Lung with brain Mets and not treating - The Roy Castle Lu...

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Lung with brain Mets and not treating

Chipmonk23 profile image

Posted a while ago about dad being diagnosed with stage 4nsclc with Mets to brain.

There was hope of immunotherapy being given after initial radiotherapy to the brain but dad is unable to come off steroids due to brain so it has been decided that they are not going to treat him at all.

We as a family are devastated. Dad seems to have withdrawn.

We have been told to look out for significant changes and let docs know .... what changes? We are literally watching him like a hawk and panicking about everything.

He is eating well, not drinking much, sleeps more than normal, mobility is poor due to Mets, speech slower and he’s slightly forgetful now.

We have been told 3-6 months. I have a holiday booked end of aug as I have 2 young children and want to keep as normal as poss for them but not sure how fast things deteriorate - is it gradual ?

Anyone have any experience of this

17 Replies

Hi

I’m so sorry your going through this. I don’t know what to say. We are in the same boat. Immunotherapy didn’t work for dad and they took him off it when he had progression.

Now it’s spread to several places. He’s too withdrawn. Not eating and unable to walk well. Every time my phones rings I expect my mam to tell me he’s died.

I too have a holiday booked in September. And 2 small kids. I don’t know what to do.

I can’t and don’t want to go but then think I need to keep going for them and my family.

But will people think bad of me going. It’s just all such a nightmare

Chipmonk23 profile image
Chipmonk23 in reply to Jill83

Hi,

Thank you for taking the time to reply.

I am sorry to hear that you are in

The same situation as I wouldn’t wish this on anyone.

It’s awful, everyday I feel like I’m losing a little more of my dad. I don’t know what to do how to help but at the same time I’m trying to stay normal for my children.

I’m up and down like a yo-yo

Jill83 profile image
Jill83 in reply to Chipmonk23

I know. I go over he’s just sat there. I try to be cheerful but then think is that insensitive but then what’s the alternative.

I feel so bad for kids. I’m shouting all the time I’m so stressed.

It’s a death sentence and every day we are getting closer.

He’s a shell of himself.

Xxx

Chipmonk23 profile image
Chipmonk23 in reply to Jill83

Same here.

I’m making small talk but I don’t know what he’s thinking.

He adores my children but the Interaction with them has gone. I think it may be depression.

Jill83 profile image
Jill83 in reply to Chipmonk23

Exactly the same here. He gives the odd smile but the spark has gone. X

Chipmonk23 profile image
Chipmonk23 in reply to Jill83

Sending you lots of hugs

Hello Chipmunk

sorry to hear what your dad is going through and you and your family.This is what hsppened eith me.....

I had brain Mets to the brain in my fifties. I had gamma knife which didn't work for me and as I was stage 2 I had two tumours from my brain removed surgically on 2 different years apart at Addenbrookes. I was on dexemethasone as I had swelling which helped enormously but I couldn't sleep on them.

I don't know your dads situation or age and everyone is different and act different to meds.

Maybe a second opinion and ask the specialist nurse with any questions you need to know.

Best regards

Hoggy

Hi

Thank you for your reply

Sorry to hear that you have had to go through so much.

I feel like my dad has been dropped and we have no contact to speak to

Dad had trouble sleeping on the high dose of demexathone but he seems to be losing functions now they have reduced.

I hope that you are currently well?

Hi,

This happened to my mum.

I am sure everyone is very different but the deterioration for my mum was rapid.

Once it had spread to her brain she passed within a couple of weeks.

Try and keep things as normal as possible for your children.

Let them talk to him and be with him even though they may not get a response. They will thank you for it later.

As for your holiday it is a really tricky one. The one question that needs to be answered is “If he passes while you are away, what will you do?”

Have a contingency plan???

I wish no -one had to face this dilemma.

Take care of yourself as well.

Sx

I know that is what I’m thinking - I don’t want to miss anything but I don’t want to destroy the kids either

Sorry I pressed the wrong button!

I’m so sorry to hear that you have too been through this - it’s the most horrendous scenario isn’t it.

It doesn’t matter how old we are we still think that our parents will always be around

It is really really hard to deal with.

Take care primarily of yourself and your children. As an only child I found that all decisions where with me. My youngest was 18 when my mum passed. He dealt with it in an incredibly mature manner. We were with here when she passed.

I miss her everyday. I constantly talk to her. She would think I was mad if she could hear me.

I cannot explain the pain of my mums loss. I now know why she changed so much when my stepdad passed. But until you experience the passing of someone you love so very much you cannot understand.

It was actually this time last year mum was in hospital.

Unfortunately, what will be, will be.

Take care. My thoughts are with you

Sx

Hi,

As you can see from all the posts others have been in a similar situation and each dealt with it in their own ways.In relation to what significant changes to look out for they probably mean increase in symptoms,increasing drowsiness or pain or discomfort which may be relieved with medications to keep your dad comfortable.

Hopefully you have support at home from the health and social care services.If you don't already have input from the district nurse it would be a good idea to contact her/him(the GP's receptionist will be able to give the contact number).

People who are terminally ill are all different in as much as some deteriorate quicker than others depending on their current state of health.It would be good for the district nurse to assess your dad in an ongoing basis and then she/she may be able to answer some of your concerns are they arise and anticipate his ongoing needs. As a family you know doubt will need to discuss where you would like your dad to be cared for in the months ahead in order to ensure that he and those closest to him are fully supported at this difficult time.

If you would like to talk to one of the nurses please don't hesitate to call us on 0800 358 7200(Freephone).

Kind regards,

All the team at the Roy Castle Helpline

So sad for you and family - very difficult time for you. Huge hugs to you all💟

Chipmonk23 profile image
Chipmonk23 in reply to Elt79

❤️

My wife had exactly the same stage 4 L/C with brain mets.....after the initial radio for the brain we were told 6 to 12 months...but it was 13 weeks from diagnosing to losing her....just as she was trying to come off the steroids which had v bad side effects.....but every scenario is different.....my heart goes out to you and everyone effected by this vicious disease xx

So sorry to hear about your wife - is it possible I could pm you pls ?

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