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Kidney failure

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User
Posted 30 Sep 2021 at 20:33

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 

e 

User
Posted 26 Jan 2022 at 21:50

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 22:51

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 18:42

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 25 Sep 2022 at 23:50

So sorry to read this update - mets to the skull are a whole new ball game as it is so difficult to predict the side effects. Numbness is at the better end, loss of sight and loss of hearing being at the other end.

Hopefully, the abi will indeed slow it down for a good long while but if you haven't already done so, now is time to ask about things like referral to hospice team and / or pain clinic, applying for PIP, etc.

Edited by member 25 Sep 2022 at 23:50  | Reason: Not specified

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

User
Posted 12 Oct 2022 at 15:58

So sorry to read this update. Really hope that they can get Gary sorted and some radiotherapy to help with the spinal cord compressions. Such a difficult time you are having, hope you can manage to keep strong. Thinking if you and sending lots of best wishes x

User
Posted 12 Oct 2022 at 22:56

Fiona,

I don’t know much about it, I’m sure others will be able to provide a bit more information, but I was watching a video seminar on lutetium 177 and wondered if it would be an option for Gary? Not sure how available it is in the UK but maybe worth an ask. I believe the cells have to produce PSMA for it to work and other standard treatments have to have been tried first (which they have with you). Hope he is ok and comfortable tonight x

User
Posted 15 Oct 2022 at 19:20

Sorry to see this Fiona.

I’m sorry I can’t help to answer the question too, hopefully someone will come on to do that soon.

Really hope it is just a case of it getting worse before it gets better 🤞🏼 must be worrying all the same x

 

User
Posted 15 Oct 2022 at 21:04
I really feel for you. My OH is in a similar place, having just had his second SCC and possible skull mets - but our kids are grown. With both SCCs it has taken time to respond fully to the radiotherapy, but he is out of hospital with regained mobility now. 10 sessions is a lot (my oh had 1 first time then 5 second) so presumably there is a lot to treat. I hope you are getting some support from local palliative care team (if not, ask for it) because they have hooked us up with so much practical support (eg local physio) and it’s so great to know they are there. I will be thinking of you.
User
Posted 16 Oct 2022 at 22:39
Hopefully, the paralysis is a temporary thing as the RT can cause some inflammation to the area. The urinary retention could be linked to the paralysis - if so, bowel problems are also likely. Hoping things look brighter tomorrow.

Have you told the oncologist or oncology nurse that the ward nurse and physio provided conflicting information? I would want some assurance that the physio had read the notes and knew what s/he was talking about :-/

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

User
Posted 17 Oct 2022 at 22:18
Like franci says, he needs to be tested to see if he is PSMA+ first and I am not sure you have time to arrange those scans as you would have to wait until he is stabilised and out of hospital before you could arrange for him to go to a centre which offers PSMA scanning (unless of course the hospital where he is an inpatient happens to have PSMA scanning capacity). Only once you know that he is PSMA+ is it worth exploring NHS availability and private options but in reality, as Lut 177 is often given once every 3 months, he would have to survive for a year to get the benefit and that, sadly, is looking less likely now. Also need to ask whether the brain cancer affects suitability - it may be that the potential side effects of delivering RT direct to the lining of the brain would just be too great.

More immediate change might be if you can persuade the onco to switch to apalutimide on the basis that the abiraterone failed within 3 months. If the onco says that isn't possible because you are now 14 weeks on, ask about stilboestrol, an old fashioned treatment but sometimes comes up trumps for men who are unsuccessful with abi / enza / apa.

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

User
Posted 20 Oct 2022 at 17:23

Hi

That's terrible news to hear,I am 6 months into my journey and it makes my head drop when I hear stories like yours,I felt I needed to message and I'm thinking of you both.I know it's easy said but please try to be strong for your other half and child.

Regards Phil 

User
Posted 20 Oct 2022 at 19:22

So sad to read this latest post, have been thinking of you both and had hoped we might hear some better news soon.

Can only imagine what you are going through. Hope you manage to get all the support you can to help care for Gary and your little girl. And hope Gary can remain comfortable and pain free.

Our thoughts, love and best wishes are with you x

 

 

User
Posted 05 Dec 2022 at 18:33

So sorry Leahy to read that, your final paragraph was the saddest yet most inspirational thing I've ever seen on here.

Hope you and your little girl manage to stay strong for each other. X

User
Posted 06 Dec 2022 at 01:08
Leahy, devastated for you. I hope that you have good support around you and are able to take some breaks, even if just short ones. You will be no good to anyone if you become exhausted. A common phrase but important - who cares for the carer?

> from me too xxx

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

User
Posted 06 Dec 2022 at 07:00
So sorry to read this, has put tears in my eyes.

My Dad passed very gently in the end after a similar traumatic time with paralysis etc.

He was squeezing my hand in the way we agreed would show he was comfortable. That was 20 years ago but it reassures me and my mum to this day.

User
Posted 06 Dec 2022 at 16:54
Dear Leahy, So sad, my heart goes out to you. This disease is so cruel. Try to keep your strength up, you’ll need every ounce.

Leila x

User
Posted 06 Dec 2022 at 17:01

So sorry to read this. It’s a cruel disease. 

Ido4

User
Posted 06 Dec 2022 at 20:41
Leahy, so sorry for the difficult time you're all going through. I hope Gary can be as comfortable as possible.

You're daughters words say a lot about your family and bought tears to my eyes. I'm sure you will look after each other at this difficult time.

Cheers

Bill

User
Posted 06 Dec 2022 at 20:47

I posted yesterday but really can’t find it sorry.

 

Really heartbreaking to read your latest update. Have been thinking of you and wondering how Gary was getting on. 

 

You obviously have a very brave courageous young lady on your hands. And what beautiful words she had for her daddy.

 

Glad to hear that Gary is relatively pain free. I also pray this time will be gentle for Gary and for you and your little girl. Our thoughts are with you and we send lots of love and best wishes xx

 

User
Posted 06 Dec 2022 at 22:37

So heartbreaking to hear this news. My thoughts are with you both.

User
Posted 24 Feb 2023 at 15:25

I haven’t been able to come on this site for a while ,

 

my brave Gary  lost his fight on the 21st January , he made it  home  for Christmas new year and my birthday on the 6th January .

he returned home on the 22nd December  from the hospice  and mental I got my old Gary back , all the confusion disappeared and for a few weeks we had a great time.  , I’m forever grateful for the hospice applying for a night carer so I could get some sleep but I pretty much looked after him and cared for him and he died in my arms . Our daughter ciara was there too , only 4 I don’t think she completely understood what had happened 

His mental strength throughout was unbelievable and even in those very dark moments of facing death he never broke . The Thursday before the palliative care nurse had. Come to see him and she asked how he was , “ feeling … he said “ I feel like death “ within a couple of hours he feel into a sleep and apart from once when we tried to make him more comfortable did he call my name . 

He said he had a great life and at 55 said he had achieved so much . 

His celebration of life service was last week and he had a great send off , 

 

so daddy is in heaven eating cotton candy , and drinking coffee , she asked can we go to heaven on his birthday to give him his presents , you got to love a 4 year olds innocent mind .

 

Much  love to everyone 

 

fiona 

 

User
Posted 24 Feb 2023 at 17:11
So so sorry for your loss Fiona. I’ve been thinking of you often over the past couple of months and had hoped to read of some sort of miracle ❤️

You’ve been incredible looking out for and caring for Gary while also looking after your little girl, I’m sure these past months have been so difficult I can’t even imagine. Our thoughts are with you and Ciara, and so pleased to hear you all managed to spend some really lovely times together over Christmas.

Lots of love

Elaine xx

User
Posted 26 Feb 2023 at 17:14

Many of us are members of one club or another that know most of the members. However, this group is more than a club and we though not see each other but are closer and loss of one is felt deeply by others.  

Fiona so sorry to hear of your loss. Please accept my sincere condolences.

Fred

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User
Posted 01 Oct 2021 at 18:42

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 09:44

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 12:53
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 13:15

 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 20:02

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 21:00

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 21:19  | Reason: Not specified

User
Posted 03 Oct 2021 at 01:44

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 14:59

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 19:06

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 20:26

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 08:12

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 11:14

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 21:50

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 21:53

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 22:51

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 22:56

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 23:01
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 23:06

, 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 14:45
The cheese must have been off 🤷‍♀️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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