New here, EGFR Exon20 inversion mutation, incurable

Hi KAH sorry I missed your post I have only just seen it. 
Welcome to the group, but so sorry to hear of your diagnoses. 

I have a different lung cancer to you, and am lucky to be stable on my treatment, but at the beginning it was very scary, and telling my family was awful. I do have children, and telling them was horrendous. The way we coped was counselling which was arranged by my Macmillan nurse. You can call the support line on 0808 808 00 00 they are available 7 days a week from 8am until 8pm. 

I find being open and honest with my family is the best way. Especially my daughters, they need to know the facts. My dad is another matter, he won’t accept my condition, and won’t talk about it at all. We lost my mum to cancer a year before my diagnoses, and he won’t accept it is now happening to me. 

There are a few people in the group who are caring for loved ones with lung cancer, hopefully someone else will come along soon and share their experience with you too x 

Hi Chelle,

Thank you for answering! I am open about it, and will be more clear about my prognosis, on a face to face basis when possible. 

My father talked about people who live with cancer for many years after I'd told him about me. In the family we agree it's best to leave it that way. He is poorly, and it's hard enough on him to know I have cancer. He doesn't talk about it either. We recently lost one of my cousins to a prostate cancer, and he took that very hard.

Macmillan are great, but my family live in a different country, and their English isn't good enough for these conversations. I'll see what counselling I can find back home. Very good advice, thank you  x

A

"Life is for living and love is for giving"

HI KAH

Hi KAH. I was diagnosed as EGFR EXON 20 a year after I had a lobectomy to remove 4cm lesion on my right lung. I am currently taking TKI, afatanib and have been for the past 15months. The disease has been stable up to now but I know there will be progression and I have been told my next line of treatment will be chemo & immunotherapy (although immunotherapy has been proven to be ineffective with this cancer). All we can do is hope another treatment will be available by that point. I am 49 years old with a lovely daughter and 2 beautiful grandchildren. I'm still working full time, live alone and to date no symptoms at all from the cancer, just side effects from the medication.  New treatments are being introduced all the time so try to stay hopeful although I understand it is difficult most of the time. 

Hi Lainey

I haven't been here for a while, sorry I've not responded. I'm still on chemo, not been on anything else, doing well, is the best I'll be according to my oncologist. So I'm planning on travelling a bit with my partner - 5 years together, none of us have children. We don't live together. I wouldn't have blamed him if he'd left! But he's wonderful and around.

The cancer "ate" my pelvis while everyone thought it was a back problem, so late diagnosis, spontaneous pelvic fracture that's made me unable to work. Can't afford to fall since it would break the pelvis and I'd be in a wheelchair the rest of my life. But I manage on crutches now, progress!

Staying positive, when chemo doesn't work I'll go to try Mobocertinib. I hope it will be more chemo for a long time, I don't get many side effects. 

I think all we can do is live life to its fullest, enjoy the days. I'm grateful to see the love I have around me, strong enough to manage this, and want to make good memories with my loved ones. 

Curious if anyone's tried Mobocertinib though. 

Lots of love to you, stay strong ️