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Kidney failure

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User
Posted 15 May 2022 at 18:23

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 01:55
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 09:12
I can't see any mention of Enzo or ABI in your profile? Have you tried those?
User
Posted 30 Jun 2022 at 11:00

I thought I’d give a quick update on Gary , 

he completed 6 cycles of chemo , apart from feeling tired and hair lose , it went well . He had scans done after his 3rd cycle and results came back mixed but PSA was dropping and they couldn’t be sure if bones were healing as it showed changes in the bones . 

his PSA didn’t go under 85 and on his 6th cycle it had gone up to 120 . Not quite sure what to make of the jump but he had a full body bone scan last Friday so fingers crossed .

oncologist did mention further chemo 7th cycle but I’m guessing they are waiting on scan results to see if chemo is working . 

it  feels incredibly hard to stay positive , with such high PSA results and gary since dropping the doses of steroids saying his hip and leg are hurting . Ibuprofen are keeping the pain at bay . 

Hopefully there will be another option for gary . 

any advice is always grateful 

User
Posted 02 Jul 2022 at 00:48

Sorry to read this with the rise in PSA. I can understand why it’s difficult to stay positive and I know I would feel the same. My husband always has the odd ache and pain and I worry that it’s PCa related, but in truth it probably isn’t. 

I’m sorry I’m not in a position to offer any advice but hopefully someone else will be able to. 

Wishing you all the very best x

User
Posted 02 Jul 2022 at 13:19
Fiona, I think at the next appointment you need to ask whether it is time to add enzalutimide, apalutimide or abiraterone snd if they are not considering any of those, an explanation of why not.

I would be reluctant for my man to just have more chemo at this stage. He is hormone refractory (also referred to as castrate resistant) so abi / enza / apa is the obvious next step to try to stop the cancer in its tracks. If there is a medical reason why they think Gary couldn't tolerate this, they really need to explain that to you

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

User
Posted 02 Jul 2022 at 16:29

Thank you Lyn,

Garys appointment with oncologist is on the 12th July so will asked , as I feel a chemo isn’t the best option now too . He has liver mets so unless they are reasons why he can’t take it .

will keep you posted on what happened and thank again for your advice 

User
Posted 13 Jul 2022 at 10:38

Gary had his oncologist appointment yesterday , his PSA is rising so chemotherapy has stopped . He has had quite bad pain in his left leg and generally feeling pretty rotten since coming off steroids .

he has been give a week worth of steroids and them next Tuesday will start Abiraterone ( just like you mentioned Lyn ) 

fingers crossed this will stop the cancer in its tracks for a while .. 

Schools out for summer so my next call is to book a lovely all inclusive hotel . 

User
Posted 13 Jul 2022 at 13:29
Have a great holiday!
User
Posted 13 Jul 2022 at 13:43

Thank you we all intend too . I wish cancer never crossed our path but it has truly make us live our lives to the full . 

 

User
Posted 25 Sep 2022 at 22:21

I thought I would give an Update on Gary ,

we managed a lovely holiday and he celebrated his 55th birthday , 

He started Abi his PSA had  rose to 393 ( from 191) three weeks earlier. Five weeks in his PSA was 425 . Oncologist said that the rate of rise has slowed down so that’s good , is it working ?

he has become very tired and had trouble sleeping at night  so prescribed sleeping tablets . His sleeping is better now so stopped them after a week  Generally he has one good day and 4 bad days . 

his NE bone scan showed widespread bone mets throughout his axial skeleton and skull vault . He has a numb chin and lip the last few days so not sure if that is the effects of the bone infusion or something else.

I feel like he is Losing this battle . 

 

 

 

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 26 Sep 2022 at 09:18
Sorry to hear this news, hope they can sort something out for you guys..
User
Posted 26 Sep 2022 at 14:33

Thank you , 

gary doesn’t know he has skull mets , the oncologist told him there were advancements of bone disease on his latest scan ….. I only read the whole body scan report to find out . Knowing Gary I don’t think I should tell him and have kept it from him for over a month ., but equally he is having thoughts  “ of this is the end “ and how long can I go on like this …. I think if he knows this he will fall into a depression . 

on a good day he can walk around 3 miles , the school run , there and back and go out and about , the bad days he stays in and watches TV . ( which I think would depress anyone ) 

we have lead a good life since diagnosis and Gary has always had the opinion of treating himself and ordering the most expensive thing on the menu , there will always be regrets of things you didn’t do , that’s life and trying to be happy with that it’s hard . 

 

User
Posted 12 Oct 2022 at 13:41

Just a little update on gary , he has been complaining of a sore back for a few weeks on Saturday he could hardly work ,phoned oncologist nurse who said symptoms didn’t seem like cord compression but in my heart / head knew something g wasn’t right .gary had oncologist appointment and while there  he had an MRI scan yesterday and by the time we got home the hospital had rang to say he needed to go to AandE immediately, I drove him across London as scan showed two spinal cord compressions. He’s now on a massive dose of steroids and awaiting I hope radiotherapy. 

 My poor gary seems to always be in that 1or 5 or 10 per cent of the worse things happening to him . I knew these days would come but I want him to be here forever 

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 16:30

Thank you , 

im trying my best for my four year old daughter , who doesn’t really know what is going on and lucky my brother has been able to take her for a couple of nights . I arrived at the hospital and he is going to have a CT scan . 

 

User
Posted 12 Oct 2022 at 17:04

You’re obviously doing a great job keeping everything going. Glad you have some family support aswell. Keep us updated with how he gets on….you will definitely be in our thoughts 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 12 Oct 2022 at 23:32
Sorry to see this Leahy; the first thing will be to stabilise the spinal cord and prevent permanent damage so fingers crossed that the RT is possible and effective. I am not sure whether they are thinking that the SCC is a new development or whether it just wasn't making its presence known at the scans in the Summer but if the onco is thinking that the abiraterone has failed already, it might be worth asking whether he can change to enzalutimide or apalutimide. Generally, you can't have the others once one has failed but there is an exception for the first 3 months and G is just inside that?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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