New diagnosis

Hi Alin,

Welcome to our little part of the community. be assured we have all been where you are now, looks like you’ve had your tests and next week will get your treatment plan, at the moment everything is up in the air and nothing makes sense but come next week when you get your plan you will feel much better ( dont believe me I know but it’s true) you will be able to take back control and you’ll know what you will be doing. A lot of us on here are inoperable, some incurable but we are treatable, many of us have been around for a few years now. Next week you will be given the best treatment that will work for you, when you find that out many on here will be able to help you and advise you if you have any questions.
Your wife is probably in a worse state than you at the moment, hopefully next week things will be calmer and clearer for you both. There are lots of new treatments around now.

Good luck for next week, let us know what treatment you get. 
There’s always someone around if you just need a chat about anything in the meantime

Take care

Hello Alin175,

You will know more once they have established what characteristics the cancer has - you may be a candidate for targeted therapy or immunotherapy. I was diagnosed over 2 years ago as Stage IV. To date my cancer is stable, and they are making great strides regularly with treatments. Let us know what treatment your oncologist recommends

Thank you for taking time to reply, I have had my appointment moved today and they decided to put me on Osimertinib targeted therapy drug. Will probably start next week, from what the doctor said, if my body copes with the drug, the cancer should shrink.

Fingers crossed, all the best for everyone. 

Hi Alin175 I just wanted to welcome you to the group and wish you luck with your treatment. Let us know how you get on. 

I am on Osimertinib (also known as Tagrisso). After the first month the primary tumour shrank by about 50%, and has been stable since then. I have had very few side effects - occasional diahorrea or sore mouth - and continue to work (albeit from home) even though I shall be 69 in a few months time.

I've been on Osimertinib since April last year. For my body the side effects are manageable and much better than Afatanib, and a huge improvement on chemo. I'm considered stable - fingers crossed, as I have scans tomorrow. Good luck with the treatment.  

Back with updates, found out the exact staging they gave to my cancer, T4N3M1a.

Last week I was in and out of A&E 3 days in a row due to left rib cage stabbing pain, shortness of breath that got worse, pounding chest pain, throat and neck pain for which I have been prescribed oral morphine. I only tried it once and felt worse and didn't help with pain. 

I have had scans, ecg, heart ultrasound, lung angiogram, didn't come up with anything and sent home with paracetamol prescription.

Last Friday I started on Osimertinib and a 3 days course of paracetamol 1mg every 6h, stopped paracetamol last night. 

I don't know what improved things for me, but as of Sunday, especially today, I feel almost like before my cancer symptoms started. The pain on the left side of my chest still there, less prominent now, but boy, can I breathe now. 

I was in the park with my children today, I even played football with them, can't believe that my shortness of breath is gone. 

No side effects from osimertinib so far, hopefully it stays this way and keep on handling this damn cancer for a long time. 

I will come back with updates after I get the 3 cycles scan to see how it's looking in there. 

Good luck for everyone. 

That's good news. I've celebrated this month two years of progression free  treatment with no degradation to my quality of life. Long may it continue