Clearer diagnosis and treatment plan

Pleased you now have a treatment plan which is due to start very soon.  Yes the diagnosis will be still going around in your head as it is mine and I was diagnosed in August 2019.  But what I would say is the treatment for lung cancer has come on leaps and bounds in the last couple of years and yes we might never be rid of this awful bloody thing but we can live with it and the longer we can do that the more likely another treatment can be found so we can keep on living xx

So true I was diagnosed sept 2019, 12cm inoperable tumour stage 4 & lung collapsed around it! 4 chemo cycles later, tumour 4.7cm and not gotta go back to Christies till March, you just never know!! 

Hello Annew and welcome to us

I hope your treatment goes well. Often we feel better once we have a plan and start 'doing' something about it.

I would suggest getting in touch with your local hospice or going to your GP for counselling recommendations to help through processing the information.

Hello Annew,

I had a meeting with my MP on Friday to discuss funding, particularly with regards access to what is regarded as the best treatment available for Lung Cancer that is EGFR positive. This is Tagrisso/Osimertinib that is, currently, only available as a Stage 2 treatment even though statistically it has better results that Afatanib and other TKI's. NICE are publishing findings/recommendations at the end of February and, hopefully, they will have re-considered their decision - as usual it is all about cost (Tagrisso is around the £78,000 a year cost). Luckily I have Private Health Insurance as a benefit of my job, but they only fund chemo treatment for 12 months. This means I will have to revert back to the NHS and start on a arguably less effective drug until it stops working. Only then can I apply to go onto Tagrisso

As a footnote I have had minimal side effects from my medication

John

Hi

similar funding problem with immunotherapy.  I could have Pembrolizumab for 2 years only. I can only have the more gruelling less effective chemo when the disease progresses. Where’s the logic, when all the side effects of chemo mean loads of other medications to counteract them, yet pembro had no side effects and kept me stable.x

Totally agree - have you considered speaking to your local MP? As stated I have recently spoken to mine not just about my situation, but also about cancer drug funding in general. I realise that all she will (be able to) do is send letters to the Health Secretary and NICE. She is also willing to write a letter of support if I apply for individual funding (although I'm unlikely to be successful). It's just so frustrating that we are in this position - medication is working, decent quality of life yet NICE need us to deteriorate before they will act. When our time is "limited" we want it to be good for as long as possible - not unreasonable, I think. I have used my company private health insurance for a hip replacement, a knee replacement (both due to rugby), and a cardio ablation for AF, thus literally "saving" the NHS thousands. Not used the NHS for much since I left the RAF, have never claimed any "public assistance", so feel slightly aggrieved.

Anyway, rant over, smiley face back on - we will continue to soldier on

Hi

my treatment finished 12 months ago and fortunately I’m still stable, but when it does progress I still won’t get the immunotherapy.

as for contacting my Mp it proved fruitless.  My onc went down the independent route, I wrote to NICE, Merck, dept of health, you name it I contacted it. I was also radio 5 live, radio Lancashire and in the local paper. Totally exhausted me.

But I’m still here, still fighting the disease and have way outlived my 18 month prognosis. I will (hopefully) celebrate? is that the right word? my 7 year cancerversary in March.x

Well done you, and "congrats" on the cancerversay - I will celebrate my first on Feb 1st and have got a bottle of Bolly ready for the occasion

Hello, just read your profile.  It is just the sort of story I like reading!!! So positive. I'm only 5 cycles in so I've got a way to go.  First scan showed it's keeping things stable so I just hope I react as positively as you have.. 

It does seem totally crazy not to allow you more immunotherapy if needed as it has shown to be so effective and as you say less side effects and therefore less expense in the long run.  Xx

Thanks dance in the rain.

I really hope this works for you with minimal side effects.

good luck.x