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 Dad seems to have withdrawn.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
Written by
Chipmonk23
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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 He’s too withdrawn.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
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.
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.
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.
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).
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
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QUERY RE: LUNG CANCER AND BRAIN METS
Lung cancer mets to eye 
