CarolynW Posted October 27, 2017 Share Posted October 27, 2017 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.♡♡ Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 27, 2017 Share Posted October 27, 2017 Carolyn , welcome. Glad you posted here to share your story. Very happy they tested for EGFR. It is so wonderful that you have responded so well. Ned chest x ray and shrinking . Hope on the 1st you get wonderful news with your Brain MRI too! You say you are cheerful. Laughter is good medicine. It raises wonderful healing hormones. Studies have shown that even smiling and fake laughing " hah, hah, hah." can raise these healing hormones. Please let us know your news from the results on the 1st. Donna G Quote Link to comment Share on other sites More sharing options...
CarolynW Posted October 28, 2017 Author Share Posted October 28, 2017 Thanks for the warm welcome, Donna! I most definitely will. ♡♡ Quote Link to comment Share on other sites More sharing options...
Steff Posted October 28, 2017 Share Posted October 28, 2017 Hi Carolyn, glad you have shared your story. Another member called "All Over the Place" was just asking about Afatinib as her mom will begin her treatment with it soon. I have recently heard great things about the drug and am so happy to hear it is assisting in your battle and I am doing my official goofy NED dance for you. I hope all goes well with your next MRI. Take care, Steff Quote Link to comment Share on other sites More sharing options...
CarolynW Posted October 28, 2017 Author Share Posted October 28, 2017 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! ♡♡ Steff 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted October 28, 2017 Share Posted October 28, 2017 Hi Carolyn, Here's another welcome message! I'm glad to hear the Afatinib is working for you. I'm also glad you found us. I hope you keep in touch here. Bridget O Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 28, 2017 Share Posted October 28, 2017 Welcome Carolyn, Very happy to learn your targeted therapy Afatinib is having an effect. Also happy to learn x-ray and CT are showing tumors reducing in size. Am looking forward to a good MRI report in early November. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted October 28, 2017 Share Posted October 28, 2017 Hi Carolyn. You've had quite the course of treatment. It sounds like you have a great attitude. I'm a firm believer that attitude is 95% of this battle so I'd say you are winning. Looking forward to a good report in November. LaurenH 1 Quote Link to comment Share on other sites More sharing options...
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