Today

Today

User

Posted 20 Jun 2025 at 15:41

Hi all,

Today myself and John went for his scan results. They showed cancer in the spine. He’s 84 and extremely frail. He’s at 7.5 stone now. He’s sleeping all the time.

History.
2015 diagnosed with prostrate cancer that had burst from the capsule. PSA was very high.

He had radiotherapy and started HT at the start.

3 years ago it came back so went on Bicalutamide alongside the HT. In March this year they stooped the Bicalutamide because PSA was rising again and at 13

He has spine pain and shoulder. He hasn’t eaten in weeks, but drinks fanta by the gallon. Weight is dropping fast.

My questions are? why are they not offering him anything other than dexamethasone?

They did a pelvic scan and full bone scan but couldn’t do a certain scan because his kidneys are in a bad way, so he said he couldn’t see something but forgot what that was.

Anyone had experience with dexamethasone?
My friend is on lithium/priadel for bipolar. I’ve been reading the side effects of the dexamethasone and I’m worried he will become nasty…,he is now to other people. The SE look awful.
Thank you!

Julile

Edited by member 20 Jun 2025 at 20:12 | Reason: Not specified

User

Posted 20 Jun 2025 at 22:54

Originally Posted by: Online Community Member

They will continue with the HY even though it’s not really working, and they will continue to monitor his PSA.

The hormone therapy will still be suppressing the cancer cells it always has. The problem is that some newer mutation cells have cropped up too for which the HT doesn't work.

You can't stay on Bicalutamide if that stops working, because one way it stops working is that the cancer mutates to use it instead of the Testosterone. This is why there can be a PSA drop when you come off Bicalutamide (which is called Anti-Androgen Withdrawal Syndrome, AAWS).

User

Posted 21 Jun 2025 at 13:22

One of my neighbours has chronic pain, occasionally she 'goes off on one', but I think it is the pain which is causing that personality trait.

I suspect he will start arguing with you soon, (same as with the couple with the dog), try and do your best for him, but do accept some people you can not help. I suspect his family and his medics have all reached that stage. He may stay longer with you, if you don't come into conflict with him over medication, that is probably what everyone else does. Your greatest value may not be in trying to keep him alive, but just giving him a better quality of life, whilst he will let you.

I am not too sure how prostate cancer kills people, because no one on this site has let the cancer kill them. It is usually the treatment with higher and higher doses of stronger drugs which causes death, but that is preferable to a slow painful death from the cancer. John seems perhaps unwittingly to be choosing a very unpleasant way to die.

Dave

User

Posted 22 Jun 2025 at 01:56

Quite right not to let him dictate who you should talk to or see. It could lead to him wanting to control you. This seems to have gone beyond a casual relationship to one where you have become heavily involved. What do your other friends think, they knowing you and the way this has developed?

Barry

User

Posted 22 Jun 2025 at 13:03

I suspect his kidney problems means he can't have a CT scan. It's kind of like an X-ray but more detailed, showing the structures of tissues and tumours in the body. It uses a special dye which is injected before the scan, and it's this dye which causes problems if a person has kidney issues. If the oncology team can't do a CT scan then they aren't getting the full picture of John's disease.

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User

Posted 20 Jun 2025 at 20:40

Hi Julie, I don't have any experience of dexamethasone or of dealing with the terminal stage of prostate cancer. Over the five or so years I have been on this site, there have been probably five or six threads where family members/carers have posted, and obviously we all offer the best support we can. There are also long running threads where the posts come to an end, and sadly one has to assume it is for the most obvious of reasons. If one is on a cancer forum, accepting death is inevitable is a good place to start.

I certainly can't offer any practical support. Based on similar threads, I think you will have to accept his life expectancy is less than six months. You need to prepare yourself for that. Quite honestly trying to keep an 84 year old man alive is going to be very difficult. If he was in perfect health in every other way, it might be possible, but ever drug goes through the kidneys and if those are failing, there are probably few drugs he can take.

I suspect the Fanta drinking (other carbonated drinks are available) is related to the kidney problem, there is no point in changing that. There is probably little point in trying to improve his diet. In fact if he said he was planning on taking up smoking Cuban cigars and drinking a bottle of whisky a day I would probably encourage it.

If he does become nasty, don't forget he's on medication and lots of pain, so you can only do the best you can.

I really don't know much about hospices, you should contact one (that may need a referral from his oncologist) they will be able to prescribe pain killers to make his life more bearable. I know he won't go in a hospice, but as posted previously they can deal with him as an outpatient.

If he needs to claim PIP (or similar benefit) he would get it immediately, but if he doesn't need the money don't spend precious days filling in benefit forms.

Good luck, you are a very kind person.

Dave

User

Posted 20 Jun 2025 at 21:40

Dave,

Many thanks.

I was left confused today. I can see him wasting away and going down fast, so I was surprised that he was just given a steroid and told to carry on.

Was this a way of telling him he’s at the end of the road? He didn’t seem interested in the fact he’s not eaten in a long time. He just said I can’t cure your cancer but I can slow it but this is all I can offer you.

I have to say I’m dreading the steroid treatment. The SE look terrible.

They will continue with the HY even though it’s not really working, and they will continue to monitor his PSA.
I hope the steroid improves his quality of life because at the moment it’s terrible.

Thanks again.

Julie

Edited by member 20 Jun 2025 at 21:40 | Reason: Not specified

User

Posted 20 Jun 2025 at 22:09

I am inclined to think that yes the doctor is saying he is at the end of the road. Of course it is difficult for a doctor to say that, and also for a random guy on the internet like myself to say that, at least the doctor has seen his records. What I can say is that what you have described is consistent with other posts on this forum which have resulted in a fairly short lifespan.

The doctor has not used the word terminal as far as I know, but I suspect that is the case. Terminal is used to refer to a life expectancy of less than six months. Quite a few people will live beyond that, possibly by a year. If he needed to claim PIP (and possibly if he needs hospice involvement) he would need the doctor to declare his case as terminal. I can understand a doctor not just brandishing the word terminal around in a consultation, however I suspect that if you needed the case declared as terminal, in order to access appropriate services, the doctor would sign the appropriate form.

I presume pain killers would be the best improvement to his quality of life, though you have posted previously he is reluctant to take them.

Dave

User

Posted 20 Jun 2025 at 22:54

Originally Posted by: Online Community Member

They will continue with the HY even though it’s not really working, and they will continue to monitor his PSA.

The hormone therapy will still be suppressing the cancer cells it always has. The problem is that some newer mutation cells have cropped up too for which the HT doesn't work.

User

Posted 21 Jun 2025 at 11:11

The sad thing is that John is falling between stools. The oncology team is doing what it can to treat his advanced cancer but it looks like they don't have the ability or capacity to admit him to a ward to help him with the pain, eating and basic care etc. It's awful that things have got to this stage, it's partly the fragmented health / care system but also looks like family issues too, based on your earlier posts..

The dexa steroid is usually prescribed at this stage as it helps with energy levels and appetite.

It's such a kind thing you've done, stepping in to help John, and it's very difficult and frustrating trying to get him the help he needs. Sending best wishes to both of you.

Craig

User

Posted 21 Jun 2025 at 12:06

Hi Dave,

Thanks again

I was thinking that he was terminal, but then thought, how could he be with only it being on his spine in between his shoulder blades?
I went in this morning to see him and he was ‘on one’ about the steroid. He has decided he’s not taking it. He won’t take any tablets. The only one he’ll take is for his bipolar and after a lot of persuasion he will take a 2.5 blood pressure pill, be needs a higher dose but flat out refuses.

I can’t force him to take the steroid Dexamethasone, but would it be better or worse than taking nothing? Who knows how is body will react. If he does take it I’ll be watching for change in his personality.

He has always had a foul temper. With me he’s angelic, but I’m noticing now more aggression to others. He’s just kicked off in a cafe and I am forever apologising on his behalf.

They will now continue to monitor his PSA and see how it goes. His voice has changed, it’s like he’s got a chest cold but he hasn’t.

Thanks again. I wish you all great health.
Julie

User

Posted 21 Jun 2025 at 12:18

Hi Craig,

Thanks. John is his own worse enemy. When we go to the doctors, or to see a nurse, he is nasty to them. Do the medical teams are not really interested in him. I can see how they don’t give a hoot. I do tell him to be nice when we go in but it falls on deaf ears.
I know when I’m older I’ll do my hardest to be a nice old lady 😂

He’s now adamant he will not take the Dexa steroid. He just tried to eat a doughnut in a cafe and because he couldn’t eat it, he kicked off with the people next to us because they had a dog. He did that as an excuse to leave the cafe and the food.
I don’t know anyone who’s taken the Dexa, and can’t find information on here, but I really don’t think he’ll take it.
I hope you’re doing great. Huge thanks.

Julie

User

Posted 21 Jun 2025 at 12:42

Hi Andy,

Thanks. Sadly after stopping the Bicalutamide there wasn’t a drop in PSA.

I know he’s terminal. I see the deterioration in him. He’s bones and no more. He’s a stubborn man, he seems to think I can look after him on my own. I think I’ll be okay until the time comes when he’s too poorly to argue with me about getting more help in.
The guy yesterday didn’t say out loud to John that tune was precious, but I kind of got the gist. John left thinking he has 5 years ahead of him. He says today that he’s happy with 5 more years.

I hope things are good with you?
Julie

User

Posted 21 Jun 2025 at 13:22

One of my neighbours has chronic pain, occasionally she 'goes off on one', but I think it is the pain which is causing that personality trait.

Dave

User

Posted 21 Jun 2025 at 14:26

Hi Dave,

I'm a really chilled person, I just let him rant then I appointment his behalf when he’s walking away. I think from what people are saying he’s always been a meanie. He appreciates me, so he’s an angel to me. So I think it’s not really a change in behaviour.

We went on the bus yesterday to Aberdeen hospital because I hate driving in Aberdeen. Anyway, he sat by a lady on the front seat and I sat by a mature gentleman. John turned round and ordered me to sit behind him because he hates me talking to any male. He is very rude to any male who talks to me. I refused his request and chatted away to the gentleman. John sat side on and scowled at him, he was exhausted but he would not take a nap. The gentleman was none the wiser, but I knew what he was doing and I wasn’t letting him get away with it.
I go late afternoon to him to check he’s okay. I also pop on each morning apart from Sundays.

Julie

User

Posted 22 Jun 2025 at 01:56

Barry

User

Posted 22 Jun 2025 at 09:24

Hi Barry,

if he was t a dying man with zero support I’d have walked away. I can’t now because I know he’d be in a mess. He can be a very nice man but I think he’s got a very jealous side, no, I know he has a very jealous side but I kerb it. My friends think I’m a saint for doing helping him. I also reduce animals, so I’m just a softie, but in saying that I’m not someone to be walked over.

Yesterday he only had one of his milk drinks that the doctors give him. He’s off coffee and his fizzy Fanta intake seemed less. His lips have all dry cuts on them.

I wouldn’t have thought he’d beat end stage with the cancer only being in one point of the spine. The PSA is going up but it’s only spread as far as we could see to the spine. Does the increasing PSA cause lack of appetite? He has a pelvic scan and one where he had an injection in his arm. He was told he could y have a certain scan due to his bad kidneys do if he’d been able what would that scan be? And what of his insides would it show. Because he seems very sick for what-his current situation is.

Day of chill for me today.

Thanks.

Julie

User

Posted 22 Jun 2025 at 13:03

User

Posted 22 Jun 2025 at 13:28

Hi Craig,

Hope you’re having a nice Sunday.

I get you.
He did have a scan done with ab injection of something. To me, there’s more going on than just the tumour in the spine between the shoulder blades. He really has no Will to eat.
I feel the oncologist knew more than he said. I’m preparing myself for him becoming weaker and needing more help than I can give. I know I’ll be needing to chat with his doctor. I’m now down on his records to be able to chat with them so I’ll do that so I can prepare myself ready to help him.
Thanks.

Julie

Edited by member 22 Jun 2025 at 20:19 | Reason: Not specified

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