CarolynW

Thanks Steff... I belong to the FB group Lungevity EGFR. One of the admins from here posted about the lady and her mom, asking if Afatinib users could connect with her here (which i have done). I didn't know this group existed until today. Glad to have found it! ♡♡

Thanks for the warm welcome, Donna! I most definitely will. ♡♡

Hi everyone! I have been a survivor for close to a year now. I have NSCLC with brain mets. My LC has never produced symptoms but the brain mets sure did! A year ago i lost all touch sensation to the right side of my face, accompanied by excruciating pain that was originally diagnosed as trigeminal neuralgia. My family doc sent me to an ENT specialist who found nothing, said i needed an MRI, and there they were, brain mets and a lot of them. One was putting pressure on the trigeminal nerve root. The hunt was on for the primary and they found it in my lungs. Many small lesions. I started with 5 rounds of WBR and the day before i was to start chemo, my onc called to tell me i had the EGFR mutation (oh happy day!!) He started me on Afatinib 40 mg and i was good for the first 2 or 3 months, then WHAM hit with nasty nasty side effects. 2 wk break to let my body heal, then started again at 30mg. Im doing really well now. Chest xray is NED, CT still shows a few spots and they're much smaller. Nov 1st i go for my first brain MRI in 6 months. Im a positive cheerful person and a fierce warrior when it comes to my cancer. Learning all the ins and outs of new drugs etc.. as well as trying to learn the areas of my brain has been a bit challenging. Memory loss doesn't help with that!! I wish you ALL continued good health, and easy solutions when things arise.♡♡