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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.

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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

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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!

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