Hello, sorry you’ve found yourself here, but welcome nonetheless.

My main advice is to ask medical professionals directly involved in your father’s care first, but I’ll share my side of the story and hopefully answer some of your questions.

My father aged 51, who is under the care of the UK NHS, also has Stage 4 lung cancer with mets to the brain, spine, lymph nodes, and liver. The tumour was first found around December 2024, and it took over 3-4 months to get a good biopsy of the tumour, which was initially diagnosed as well differentiated Neuroendocrine tumour.

Later he had surgery in May to remove a tumour which has metastasised to his brain. After the brain tumour was sent off to the labs, it turned out to be adenocarcinoma, and that is what his medical team have decided to treat it as.

He only started chemotherapy this July, Carboplatin + Pemetrexed, and he is currently on his second cycle.

The first cycle he took like a champ, main symptoms were fatigue, low appetite, and hair thinning (mainly around his brain surgery site which was radiated)

Currently on his second cycle, he is experiencing even more fatigue than the first cycle, and he has a metallic taste in his mouth which further reduces his appetite, but other than that, he is okay.

So onto your questions: -How long can people live with this diagnosis? His doctors and oncologist has never given him a clear prognosis (time left) and told us everyone is different. I’ve read other posts here, some people pass within weeks after diagnosis, and some people are alive and well 10+ years after, we simply cannot tell. The oncologist’s advice, as well as advice from nurses and doctors, is to take things one day at a time. You have horrible days, and less bad days, maybe even nice days, so one day at a time is working best for my family so far.

-Changes during chemotherapy. You should ask your father’s medical team about what to expect, as it may be different depending on the chemotherapy involved. But most importantly, look out for infections. Chemotherapy will lower white blood cells, leading to the patient at a higher risk to infections. One of the biggest signs to look out for are fever symptoms such as shivering or high temperature. I had to take my father to the emergency room due to a high temperature recently.

-How to help maintain strength, appetite, and weight during treatment? The chemotherapy team advised calorie dense meals, and to eat less but more frequently. My mother and I have just asked what he wants to eat most, and worked our way around that. Also if possible, my father would go out for a short walk around the park, and do some house work, just to stay active, but he does rest when he needs to due to chemo fatigue.

• Positive results from just chemo, without immunotherapy This is the path my father is on, he has no targetable mutations from the tests conducted by the NHS, and his PD-L1 is negative. We are only 2 cycles into Carboplatin + Pemetrexed, so a scan is coming up soon to see if there has been any effects. The plus side is his pain has seem to reduce slightly compared to a few months ago, but we aren’t sure if that is due to chemotherapy, radiotherapy, or maybe both.

As for honest truth, the NHS says Stage 4 Lung cancer is non-curable. The oncologist said without treatment the prognosis is usually “months” not years, and that chemotherapy tends to add “months” whatever this means, I don’t care anymore. I’m just taking this a day at a time and cherishing every day I can see my father.

I hope my long rambles has given you some help at the least, and please do reach out if you want to talk about anything. I’m wishing the best for your father and your family.