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Kidney failure

User
Posted 30 Sep 2021 at 19:33

Hi 

my husband gary has been diagnosed for nearly 6 years with advanced prostate cancer (48 years old ) 

he had upfront chemo and 12 weekly injection and until June his psa was rising wit no concerns till it doubled fro 10 to 20 so they started him on bicucaluamide  in a month psa has dropped to 18 

he experienced going to the toilet a lot  (6 times a night ) and phone to see the oncologist earlier than his appointment date . They ran  some tests and told him to come in as his kidneys are not working correctly .) he has a kidney injury and acute kidney failure. ) an ultra sound showed after going to the toilet he still has a litre of water in his bladder . 

the urologist came around this morning and told him he would have a TURP operation to shave the prostate as it obstruction on his urethra .

 

I didn’t know he would be able to have this operation ?? With advance cancer in his lymph nodes .

any words of wisdom would help 

 

thank you 

Fiona 

User
Posted 26 Jan 2022 at 20:50

I had a TURP, plus advanced PCa diagnosis in Dec 2019. Bone (pelvis and hips), liver mets, plus invasion of bladder. The chemo in early 2020 totally hammered the liver mets. Fingers crossed for you both.

User
Posted 26 Jan 2022 at 21:51

Originally Posted by: Online Community Member

Have they said about changing on to other HT if bicalutamide isn’t working? Hopefully they will soon to get control of it.

I can imagine it’s so difficult with a 4 year old, but I’m sure he/she is often what keeps you both going too, and what brings joy to most days.

Keep us posted and take care 

No, the bicalutimide is as well as HT injections because the HT wasn't working well enough on its own 

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

User
Posted 01 Oct 2021 at 17:42

Hi fiona

Here is a thread I posted to about catheters, just in case your husband finds himself needing to go down this route.

https://community.prostatecanceruk.org/posts/t22995-Escaping-the-Catheter

I don't know that advanced cancer would prevent a turp. I can't think that it would. Maybe someone else will pick up on this post and reply. 

 

Dave

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User
Posted 01 Oct 2021 at 17:42

Hi fiona

Here is a thread I posted to about catheters, just in case your husband finds himself needing to go down this route.

https://community.prostatecanceruk.org/posts/t22995-Escaping-the-Catheter

I don't know that advanced cancer would prevent a turp. I can't think that it would. Maybe someone else will pick up on this post and reply. 

 

Dave

User
Posted 02 Oct 2021 at 08:44

Thank you Dave for your reply ,

 

ww made it home last night, I noticed quite a lot of blood in the bag and a cloth when gary was having a shower . He managed to get a good 5 hours sleep so that’s a massive improvement. 

He needs to return on Monday morning to the hospital for blood tests and a scan so we should know a bit more next week . 

 

User
Posted 02 Oct 2021 at 11:53
Have they done the TURP, Fiona?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2021 at 12:15

 No not yet ..

they told him it will be in the next 5 weeks , I thought that was a long time to wait 

fiona

User
Posted 02 Oct 2021 at 19:02

He has also been given 2000ml night bag , single use . And 1 day bag ( 5-6 day )

silly question a single use night bag can be used for how long ? 24 hours   ??

annoyed as hospital only gave him 2 night bags , is there anywhere we can get them pharmacy  ??  

The hospital is quite far away but will travel back there tomorrow 

 

User
Posted 02 Oct 2021 at 20:00

Originally Posted by: Online Community Member

He has also been given 2000ml night bag , single use . And 1 day bag ( 5-6 day )

silly question a single use night bag can be used for how long ? 24 hours   ??

annoyed as hospital only gave him 2 night bags , is there anywhere we can get them pharmacy  ??  

The hospital is quite far away but will travel back there tomorrow 

 

 

In our area in the "home environment" a night bag can be used for 7 days. Single use also has an hospital definition meaning only use on one patient. Some night bags have a tap that means they can be emptied and reused, with some other bags you have to break the tap off or cut the corner of the bag off. What night bag have you got.

I have had a catheter constantly for the last four years. Some areas and district nurses say a new night bag each night , our area will only issue one night bag for 7 days. 

A leg bag is good for 5-7 days. Again there are two schools of thought on nights / leg bags. I attach my night bag to the leg bag at night, in the morning I detach the night bag rinse the outlet and inlet and leave it for the next use. 

Others prefer to remove the leg bag and replace it with the night bag. The issue I have with that is NHS advice says once an item is removed it should be replaced with new. The exception being the night bag. Over a week constantly disconnecting the catheter twice a day is probably a small risk of damage. Disconnecting and reconnecting twice a day for 8-10 weeks increases the risk of damage and accidentally pulling on the urethera.

You could get in touch with the district nurses, but they don't always carry spares.

Added , I attach the night bag tube to a thigh strap around my ankle, it helps reduce  accidentally pulling on the joint. Make sure joints are tight, nothing worse than waking up in your own urine.

Thanks Chris

Edited by member 02 Oct 2021 at 20:19  | Reason: Not specified

User
Posted 03 Oct 2021 at 00:44

Rather than go to the hospital for supplies you may find there is a continence service run by district nurses, who can supply bags etc. That is the case in my area and it is closer than the hospital. 

Dave

User
Posted 04 Oct 2021 at 13:59

Thank you for your replies . 

Gary is booked in for a CT scan tonight and a bone scan in Thursday .

 

some test results came back today and his C Reactive protein is 18.2mg/l on the 1st October and had been 3.8mg/l the day before . I’m trying not to goggle this as it really scares me .

 

any advice on why the jump .?

 

he managed the tube for the blood tests this morning so he’s in a lot better shape than he was a few days ago with the catheter .

 

User
Posted 25 Jan 2022 at 18:06

Hi all

 

we have had a rough few months, Gary had his TUrP operation as planned and finally managed to have a full nights sleep without waking for the toilet .

 

unfortunately today he has been told his cancer has spread to his spine L5 (after results of his bone scan ) and has found spots on his liver .

His oncologist has recommended chemo again 😩 

 

his PSA has been doubling monthly and is now 97 .

 

 

User
Posted 25 Jan 2022 at 19:26

Really sorry to read this Fiona. 

Hope that he can start the chemo soon and get his PSA under control and lowered. Is he on any HT?

The one thing I read quite a lot about this disease is that there seems so often something that can be done and many treatments to explore….and with the continuing research things change constantly.

I can understand it must have come as a real blow after everything he’s already been through, but I hope you’re both managing to stay positive.

Sending very best wishes x

User
Posted 26 Jan 2022 at 07:12

Hi ,

 

Yes he has been on HT since diagnosis, 

the 3 month injection and then in June 21 , bicaluamide which hasn’t really worked , ( well for a few months) 

trying to keep our hopes up , it’s not easy with a four year old ! Our little miracle in all this ‘

 

User
Posted 26 Jan 2022 at 10:14

Have they said about changing on to other HT if bicalutamide isn’t working? Hopefully they will soon to get control of it.

I can imagine it’s so difficult with a 4 year old, but I’m sure he/she is often what keeps you both going too, and what brings joy to most days.

Keep us posted and take care 

User
Posted 26 Jan 2022 at 20:50

I had a TURP, plus advanced PCa diagnosis in Dec 2019. Bone (pelvis and hips), liver mets, plus invasion of bladder. The chemo in early 2020 totally hammered the liver mets. Fingers crossed for you both.

User
Posted 26 Jan 2022 at 20:53

Thank you for your reply .

Gary had early chemo 6 years ago so it will be his second time around … 

I really hope it gives us some more time 

 

User
Posted 26 Jan 2022 at 21:51

Originally Posted by: Online Community Member

Have they said about changing on to other HT if bicalutamide isn’t working? Hopefully they will soon to get control of it.

I can imagine it’s so difficult with a 4 year old, but I’m sure he/she is often what keeps you both going too, and what brings joy to most days.

Keep us posted and take care 

No, the bicalutimide is as well as HT injections because the HT wasn't working well enough on its own 

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

User
Posted 26 Jan 2022 at 21:56

I’m worried how gary will cope with this chemo and how much more time it will gives us .

we had booked a trip to New York which will now be postponed until after chemo . 

User
Posted 26 Jan 2022 at 22:01
He tolerated it quite well last time J think? Generally, men on here have done well on docetaxel second time around if they did well first time. And having had such a good response, hopefully the cancer will be knocked back again for a few years.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jan 2022 at 22:06

, it seems so long ago now but he coped very well , the last few cycles I remember he got a few mouth sores but was never sick once .

Gary has only ever been sick twice in the time we’d  been together and that was from drinking too much red wine and cheese …. 🤢

I do hope so 

 

thank you Lyn 

User
Posted 27 Jan 2022 at 13:45
The cheese must have been off 🤷‍♀️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 May 2022 at 17:23

Just a quick update on Gary ,

 

he had cycle 5 of docextaxal last week , his PSA has gone down to 88 , he had CT scan and MRI scan after cycle 3 . Liver met have minor improvement and bone show changes, more enhanced on MRI could be progression or reaction to treatment .  Consultant said to continue as PSA is lowering .  
I thought it would have been lower after 5 cycles . ??

 

consultant has now said 10 cycles could be on the cards if body can withstand the chemo ..

Has anyone been in this situation as I thinking is there another treatment available after chemo . 

Feeling a little bit lost on this long journey 

User
Posted 17 May 2022 at 00:55
PSA is not always a reliable indicator for whether chemo is working - sometimes the PSA even goes up! The best indicator is how he is feeling, whether symptoms reduce and what the scans show afterwards (if scans are done)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 May 2022 at 08:12
I can't see any mention of Enzo or ABI in your profile? Have you tried those?
 
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