I guess this a place none of us want to be.
I’m sat in my garden crying trying to process recent information of my dad having a terminal prognosis of adeinocarcinoma egfr exon 19 deletion.
It first started a couple of years ago and he was the first UK person on a global Astra Zenica trial. He was an absolute trouper and managed chemo and a partial lobectomy well. He was on osimertinib and we’ve had an amazing couple of years going on holidays and my dad playing bowls that he loves. Just perfect.
Until the cancer returned and spread to nodes in his pleura. By Wednesday we need to decide if he wants to go on a clinical trial with Dato-DXd or just gave chemo. So much to get my head around and it has been made clear we can get treatment but it’s palliative care now.
There is so much going on and I realise how many people are fighting their own battles, or supporting loved ones going through this.
In summary I think it boils down to 3 questions:
1. Has anyone got experience of Dato-DXd? Am keen to hear as it feels a risk v reward time and I don’t want my dad to unduly suffer
2. How do you help someone best deal with a terminal prognosis and get best quality of life?
3. How on earth do people cope with all this anxiety, overthinking and just feeling overwhelmed by the future? I’m questioning everything I’ve planned, whether I need to give up my job, what the timeline looks like (it’s likely 6-12 months unless my dad responds well). Does anyone else feel guilty, worried, lost in how to best navigate thus uncertainty?
Thanks to anyone who reads this. I know so many are having a tough time. I hope by sharing experiences we can support each other and, in turn, our loved ones.
Hi
here as I’ve recently been diagnosed with LC.
Twelve years ago I lost my Dad to lung cancer - stage 4 when found, Christmas got in the way of initial treatment, initially given 12-18 months he lasted 24 months. He underwent two trials
1) 50% on placebo 50% on real drug - We were only allowed to find out after he died but never did as the nurse asked us to question whether it would actually help knowing - We never pursued and with hindsight I think I’m glad we didn’t as may have felt disappointed if it was placebo. But my Dad was more than happy to be on a trial 1) it may have given him more chance and 2) if he could help others then he wanted to.
second trial he was unfortunately pulled off of on the start date, he started coughing up lots of blood on the morning it was due to start and they couldn’t sign him off as fit enough - he asked me not to tell them but I couldn’t risk it causing more harm 
Im still pending full diagnosis but is tentatively T4N0M0 hopeful they can operate. If I was ever offered a trial I’d bite their hands off for the exact reasons my Dad chose them, if it doesn’t help me at least it might help someone in the future.
speak to your employer - can they offer flexible working/ reduced hours for a period
Try to stay positive - the psychological impact of a diagnosis is absolutely awful for all involved, enjoy every day
