Sheila Cu Posted September 2, 2020 Share Posted September 2, 2020 I was diagnosed with Stage IV NSCLC two days after Christmas of 2017. I have the NRG 1 Fusion mutation which only occurs in .2%-.3% of solid tumors. I am being treated at UC Irvine. Had VATS surgery to remove tumor on LLL but have remaining nodules on both lungs. I’m on my second clinical trial and thankful each day to be alive! Anyone else with NRG 1 and what treatment are you on? Happy to be on this site for support and information sharing. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Steff Posted September 2, 2020 Share Posted September 2, 2020 Welcome Sheila! Congrats on your nearly 3 years of survivorship! I am unfamiliar with your particular mutation. My mom just has regular 'ol NSCLC with no mutations. Having had VATS and navigating clinical trials, you will probably have some great advice for many of our fellow members who are soon to have surgery and looking into clinical trials. I hope you can find what you are looking for here. Take Care, Steff Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Lin wilki Posted September 2, 2020 Share Posted September 2, 2020 Hi Sheila! I haven’t heard of that mutation. I have HER2 amplification and have not found anyone with that mutation So I understand having a rare mutation but there is plenty of support on these forums Go ahead and post away! Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 2, 2020 Share Posted September 2, 2020 Hi Sheila, Thats a new one for me too, I have the ALK mutation. No matter, lots of great people here. Glad to hear from you! Michelle Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Sheila Cu Posted September 3, 2020 Author Share Posted September 3, 2020 Thank you everyone! Stay well and happy. 😃 Quote Link to comment Share on other sites More sharing options...
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