My mum has been diagnosed with non small cell lung cancer, it's terminal. She has been offered chemotherapy to make her feel better.

[hawkins18]

She seems well at the moment and we are worried chemotherapy will make her feel worse with the side effects. I would appreciate some advice or comments with someone that has been/ going through it.

[Billculbard]

Hi there.

Sorry to hear of your situation. Best liaise with the lung cancer nurse specialist where your mum is being treated, and you will get the best possible advice. Chemo may well make her feel worse, but not necessarly. Ensure that you have Macmillan involved too, as they offer excellent support. The Roy Castle booklet "Lung Cancer - Answering your Questions" offers great support and advice for folk in your position.

Best wishes,

Bill

[hawkins18 in reply to Billculbard]

Thank you for your response, we are in contact with a Macmillan nurse, we saw the oncologist last week and have been left unsure what to do for the best. I will call the nurse tomorrow.

Kind regards

[willowtree]

Hi, I am so sorry you are going through this. It is very hard and there is no easy answer. My husband had no side effects from first two rounds of chemo and continued to play golf. The third line affected him differently. Everybody's experience is different. Do get support from Macmillian, and remember to look after yourself too.

[hawkins18 in reply to willowtree]

Thank you so much.

[Hidden]

Hi,

sorry to hear your news. I was diagnosed with stage 4 non small cell lung cancer March last year aged 49. I have come to learn that the word 'terminal' is often used as it it is not cureable, however it doesn't mean that it is not treatable. I am now 15 months post diagnosis and am doing really well and feel great as if there is nothing wrong with me.

I was tested for the EGFR genetic mutation and tested positive therefore I taken a targeted chemo, a tablet, I take it every day. There were some side effects initially but after 6 months they are now minimal to non existant.

I take it your mum was tested for the mutation too as I understand everyone in the UK is. Even if it comes back negative, there is a drug called Tarceva that is sometimes given after a round of traditional chemo and even in people who are EGFR negative it seems to work. I have a friend who's husband was negative and had chem and is now getting great results on Tarceva. Its something to ask the oncologist.

I have met (mainly on line) many people with stage 4 lung cancer since my diagnosis, many are living for several years some in excess of 5. The one thing survivors have in common is there positivity. Keeping positive and active and eating healthily seems to be the key. That way you are in the best position to fight.

wishing you and your mum well

Lyn x

[hawkins18 in reply to Hidden]

Hi Lyn,

Yes she was tested and it was negative, thank you so much for the information, we are seeing the oncologist tomorrow and I will ask about Tarceva.

Hope you keep well

Diane

[windsorwalk]

Hi,

I am so very sorry to hear your sad news, it is a very difficult thing to come to terms with, stay strong as a family unit, this will help you in the time ahead.

My husband was diagnosed with the exact same thing as your mum a year ago, all I can say is trust the doctors/lung cancer nurses they are there to help you and they have only the best advice to give, your mum will know what is best for her and her body and ultimately she will make the best choices for her.

The thing that kept me going was arming myself with as much information as I could find and learning all I could about lung cancer and the various treatments, it helped me gain some control back in a situation that was out of our control.

Please contact The Roy Castle Lung Cancer Foundation as they are wholly dedicated to lung cancer and they are so very helpful, you can order free literature and a dvd from their website that was invaluable to us at the beginning.

It is a tough road you have ahead but keep strong and make sure you talk to friends and family about how you are feeling (it helps)...

Take care x

[hawkins18]

Thank you so much, It is such a nightmare, she hadn't been unwell so has come as a complete shock. I will look at the website for all literature. Thank you again x

[hawkins18]

Hi,

I thought I might update you with my mums situation. She has decided to go ahead with chemo and it starts Monday. I'm happy she feels in control and it is what she wants, I am struggling with the thoughts of what lies ahead, but I'm determined to put that away and concentrate on the here and now!! X