Introducing myself

I was diagnosed with advanced non-small cell lung cancer (NSCLC) in May 2011. After two chemotherapy regimes and two radiation protocols, my cancer became metastatic. I used information obtained in online forums to get my tumor tissue tested for newer molecular markers and find a precision medicine clinical trial (I’m ROS1+), and have had No Evidence of Disease since January 2013. You can read the longer version of my lung cancer story on my GrayConnections.net blog here: grayconnections.net/2014/11...

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  • Welcome to the community, Janet!

    We are so glad you are here and can't wait for your participation in the Ask Me Anything about precision medicine on May 4!

  • Thanks, Travis! Looking forward to the Precision Medicine AMA on May 4.

  • Hey Squanch! Happy to see you here. Looking forward to that May 4 AMA program.

  • Hey Denzie--good to see you here! I actually created an account here as Squanch, but figured by now I might as well use my name.

  • Wonderful news, good for you for taking charge of your journey and now are cancer free! congratulations!

  • Thanks frisk. I'm not bold enough to say I'm cancer free, since I can't know if any tumor cells are still hiding somewhere in my body. I'll gladly claim NED (No Evidence of Disease) though!

  • Hey Janet - Great to see you here. I'm looking forward to the AMA.

    Anita

  • Hi Anita. Nice to see a familiar face!

  • Hi Janet, welcome! I am very excited about the AMA event. I will be at the ONS conference in Denver at the time, but will try my best to sneak away and get on a computer sometime during the AMA. I was deeply touched by your story on your blog. Like so many other folks here, you have persevered even as the roller coaster ripped around another finger-gripping curve. We are all so glad you are here to tell your story. Bless you!

  • Thank you, Peggy. I'm looking forward to the AMA event!

  • Janet you are the poster woman for courage and persistence. So happy you joined us. This journey certainly has its ups and downs and you've had them all. Congratulations on being cancer free for 3 years. I hope that continues for many years.

    Jean

  • Thanks jeanE41! I'm hoping to dance with NED for many years to come. Good luck with your treatment as well.

  • Hi Janet -- I know yout name from the Lung Cancer Group on Inspire -- Great to see you hear - You're always provided us with a wealth of information!! Thanks for all you do!!

    Lisa

  • Thanks! Hope I can be helpful to this group.

  • Hi Janet,

    I heard about you from my oncologist at SCCA in seattle. I had surgery and chemo, and 3 years of NED finally it came back. Now they just found out from FoundationOne that I have CD74-Ros1 fusion from my previous tissue taken 3 years ago. I will start the clinical trial next week with Entrectinib, instead of the FDA-approved Critzotinib. I hope I choose the right path. I would like to hear your comment. Thanks

  • Hi battambang100,

    I know ROS1-positive lung cancer patients on the entrectinib trial who are doing well. My Denver oncologist Dr. Camidge tells me the drug is chemically similar to crizotinib, but has the added benefit of being able to get into the brain. Seems like a good choice for your first ROS1 inhibitor. I hope it works well for you!

    Janet

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