Hi Laura,

Firstly welcome to Cancer Chat and I'm so sorry to hear what your dad and all of you are going through with this. I can only imagine how difficult this must be for all of you.

It is a bit of a cliche but try to take things one day at a time - or one hour if it helps. There is no doubt an awful lot to process - try not to let things consume you and instead try to focus on the present and where possible also making the most of the time you have with your dad.

Of course any questions about his care/treatment or potential expectations, do discuss these with his specialist if you can so that you have any answers you need.

And do make sure you're looking after yourself too among all this. Speak to others - friends, family - and I hope the forum can act as some small support to you too. I'm sure there will be others here who have been through or are going through something similar. Hopefully you'll receive further replies soon but if not do browse or search the forum for other discussions on here also.

Wishing you all the best,

Ben
Cancer Chat Moderator

Hi 

I am so sorry about your dads diagnosis, 

I just wanted to say my mum recent been diagnosed with stage 4, she is suppose to be starting chemo and immunotherapy next week,  she declined the drug trial offered,

which trial has your dad been offered ?

have they offered him immunotherapy? 

like you I find myself researching endlessly about lung cancer treatment/ survival stories ,

I posted quite a lot on Macmillan and I had many responses as I asked about the therapy my mum had been offered 

only thing no one got bk to me about the drug trial , 

( the trial my mum was offered is a phase 1 so there's not much online or on the forums about it, 

there was a number on the paper work but I do not kno what they are allowed to say or not,  ) 

my mum declined the trial and has gone with the safer option the immunotherapy as there are so many people on this with amazing results,

I really hope that you get to talk to the oncologist about your dads treatments and once they have a plan , you can focus on that,

I wish I could offer you more advice 

take care  and let us know how it goes xx

hi rosie

i'm so sorry to hear about your mum. cancer is cruel at the best of times but lung cancer really takes the gravy in terms of being evil.

this situation is made such much harder by my dad being a doctor himself and me and my brother being medical students- we understand so much more than the average person which often scares us more than does us good.

the trial was a phase 3 trial but he's decided not to do it as often people end up getting more sick from the trials than theyre worth. his oncologist agrees. it was a phase 3 trial part of the matrix trials. 

he has been on immunotherapy- pembrolizumab but it hasn't worked as of yet. unfortunately he had a pdl marker of 0 which is so unlucky. if i can reassure you at all, often women seem to respond better than men to immunotherapy. 

we have a plan from now and i want to have hope but it's so tough isn't it.

watching the people we love the most in the world suffer is the most pain we can imagine. i dont think ive been truly happy since the day we found out and i know my life will never be the same

he starts the new chemo on friday... we'll have to see

if i can give you any advice, take each day as it comes. i cry til the cows come home but i also tell myself 'if it's not happening today, you don't need to worry today'. all we can do is be there and be positive when they can't.

lung cancer treatment is the most rapidly developing field of cancer treatment. every day there's new things out there. one day there will be someone who is cured of stage 4 lung. it might be us or it might not. never give up

sending you and your wonderful mum all the love xxx

Hi Lauraannabelle1

ive just read your reply, I am sitting here in tears, just knowing how your feeling and how gut wrenching this feels,

im so sorry your going through this, 

my mum goes with her partner to the oncologist apt,  I give my mum lists of questions but I don't kno if they ask them,  I asked would me and my daughter be allowed near my mum once she has chemo,  I don't even know if they asked that question, 

This is the hardest thing I've experienced, like you say take each day as it comes, 

my mum declined the trial , it was Mac trail being done at the uch London, 

So her chemo and immunotherapy keytruda will start June 1st, 

my mum is only small before this now she is7.5 stone and 5ft, 

Im scared about the treatment and This awful

journey,

like you say lung cancer is evil it's cruel not like other cancers,

I'm sorry your going through this with your dad, I'm so's sorry tht the 1st lot of treatment has not worked, 

I wish I hope and I pray that our love ones will be the ones to fight it,

praying for your family and I hope that your dad will

be ok with his new plan of action,

you are in my thoughts and please let me know how your lovely dad gets on xxxxx 

lots of love xxxx

hi rosie!

you can call me laura xx

im so sorry i made you cry! i didnt mean for that. it's the most emotional journey- i flip between being angry and sad and happy and confused all at once. its so bizarre x

i go with my dad to his appts... i write almost everything down and go through it once we're home. he often doesn't take any of it in or he selectivly remembers parts. might be worth mentioning it to your mum's partner x

in terms of seeing your mum... i can't quite answer that for the oncologist but what i will say is that everyone has to make their own choices. if being there and spending time as a family will help you say all you need to say and support each other through the journey it might be worth any risk. i live at uni with mates and still socialise with everyone normally and still see my dad and there's been no issues. he still sees his mates too. just make sure everyone is vaccinated against covid and that should bring some peace of mind. i know that being together as a family is the best thing for us all x

with chemo anyway there's always a risk of infection, my dad always has a thermometer (electronic one) handy and if there's any suspicion about anything he always double checks his temp

take anything out of the ordinary seriously- don't put it off. the drugs can cause some weird side effects and it's always better to be safe than sorry. your mum will have a number she can call.

my dad had a nasty chest infection recently but he dealt with it straight away and hes all fine now- better to sort things asap.

i don't mean to scare you just a bit of advice xx

it sounds sensible what your mum decide. it sounds like she's having the same as my dad. i have to say his side effects were very minimal- only thing he had was fatigue and he seemed to feel worst at day 6 past chemo. after a couple weeks your mum will start to feel better xx

i understand why you are scared. we are a family of doctors who know more than most but we are terrified too- who wouldn't be. and it's so normal and healthy to be scared. it's human to be scared of the unknown. 

your mum sounds like a wonderfully strong lady who's got an incredible family around her. don't give up= say what you need to say, do what you need to do and don't ever leave things on a sour note xx

if you ever feel scared of want advice or some questions you know where to find me

sending you and your loved ones strength 

stay strong- it's not over until it's over, and things will get better xxx

p.s if you dont mind me asking where is your mum being treated?