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StefanieC

Hi, new here!

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Hello,

My name is Stefanie Cole and I was diagnosed with Stage 4 NSCLC back in November 2017.  I have joined other on-line groups, but new to Lungevity.  I am 45 years old living in Goose Creek, SC with my husband and 3 children ranging in age from 18 to 7.  I am getting treatment at the same academic medical center that I worked  for(now retired disability), Medical University of South Carolina (MUSC).

My cancer journey began when 7 brain metastases were found. Prior to my diagnosis,  I had been having headaches, difficulty writing, typing and even walking.  My primary care doctor ordered a brain MRI and that's when they found 7 brain mets.  At first they thought I might have melanoma because I have so many moles, but CT confirmed a tumor in my right lower lung.  Then the bronoscopy confirmed NSCLC adenocarcinoma with mets to lymph nodes and brain. Needless to say everyone was shocked (actually, I was shocked for many months :).  I am a never smoker and hadn't had any issues with breathing or coughing.  I was quickly educated and learned that f you have lungs you can get lung cancer.  Gene testing showed that I was positive for the ROS1 gene rearrangement.  Back in early December I had Gamma Knife to zap the brain lesions and have been taking the targeted therapy med, Xalkori (Crizotinib).  I had some initial toxicity so I am on the lowest dosage of 250 mg per day. So far, good news is that my cancer is stable with shrinkage showing in my primary tumor, lymph nodes are clear, and all but 2 brain mets are gone. I am thankful that my first line treatment is a targeted medication instead of chemo and radiation.  Having cancer made me realize that every day is a blessing.  

I am looking to meeting other survivors!  

Stefanie

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Welcome, Stefanie!  Sorry to hear about the diagnosis, but great that you are doing so well!  Nice that you can get your treatment on familiar turf.  It's got to be challenging dealing with all of this when you've got young kids.  

I was lucky enough to have my cancer caught during a lung cancer screening (I was a smoker for many years, hence the screening).  Mine was staged 1b, so all I've needed is surgery (so far--hopefully that continues).

Glad you found us--there is a great group of people here, and some long-term survivors among us!

Teri

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Hello Stephanie, glad you found us.  Lung cancer is always a sad story and a lot to cope with.  So glad you are getting great care and 

from people you know and care about you.  Sounds like you are responding well to your treatment.  Are they planning anything for those 2 remaining brain mets?

Are you having any symptoms from them ?   I am sure this is also challenging for your family also.  Please keep us posted on how you are doing.  Feel free to ask 

questions also.  

Donna G

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Hi Stefanie, with 1 "f". I am Steffanie, with 2 "f's".  

I think we all can agree here that lung cancer sucks, sorry you are part of the club :(

I am happy to hear that your targeted therapy is working for you! My mom was originally diagnosed in November 2015 (what's up with November, all sorts of bad stuff happens to my family in November!). When she was diagnosed, she did not have the option for immunotherapy. So she received chemo and radiation after her lobectomy.  Now, with her recurrence, we find out that if she had been diagnosed just 18 months later, she would probably have had immunotherapy as her first line of treatment (and possibly not be in the situation she is in now).  It's amazing how fast lung cancer research is coming up with viable new treatments.

I hope you find Lungevity's forums helpful and engaging.  We are all here for you whenever you need to vent or have a question. And to also hear about your experience with Xalkori.

Take Care,

Steff (with 2 f's)

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Hi Stefanie with 1 "t", and welcome. Welcome to the club nobody wants to join. I'm glad to hear your treatment is working well. This is a good community for hope, support and information. Please stay around!

Bridget O

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Stefanie,

Welcome here.

I had precision radiation also -- CyberKnife -- but to my primary tumor in the lung. My type of lung cancer does not respond to targeted therapy and I'm glad yours does.  At our recent HOPE Summit, we had a presentation on targeted therapy including the effectiveness of treating ROS1 gene rearrangement with Xalkori (Crizotinib).  For some, this new drug is a sliver bullet.  It sounds like it is having an effect on your tumors. Perhaps your radiation oncologist is thinking of zapping the two remaining brain tumors again with precision radiation.

As others have said, recently introduced treatments and therapies have injected much needed hope into late-stage lung cancer survivors. I was diagnosed well before most of these treatments were introduced but survived nevertheless.  If I can survive, so can you.

Stay the course.

Tom

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Thanks everyone for the warm welcome!  

The two remaining brain mets are shrinking and look almost ghost like on the MRI.  They were much bigger than the other one's that I had. I am hopeful they will be gone by the next MRI in July.  

Tom, so glad you are doing well as a survivor.  I wish I didn't have stage 4 cancer, but thankful that I did have the mutation so that I can take targeted therapy meds.  It's about time that lung cancer survivors have more treatment options.  God willing, I am planning on attending the Hope Summit next year. 

Stefanie

 

 

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