What to expect? Brain mets

[Sockmate123]

A family member has melanoma that has now metastasised to the Brain. She had a bleed last week as a result of the mets. What can we expect? Has anyone been through this?

I'm sorry to hear this. My experience (which may not be at all representative) is that brain mets can progress very quickly. Do they have a will and anything else needed in place?

Thanks for your reply. I think they have affairs in order from that point of view. She has 4 lesions, one apparently is huge. They haven't given a timeline but no one directly asked either. How long was it in your case do you mind me asking?

The person I was closest to died about 6 weeks after the mets were discovered, IIRC. A friend of mine also lost a parent recently to brain mets 2-3 months after diagnosis. In neither case was there a chance for much treatment - it was just palliative.

However, I really have no idea how typical this is - other people may have very different experiences. Is your family member plugged into the local care system, as well as the medical one? It can be quite complicated.

I'm very sorry. It was about 8 weeks for my family member.

My BIL had 11 weeks from diagnosis of brain mets. He did get some radiotherapy. He got home for final 5 weeks with support.

Thanks for the replies. Seems a very short time left as they feel she isn't strong enough for radiotherapy. So sorry to hear you have all gone through this. It's absolutely horrific 😢

My father lasted 9 months with similar, he had chemo and radio to buy time.
The brain mets caused a lot of personality changes then loss of capacity in the last weeks so my only advice would be to try to get affairs in order and have any last conversations asap.
so sorry you are going through this.

Thank you and I'm so sorry for your loss 😞

Is your family member receiving support / lined up to receive support from a Macmillan nurse and/or hospice?

My family member was cared for at home but had support from both, which brought them some comfort.

Make sure you access support for yourself too when you need it. If your family member receives hospice care there should also be some support for their family.

Marie Curie have some pages for people in your position:

https://www.mariecurie.org.uk/help/support/being-there

I really am so very sorry 💐

I'm sorry to hear about your family member OP. My husband died almost four weeks ago. His cancer came back in his bones initially - all down his spine, in his ribs and pelvis. This was end of October 2022. At the beginning of this year he started having numbness in his face and one of his eyes kept closing. The cancer was found at the base of his skull and in some facial nerves, but no brain mets at that point. By May he was having some issues with memory, some delusions. Over the following month or so he deteriorated, memory worse, talking nonsense a lot of the time. He was quite skeletal at this point as he had long since lost his appetite. In his final week he developed what they call "terminal agitation". Very anxious, constantly moving and restless, shouting out and swearing. I was told that his latest MRI scan showed small mets in the brain tissue, but mostly it was in the membranes around his brain.

Depending on what part of the brain the mets are in, I would expect them to affect the area(s) of the body that that area of the brain controls. It could affect their personality. I would look out for other changes. In my DH his breathing started to change in the month leading up to his death. He would take a breath in his sleep and then it was like he stopped breathing and suddenly, up to 30-40 seconds later, he'd suddenly take another breath. When awake he seemed to breath regularly.

I hope you're getting lots of support from the relevant agencies. For us, our local hospice where he received palliative care as an outpatient, were wonderful.

I'm sorry OP.

My family member in early 60s had 9 months from diagnosis to passing away. It seems to be a quick illness.

I’m very sorry to hear this OP. It is extremely difficult.
my good friend died only 2 months ago.

she died 6 weeks after they discovered brain mets from her kidney cancer.

she didn’t have any personality changes and did extremely well up until about a week before she died.

💐

I'm so sorry you and your family are going through this, and sincere condolences to all that have had to watch their loved one suffer. It's horrific. My DM had 3 brain mets, discovered when she realised she couldn't stand up. She tried and fell and ended up in a&e. She had a couple of procedures, one excising as much of the largest tumour as poss. The other was a laser focused radiotherapy. Neither worked, and she passed away 4 months after the mets had been diagnosed. What pisses me off the most is that she had a brain scan before she started treatment for her primary cancer and was told she had a couple of small lesions, but probably nothing to worry about.you asked in your OP what to expect, so I'll run through how it affected her below. If you don't want to read, I wish you all the best.

In the last few weeks before she died she was unable to walk unaided, lost the sight in her right eye, developed a slur. About a month after the laser treatment, she had a stroke, with all the usual symptoms. It left her unable to swallow solids, and there was slight personality change, she was extremely irritable, however that may have been the pain.
After the stroke we were told there was nothing more they could do, so was on palliative care. I managed to get her into a fantastic hospice who spoon fed, bathed, clothed and cared for her. In the week before she died she began to have fits that sapped the little energy she had. The decision was made to put her into a twilight sleep, where she wasn't in a coma but so heavily sedated that she may as well have been. I got to say goodbye and I love you and she passed away after 4 days.
If you've read all of that, I'm sorry you might have to witness this sort of thing too. Best of luck and take care x

Thank for such a detailed reply and this does help. I'm so sorry for your loss.

Thanks everyone for your replies, to answer some questions, not linked in with macmillan or hospice yet as brain mets only discovered on Thursday but we will be I'm sure. Waiting today to find out if radiotherapy an option.

I'm so sorry for all of you that travelled this path 😔

Just to update everyone we were told yesterday it's a matter of weeks. We are just devastated. They haven't told her yet but will on Monday. It's so hard

I'm so sorry, how awful.

You say they haven't told her but will on Monday. Does she actually want to be told?

Some people don't want to know - it's easier for them to cope and less frightening if "timescale" is left vague/open-ended - and they're allowed to make that choice about what information they receive.

I'm just wondering because you say you've already been told but they haven't, which is unusual if the person actually wants to know at all. If they don't want to know, it's not compulsory for them to be told against their wishes.

I hope you have support around you. Sending love to you all 💐

Thank you for your message. They said she has a right to know but that they will leave it open ended as you say but only say a time frame if she asks. I think they will say something along the lines that they cannot cure the cancer now at this stage and that they will be discharging her to palliative care to manage her symptoms. They told us because we asked for them to just to tell us as communication has been very poor.
Thanks for your reply, it means alot x

I'm sorry if that sounded pushy, I was just worried that you had medical professionals forcing things that maybe your family member didn't want. I'm glad they've respected what you've asked about communication. That's important.

I wasn't sure whether to post again or not as I know sometimes people just want a thread to slip down their watch list and out of sight. You and your family have been in my thoughts over the last few days and I hope you're holding up as best you can.

Thank you so much for the lovely message and for keeping us in your thoughts. She was told yesterday but not very effectively, it wasn't communicated very well so there was another conversation today and everything is in the open now. It's heartbreaking but probably best she knows. Thanks so much for your message, it means alot x

@Sockmate123how are you doing? Thinking of you 💐

Aw thank you for checking in. She was moved to a Hospice a few days ago. She is happy to be out of the hospital and has enjoyed a few treats like a little bit of ice cream and chocolate etc
Good days and bad days and she is sleeping alot which I know isn't a great sign. We are just spending as much time as we can with her. Thank you so much for the lovely message x

You're more than welcome. Your DM is in good hands, let the hospice take the strain and you can cherish the time you have with each other. Please feel free to PM me if you need to x

Thank you so much 💓

Hi @Sockmate123
I Hope you're doing ok, I just wanted you to know that I'm thinking of you and your DM. X