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abiraterone started

User
Posted 19 Jun 2019 at 17:35

Hi


Thought I would start a new thread now Tony has started abiraterone, started last week and so far no side effects, he has been told to check his blood pressure once a week as it can make it high but so far ok. Tony received a copy of the letter from the cancer/Macmillan nurse who is in charge of his medication and it said he is now on palliative care, hopefully this will be for many more years. 


 


regards Barbara x

User
Posted 20 Jun 2019 at 16:25

Just completed 9 months on Abiraterone. A very smooth ride indeed.


My PSA has started to rise once again so Enzalutamide is next on the menu.


My best wishes to Tony and may his "palliative care" last for many years


Regards


Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 19 Jun 2019 at 17:35

Hi


Thought I would start a new thread now Tony has started abiraterone, started last week and so far no side effects, he has been told to check his blood pressure once a week as it can make it high but so far ok. Tony received a copy of the letter from the cancer/Macmillan nurse who is in charge of his medication and it said he is now on palliative care, hopefully this will be for many more years. 


 


regards Barbara x

User
Posted 20 Jun 2019 at 15:30
Good luck to you both and may palliative days be long lasting.

Ray
User
Posted 20 Jun 2019 at 16:16
Good luck and may it work for ages x

If life gives you lemons , then make lemonade
User
Posted 20 Jun 2019 at 22:05

Hope the Abiraterone does the job for a long time.

Ido4

User
Posted 20 Jun 2019 at 22:45

I have now been on abiraterone for almost three and a half years , no side effects I can tell and PSA has been steady at 0.14 for over 6 months.


still running ultramarathons and have finished day two of a three day charity trek for PCUK at over 30 miles a day so it can last a long time as I am currently still living testimony.


 

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 21 Jun 2019 at 04:00

Good luck 


John was put on Enzalutimide in January but I’m thinking it has now failed due to a big increase in pain this last week or so, from the main tumour site. We have an oncology appointment on Monday so will discuss with them. We were told to take BP twice a day on Enzalutimide due to the danger of malignant BP. It’s become routine, it’s surprising how different it can be from one day to the next but so far it’s been mostly ok except for when he had sepsis. 


Fingers crossed Tony does well, our men are pretty amazing aren’t they?


love Devonmaid xxx

User
Posted 21 Jun 2019 at 06:49
Hi Devonmaid

Thankyou and yes they are pretty amazing, we have to take Tony's BP once a week and so far it has been ok, I hope John gets on ok on Monday and the Enzalutimide has not failed so fingers crossed for John.

barbara xx
User
Posted 11 Jul 2019 at 17:06
Hi
Tony has been on abiraterone now for 4 weeks, his PSA has dropped to 1.2 and his scan on Monday came back as stable, he has had no side effects at all apart from his energy seems to be returning, so far so good.

Barbara.
User
Posted 11 Jul 2019 at 21:39

I was on aberaterone for about a year until it stopped working,but had no side effects at all.
Palliative seems to be used for different things in different places,but basically refers to a treatment which will slow the progress of a disease,and often stop it in it's tracks,but is not a " cure "
Health workers often seem oblivious to the sensitivity patients feel when such words are used.


Hope you have many more years together.


 




Edited by member 11 Jul 2019 at 21:41  | Reason: Not specified

"Terminal " does NOT mean imminent!!

User
Posted 12 Jul 2019 at 09:49

Great news and long may it last


love Devonmaid xxxx

User
Posted 17 Aug 2019 at 11:05

Hi Barbara,


I understand your concerns and yes you do have to be very motivated to do PD correctly and safely, I am a lot younger and wanted to stay in work. It is what works best for you, and what you feel you can sustain long term.


Just another point though about Haemo. I started at GFR 7 but only had to do two sessions a week, and because I still passed enough urine (I got some strange looks from fellow patients as I was the only one asking for a bottle halfway through!), never had to have excess fluid taken off.  i also had a low pump speed which helped preserve remaining function. The good news is I did feel a lot better once started, the energy came back.


I too am struggling with Phosphate, like you say it's in everything, especially ready meals and cold meats.


I wish you both all the best for the future


Regards


Ian

User
Posted 20 Oct 2019 at 01:40
It could just be the cancer cells dying off, Essexbabe
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Oct 2019 at 20:44
Hi Barbara.

Long time away from here so catching up some. Tony and yourself are going through tough times again but hopefully as then you will pull through.

Ray
User
Posted 31 Oct 2019 at 01:54

😆😆🍷🍷 x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Oct 2019 at 08:51
That reads hopeful news. Fingers crossed for you both.

Ray
User
Posted 31 Oct 2019 at 12:53

Hope RT goes well. 

Ido4

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User
Posted 20 Jun 2019 at 15:30
Good luck to you both and may palliative days be long lasting.

Ray
User
Posted 20 Jun 2019 at 16:16
Good luck and may it work for ages x

If life gives you lemons , then make lemonade
User
Posted 20 Jun 2019 at 16:25

Just completed 9 months on Abiraterone. A very smooth ride indeed.


My PSA has started to rise once again so Enzalutamide is next on the menu.


My best wishes to Tony and may his "palliative care" last for many years


Regards


Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 20 Jun 2019 at 22:05

Hope the Abiraterone does the job for a long time.

Ido4

User
Posted 20 Jun 2019 at 22:45

I have now been on abiraterone for almost three and a half years , no side effects I can tell and PSA has been steady at 0.14 for over 6 months.


still running ultramarathons and have finished day two of a three day charity trek for PCUK at over 30 miles a day so it can last a long time as I am currently still living testimony.


 

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 21 Jun 2019 at 04:00

Good luck 


John was put on Enzalutimide in January but I’m thinking it has now failed due to a big increase in pain this last week or so, from the main tumour site. We have an oncology appointment on Monday so will discuss with them. We were told to take BP twice a day on Enzalutimide due to the danger of malignant BP. It’s become routine, it’s surprising how different it can be from one day to the next but so far it’s been mostly ok except for when he had sepsis. 


Fingers crossed Tony does well, our men are pretty amazing aren’t they?


love Devonmaid xxx

User
Posted 21 Jun 2019 at 06:49
Hi Devonmaid

Thankyou and yes they are pretty amazing, we have to take Tony's BP once a week and so far it has been ok, I hope John gets on ok on Monday and the Enzalutimide has not failed so fingers crossed for John.

barbara xx
User
Posted 11 Jul 2019 at 17:06
Hi
Tony has been on abiraterone now for 4 weeks, his PSA has dropped to 1.2 and his scan on Monday came back as stable, he has had no side effects at all apart from his energy seems to be returning, so far so good.

Barbara.
User
Posted 11 Jul 2019 at 21:39

I was on aberaterone for about a year until it stopped working,but had no side effects at all.
Palliative seems to be used for different things in different places,but basically refers to a treatment which will slow the progress of a disease,and often stop it in it's tracks,but is not a " cure "
Health workers often seem oblivious to the sensitivity patients feel when such words are used.


Hope you have many more years together.


 




Edited by member 11 Jul 2019 at 21:41  | Reason: Not specified

"Terminal " does NOT mean imminent!!

User
Posted 12 Jul 2019 at 09:49

Great news and long may it last


love Devonmaid xxxx

User
Posted 14 Aug 2019 at 08:18
Tony saw chemo nurse on Monday and PSA is now below 1 not sure of exact figure as she didn't give it but said it was almost undetectable so that was good, the bad news is Tony's kidney function is now down to 8 and his renal doctor has said he will start him on dialysis at 7 so that is not good, don't really no how Tony will cope with 3 days a week on dialysis sat at a machine for 4 hours at least and until they get it right he will have to go to Lincoln to get it done, will have to use hospital transport as he will not be able to drive after the dialysis until they see how he reacts to it, that means he will be all day as the hospital he will go to is at minimum an hour away.

Barbara
User
Posted 16 Aug 2019 at 08:59

Hi essexbabe,


I too got hit with PCa and Renal failure at the same time in late 2017. Had the radical surgery which seems successful so far, but had to go on Haemo for a while and then transferred to PD. I then had a PD induced hernia, which proved to be most fortuitous as when I stopped dialysing they discovered some renal function had come back!  


Anyway, having had both modes of dialysis, I can firmly say I preferred PD, after the initial training, there were few hospital visits and many more benefits. Is your OH eligible for this modality? 


All the best,


Ian


 

User
Posted 16 Aug 2019 at 09:38
Hi Ian
he did think about PD but decided on Haemo, he is not very good at following instructions and I think I would have had to do all the set up etc so decided against it, he has had ckd for at least 10 years and hasn't had any side effects from it at all so was hoping to keep off dialysis for a bit longer, what with the hospital visits for kidneys and PC we feel that we are there all the time at the moment, 4 hospital appts in the last 2 weeks alone, still could be worse.

regards Barbara
User
Posted 16 Aug 2019 at 11:50

Hi Barbara,


I'm going to come across all evangelical, so apologies in advance. As Tony won't be having a transplant he will be on the big D for life. Therefore keeping the residual function even down to 0.5 GFR is beneficial in maintaining health. Haemo shuts the kidneys down quite fast and then the fluid and diet restrictions hit hard. PD helps preserve remaining function. If you do CAPD with a GFR of 7 you can probably just do 3 exchanges a day which = 3 * 30 mins which = 10.5 hours a week; a lot less time than Haemo when the travelling and waiting around is taken into account. Plus you are in control. Travelling home and abroad is much more doable, in this country you just take the fluid with you in the car. I did a couple of trips close to home to gain confidence, and then you're off. A weekend abroad is all about using one suitcase for D stuff and again independent. Please look into it for QOL, I've done both and PD is so much more flexible.


All the best,


Ian


 


 

User
Posted 16 Aug 2019 at 15:48
thanks Ian
we had thought about it but have decided against it, if he did PD it would be down to me to do the organising of it making sure everything was sterile and putting him on and off of it, I would be completely tied to it and don't feel I could commit myself to that.
Tony finished 10 rounds of chemo in may and is not that good at looking after himself , Taking his medication at the right time etc and I think the pd would put even more stress on me. Tony will be 75 in nov (was 61 when diagnosed with PC) he has also had a stroke at 66 and then diagnosed with ckd a year after that. He is at the moment trying to get his phosphate level down as it is too high and that is a nightmare in itself as virtually everything has phosphate in it. Thanks for your kind reply but he will be sticking to the dialysis.

all the best

barbara
User
Posted 17 Aug 2019 at 11:05

Hi Barbara,


I understand your concerns and yes you do have to be very motivated to do PD correctly and safely, I am a lot younger and wanted to stay in work. It is what works best for you, and what you feel you can sustain long term.


Just another point though about Haemo. I started at GFR 7 but only had to do two sessions a week, and because I still passed enough urine (I got some strange looks from fellow patients as I was the only one asking for a bottle halfway through!), never had to have excess fluid taken off.  i also had a low pump speed which helped preserve remaining function. The good news is I did feel a lot better once started, the energy came back.


I too am struggling with Phosphate, like you say it's in everything, especially ready meals and cold meats.


I wish you both all the best for the future


Regards


Ian

User
Posted 18 Oct 2019 at 09:29

Tony saw the chemo nurse yesterday and PSA is now 1.7. was 0.07 4 weeks ago so has started to rise quite quickly I thought but the nurse seemed as if it was ok, Tony see's his oncologist for the results of a scan he had at the beginning of the month on 30th October so will find out then what is going on, hopefully node in the back is staying stable. Tony has not had any side affects from the abiraterone so hopefully it is still working.


 


regards barbara

User
Posted 20 Oct 2019 at 01:40
It could just be the cancer cells dying off, Essexbabe
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Oct 2019 at 20:44
Hi Barbara.

Long time away from here so catching up some. Tony and yourself are going through tough times again but hopefully as then you will pull through.

Ray
User
Posted 30 Oct 2019 at 22:24

Tony saw oncologist today and I told him nephrologist has said he would rather cancer was dealt with and he could delay kidney treatment so Dr P is going to see if he can do RT on lympth nodes without damaging kidneys more so hopefully he will start RT in December, will have a RT scan soon and that will determine weather this will go ahead so fingers crossed. will mean 5 weeks of a 100 mile round journey but its worth it and when Tony had RT when first diagnosed he sailed through it with no real side affects so hopefully this will be the same.


 


onwards and upwards. 


 


barbara 


 


ps been on the red wine so ignore typo's xx

User
Posted 31 Oct 2019 at 01:54

😆😆🍷🍷 x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Oct 2019 at 08:51
That reads hopeful news. Fingers crossed for you both.

Ray
User
Posted 31 Oct 2019 at 12:53

Hope RT goes well. 

Ido4

User
Posted 05 Nov 2019 at 13:20
Bit of advice needed, whenTony was on RT last time (14 years ago) he did not have to do any preparation this time he has, what foods do anyone recommend to help prevent the build up of wind ( believe me he needs this cause he is very windy) also he has to have a micro enema that he has to do before the RT and I think he will have to do this at the unit as it is a minimum of an hour away, how easy is this to do. Any other tips would be appreciated. thanks

barbara xx
User
Posted 05 Nov 2019 at 16:58

I can't remember the exact term but it is like a low fibre diet - a low emissions diet? Nothing that will cause wind or irritation (wholemeal wheat, bran, pulses, etc.) It is quite restrictive. I basically lived on white bread, fish and stuff like that. Boring but it did help.


I took my enema at the hospital. I made sure I was at least fifteen minutes early. Easu to apply, snap, shove, squeeze (trousers and pants down first of course!!!) :) The reason I say that is that when it kicks in you may need several visits to the loo before it settles down and you do not want to have the runs on the bench!


I nearly did wet the bench one day as things got delayed after my drink, so keep an eye on drink timing too.


Good luck.


PP


 

User
Posted 05 Nov 2019 at 20:50

Hi Pete


thanks for your reply, last time he used to drink the water on the way to the hospital this time he has to empty his bladder when he gets there, he has to be there an hour early and then drink 4 cups of water when he gets there, everything is so different.  


 


regards Barbara x


 

 
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