barbara

Edited by member 11 Nov 2018 at 22:13  | Reason: spelling mistake

User
Posted 04 Oct 2018 at 07:41
Is there no chance he can have the lymph node irradiated? Would one of the newer "accurate" RT methods help avoid kidney damage? What about abiraterone?
User
Posted 04 Oct 2018 at 07:46
I think the issue was the impact that RT to the affected lymph nodes might have on his kidneys in relation to lymphodema, not collateral damage from the radiation waves.

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

User
Posted 04 Oct 2018 at 10:25
The lymph node involvement is right near the kidney and Tony is ckd 5 kidneys only working at 10% so it is a double edged sword, his oncologist was going to attempt the RT if his psa had remained stable earlier in the year but it just kept going up. They will keep there eyes on his kidneys once on the chemo and if it is causing a problem with them they will stop it. Tony's oncologist and renal specialist keep each other informed as to what is going on, his oncologist is trying not to damage the kidney so as to keep him off dialysis as long as possible.

barbara

User
Posted 21 Oct 2018 at 17:30
chemo starting on wednesday
User
Posted 21 Oct 2018 at 18:55

 Barbara Tony the best of luck to you both.

Ray

User
Posted 21 Oct 2018 at 19:57
Fingers crossed for you Barbara x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Oct 2018 at 13:02
first chemo treatment yesterday and so far all good. xx

User
Posted 11 Nov 2018 at 22:16

Tony got through his first chemo with not many side affects,  next one on Thursday hopefully he will tolerate that one as well as he has this one. xx  

Edited by member 11 Nov 2018 at 22:17  | Reason: Not specified

User
Posted 12 Nov 2018 at 01:06
Good luck - I hope you have something nice to do in the first part of the week?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Nov 2018 at 06:06

THanks Lyn

it was Tonys 74th birthday at the weekend and we went to Potters at hopton for a break with familly and Tony is off to golf tomorow so have made the most of this bit of time before next chemo. Seems amazing that Tony was only 61 when he started this journey sept 2005 with a visit to the doctors. xx

 

 

 

 

Edited by member 12 Nov 2018 at 06:12  | Reason: to add something

User
Posted 17 Dec 2018 at 09:27
Hello

Tony has now had 3 lots of chemo out of a possible 10, first 2 he didn't seem that bad, no real side effects apart from tiredness and a bit of soreness in the groin area, since the 3rd infusion he seems to be getting more and more fatigued.

I am used to going in with Tony for his appts but am not allowed in with him while he is having his chemo and he has not seen his oncologist since he started this, he does not listen to what they say to him in the unit so I have no idea if he is telling them how he is feeling etc, his stock answer is i'm ok.

I do not no if it is the chemo or his kidneys causing the extreme tiredness as he is aenemic due to the kidneys or if he is depressed (think it could be that) He is seeing his renal specialist next monday so may get some answers then.

Merry christmas and happy new year

regards barbara

User
Posted 17 Dec 2018 at 17:21
Barbara, I have never had my wife in with me in chemo sessions. She knows how long and boring they are and has better things to do, but many of my fellow patients at the Arden Cancer Centre at Coventry do have their partners sitting beside them and are welcomed. I think it is outrageous that you should not be allowed to be with your husband. Do make a fuss about it!

AC

User
Posted 17 Dec 2018 at 21:26
AC

unfortunately there is just no room, it is only a small unit at the hospital and now he is having them at a mobile unit that is just round the corner from where I live, there is only room for the patients and staff, I would not want to stay in there with him its just it would be good to actually no what he is telling them about how he is etc.

Today he went for blood tests for his Kidneys and about ten minutes ago got a phone call from 111 doctor about his creatine telling me he must see his doctor tomorrow because it was so high (it was 454) told her he had CKD5 and he was seeing his renal dr on monday

and that it had been higher than that before but she said we should phone hospital tomorrow, not sure if I will .

barbara

User
Posted 17 Dec 2018 at 21:56

Hi Barbara

i havent been on for ages, just due to PCA fatigue really, John has finished his ten chemos now and i’m shocked that you arent able to be with him during the infusion, whether its boring or not. i attended most with John, to make sure he didn't say anything daft! His memory is shot now with the years of no testosterone. He is very fatigued, but saw his oncologist every three weeks prior to each chemo to make sure he was well enough to receive the chemo. it was notable that his blood volume decreased during the chemo and along with anaemia no wonder he was/is tired. It might be worth checking similar with Tony.

 

love Devonmaid xxx

User
Posted 17 Dec 2018 at 22:07
Hi Devonmaid

Tony has not seen his oncologist since his chemo started, my sister used to be able to go in with her husband when he was having chemo for asbestosis so I thought I would be able to but unfortunately not. I think the years of no testosterone probably has made hid memory quite bad, when the doctor phoned tonight she asked me if he was on dialysis and Tony said to me that's what I am on isn't it, I said no your on chemo. lol. so yes he does get quite confused.,

The last time he saw his renal consultant he put Tony on extra iron tablets but he did say if that did not work he would either put him on a course of injections or a blood infusion so will wit to see what he says on Monday,

regards Barbara xxx

User
Posted 17 Dec 2018 at 23:37

I've had 4 Chemo sessions out of 6 scheduled at Blackpool Victoria Hospital. We all go in a big room, about 15 of us. My wife came to the first infusion but after that i told her I would go it alone so for the last 3 and the next 2 infusions I'm happy to just be there on my own.

I recognise everyone is different and i feel a bit "Billy No Mates" as the only one on my own in the Chemo suite without a buddy but its bad enough going through this s**t without putting the person you love through it as well.

 

John

User
Posted 28 Dec 2018 at 19:25
Tony went for his 4th chemo today, when he came out he had a grab bag that some lovely person had made up for all the chemo patients over Christmas with a lovely message of support and filled with all sorts of goodies, there was a beany hat,socks,lotion,lip balm,biscuits,sweets and lots of other bits. what a lovely caring person they must be. xxx

barbara

User
Posted 09 Jan 2019 at 18:37
Hi

Tony was seen by his oncologist today , his PSA was 26 before chemo and has come down to 3.5 after 4 treatments, he would like Tony to have 10 if possible but if not at least 6, he will arrange a scan after the 6th and will see him again at the end of feb and before his 7th chemo. Hopefully his PSA will have come down more and the scan will not show up any more spread.

regards barbara

User
Posted 09 Jan 2019 at 20:46
Brilliant Barbara, that’s a good start to the new year :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jan 2019 at 12:01

Thats great news indeed! 

User
Posted 10 Jan 2019 at 20:40

Thats a fantastic response. Great news.

Ido4

User
Posted 11 Jan 2019 at 17:20

Hi Barb

Great news!

I have been following your postings since I was diagnosed, encouraged by the way Tony has lived life to the full despite his treatments

At the time I thought I would not be around for long not having any experience of how this cancer rolls out. That was 10 years ago. So, as an encouragement to those newly diagnosed please don’t let your fears work on your imagination

One day at a time and enjoy the ’now’

Follow Tony’s example and try to live life as normally as possible. We don’t know what the future holds

Kind regards

Ray

Edited by member 11 Jan 2019 at 18:25  | Reason: Spelling mistake

User
Posted 11 Jan 2019 at 18:51
Hi Ray

I did panic when Tony went on chemo but now have calmed down, he is having a blood transfusion on tues due to anemia but that is mainly due to his kidneys although the chemo hasn't helped, he is having a scan in feb before the 7th chemo treatment so I am hoping for good news there. onwards and upwards as they say. It will be 13 years in april that he actually got the diagnosis but 13 years last sept when his journey actually started.

all the best

Barbara.

User
Posted 11 Jan 2019 at 23:31

x

Ray

User
Posted 27 Feb 2019 at 10:32
Tony has just seen onco, psa down again to 2.7 and lympth nodes have shrunk a bit so good news, is going to have the full 10 chemo sessions and after that maybe RT to the lymph nodes if his kidneys are ok, for some reason his kidney function has gone up from 9 to 11, so hopefully they will remain stable like that for a while.

barbara.

User
Posted 27 Feb 2019 at 10:39
Great news. You two are real fighters and an inspiration to us all!
User
Posted 27 Feb 2019 at 20:20
Well done. Hope the improvement continues.

Keep up the fight.

Ray

User
Posted 27 Feb 2019 at 21:27

Hope things stay stable Barbara , you continue to inspire us new guys. 

Chris.

User
Posted 24 Mar 2019 at 07:57
Hi

Tony had chemo no 8 on Friday and since then the last 2 nights he has been leaking urine whilst asleep, has anyone else had anything like this? thanks

barbara

User
Posted 12 Apr 2019 at 08:56
Hi

Tony is off for chemo no 9 today and is still keeping quite well, lots of tiredeness and a dodgy stomach for a few days after chemo, tends to spend a lot of time sleeping no 10 and the final one on may 3rd and then see onco the following week to see how it has all gone and next steps, hopefully get a holiday in before next lot of treatment.

regards barbara

User
Posted 13 Apr 2019 at 16:32

That’s great Barbara, John did all 10 and even though his PSA was clearly creeping up from 6 plus we don’t regret any of it. 

Fingers crossed for a great result and a fab holiday.

Love Devonmaid xxxx 

User
Posted 13 Apr 2019 at 18:11
Fingers crossed for you, Barbara
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 May 2019 at 08:31
Tony was fine all through no 9, couple of little niggles in the first couple of days but that was all, he had no 10 yesterday will see the Onco next Wednesday and then see hopefully what next steps will be, hope to get a holiday in before any more treatment starts.

barbara xx

User
Posted 04 May 2019 at 20:40

A

ways think of you both Barbara, hope you get your holiday, you so deserve it xxxx

love Devonmaid 

User
Posted 04 May 2019 at 22:20
Thanks Devonmaid

hope John is feeling a bit better hopefully get back on treatment xxxx

love barbara x

User
Posted 09 May 2019 at 16:05
Tony saw his Oncologist yesterday, his psa has risen slightly to 3.7 which is disappointing asked about holiday and he said he was happy but would like to do more blood test at the end of the month to make sure all is still ok, wanted to go at end of the month as zoladex is due 11th june and renal appt on 17th june but hey ho. has to be weaned off steroids over about 8 weeks and will then go on to another treatment not sure what one yet as the one dr wants to put him on might react to his clopidogrel he is on so is being checked to see. scan in 2 months , renal doc wants to put tony on epo injections for anaemia but these cause more side effects in cancer patients so we will see.

barbara x

ps. he was also happy for Tony to go on holiday without travel insurance as long as it was Europe .

User
Posted 17 May 2019 at 21:23
Just received letter from oncologist confirming it will be abiraterone will be more suitable for him so hopefully that will work. x
User
Posted 12 Jun 2019 at 09:15

Tony started on abiraterone yesterday so now another journey begins, he was told to take the tablets with water but this morning he took them with orange squash, does anyone no if this is ok please?

 

thanks barbara

User
Posted 12 Jun 2019 at 15:22

Forgot to say we got our holiday in, went to Fuerteventura and Tony did ok, seemed to have a bit more energy by the time we returned on sunday so that was good.  

barbara

 
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