New here, hi!

Hi toya87, Sorry you find yourself in this waiting game, l was diagnosed almost one year ago, with stage iv NSCLC with a prognosis of six months. I was 45 at the time and hiking 50miles a week, I was in complete shock, within 5 weeks l was in the chair,receiving immunotherapy + chemotherapy,=Carboplatin, Alimta and Keytruda, l also thought 5 weeks was to long, it turns out they put me on all this treatment without getting my full results from the lab, I had limited response to chemo/imuno, and after 5 months the oncologist said my labs were back, and l have a driver mutation EGFR , so they put me on a one pill a day treatment and after just 3 months, all cancer had shrunk by 50% amazing stuff, So don't panic if there waiting on labs, they have to check for genomic mutations, and then maybe your mother can go on target therapy first line treatment, which would be brilliant for her, so keep the head up and hold out for correct lab results, but do push them to check for any driver mutations,lm going for 6 months scan in three weeks and hope theres more shrinkage, Hang tight

Hi Ronson!

Absolutely fantastic news for you thats amazing! Fingers crossed for good news at the next scan. Thank you for replying that will give many of us so much hope xxxx 

Hi Cei Bach 

yes they are long lonely nights and if you aren’t careful dark thoughts creep

As you say morning comes lippy on for you me fixed face ready tor the next 12 hours or so....... so many emotions in an hour let alone a day

chin up 

take care

Bess

Oh thank you. Your positivity has rubbed on me... Thank you. 

hi to all 

just  read Robson’s  post if this isn’t a stupid question can anyone tell me what is  driver mutation please?

thanks in advance

Bess

Chin up too... Ronson22 has boosted me today.... All the best

Definitely both sound like stubborn but incredibly strong and brave women! Must be where we get it from :-) 

and yep totally hear ya with the jumping into the mum role - i, myself have 4 children and work full time but currently dealing with all mums appointments, meds, and I’m the one she talks to about all her worries and fears. I’m happy to be that person but it’s so so hard to hear certain things sometimes. Ive also got 4 younger siblings and two of them are really struggling with all of this, my brother has ASD and adhd and my mum is his everything, so it’s really difficult for him right now.  I just feel incredibly lucky to have such an amazing husband for support - I hope you have a really good support network for you, because it’s so needed when you are being strong for everyone else.

I’ve just spent the last month sorting her finances out as well incase the worst were to happen, and trying to get a sick note from her GP is a nightmare!!  They do it for a month at a time…like she is gonna go back to work! I find doing the practical things like this really help me not lose the plot. 

the waiting is just the worst - we had a doctor promise to call and they didn’t. Luckily my auntie is medical secretary in the hospital so she was able to talk to them and they did then call but just feeling as though you have been left is awful! Have they given you details of the lung cancer specialist nurse? They are lovely and so helpful. Try giving them a call. 

if you need anything though, even just to blub down the phone to someone who isn’t so close - please do reach out. It’s such a shitty time but I have everything crossed for your lovely mum, and pray you get done more answers soon xxxx

Hi Ronson 

thank you so much for sharing this with me! You really have lifted me just reading this! Im so so pleased you are doing well and have everything crossed you have more shrinkage! It’s a bloody horrible disease and so so unfair to all of us it affects. I have been reading a lot about targeted treatments and all the different types of drugs and there’s some amazing stuff re lung cancer treatment and people living much longer. Im really grateful they are doing all the tests and she’s had loads of scans and two bronchoscopies - it’s just hard to sit and wait! But 10th March we shall now the treatment plan so I’m praying for miracles and at the very least just some more time xx

Hi bess, A driver mutation means that your cancer might have always been, or changed/mutated to a specific type, this is all at a molecular level, mine is EGFR.+ which means there is a targeted therapy that will bind to the type of protein of each cancer cell to inhibit it from multiplying, targeted therapy doesn't bind to the healthy cells, while chemo will kill healthy cells, ive had chemo with little effect, now on tagrisso/ Osimertinib one pill a day with huge effect, A year ago I just wanted ot all to end, and today I retyped my cv and registered for an online degree, in e-(bio)Pharmaceutical chem, total change of plan, 

So to you all carers or patient, keep advocating for your loved one's, l learned not to worry about upsetting people and doctors secretary's calling every day, you must advocate for yourself if there's nobody to do it for you, 

hi Ronson

Thank you for your reply......another question if you don’t mind

where or who gives you the detailed analysis of the cancer as you obviously have 

we know where hubbys cancer is, where it is going, the size( that’s on the scan report) and the immunotherapy drug being used but that I’m afraid is it..is it a case we should know the answer before we ask the question?

or.......?

Thank you in advance

Bess