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Diagnosed with NSCLC on Feb 15, 2017 looking for others that have tested positive for R


lisaboom

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Hi.  My name is Lisa.  I'm 50 years old and newly diagnosed with Stage IV non small cell lung cancer.  I tested positive for ROS1 and began XALKORI treatment on March 8th.  I will redo my scans on Apr 24th at the Mayo Clinic where I will learn if the XALKORI is shrinking my tumors. I'm here to introduce myself and learn about others with my diagnosis.  

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Welcome Lisa.  Glad you found us. You just started treatment 2 days ago! 

When I was diagnosed they were not testing for those details but we do have somethings in common. 

I live here in Minnesota.  I was 50 years old when I was diagnosed with Stage 3B NSCLC.  I hope you

will also have the fact in 20 years from now that you are still alive to talk with us.

Please keep us posted.

 

Donna G

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Lisa,

And I was 53 when diagnosed with NSCLC in 2004 and after 3 years of near continuous treatment, I celebrated 13 years of survival.  Donna and I together have more than 30 years of surviving a late stage diagnosis and we were treated in the dark ages!  Your conclusion from this small piece of information?  If we can survive, so can you.

I don't need to tell you of the world class reputation of the Mayo clinic.  You didn't reveal the type of NSCLC but your positive for ROS1 strongly indicates adenocarcinoma.  The drug you are taking is a targeted therapy.  Here is information on targeted therapies that address mostly adenocarcinoma. Fortunately, Xalkori (the drug's commercial name) or Crizotinib, has been so successful in treating adenocarcinoma, it has moved to first line standard of care.  And, you are indeed receiving it.  It replaces infused chemotherapy as first line treatment.  So your second conclusion is to look forward to successful first line treatment.

However, temper your thoughts of success because lung cancer is unusually persistant.  I had 4 curative treatment failures and the fifth finally yielded a substantial period of no evidence of disease - NED.  Lung cancer recurrence is common.  Here is information that reinforces the idea that treatment is not often "one and done."

So, as things progress, you'll have many questions and this is a good place to ask.  Welcome here!

Stay the course.

Tom

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Hi, Lisa,

Welcome to LCSC. I will reach out to some of our members with ROS1 and encourage them to introduce themselves to you in this threat. This site is a great place to connect with others navigating a similar diagnosis and to learn from their experiences. In the meantime, please feel free to explore the discussion boards and join in any conversation that resonates with you.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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  • 5 weeks later...

Hi, Lisa,

Just wanted to check in and see how you're doing. Please let us know if we can help you find any information/resources specific to your diagnosis or if you'd like more information about LUNGevity's support and survivorship programs. Hope to hear from you soon!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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