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A year after DX


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After increasing shortness of breath beginning in August 2015 I finally went to urgent care (because my PCP had no openings) on October 26, 2015.  Had a chest X-ray and was dx with pneumonia and was given antibiotics.  Antibiotics had no effect so went back a week later, another chest X-ray and labs and told to see my PCP before the end of the week.  Still couldn't get an appointment so saw the nurse practitioner who ordered another chest X-ray and gave me deep breathing exercises.  The radiologist suggested I have a CT and they found lots of stuff in my right lung, nodules in left lung and nodules in liver and spleen.  I was referred to a pulmonologist who dx me with COPD and ordered a thoracentesis for the pleural effusion I had in the right lung.  The fluid was malignant so a dx of adenocarcinoma was made from the fluid.  They also sent the fluid to Mayo for genetic testing.  It was positive for EGFR, Exon 19 deletion, so I was prescribed 40 mg. afatinib which I started taking on December 22, 2015.  This was reduced to 30 mg. in March 2016 because of the side effects I was experiencing.  The only concern we've had is my liver enzymes were elevated moderately.  I discontinued the statin drug I was taking for cholesterol.  This helped for a month and then they went back up again so I did a little research on other meds I was taking and found the NSAID I was taking for arthritis can cause liver problems so I discontinued that med and the enzymes have been in the normal range since then.  Keeping my fingers crossed.  I am being treated in a small community hospital which is very convenient but missing many of the services offered in a cancer center.  My oncologist is in town once a week. 

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Hi, Bobbie.  I also have NSCLC but didn't have any of the genetic mutations.  It sounds like you've had quite the experience with managing your meds.  How is your arthritis since you stopped your NSAID?  Although my dad doesn't have lung cancer, he has a number of other conditions that require medications; due to ongoing liver disease, balancing his meds is tough.

Hope you continue to have success with your treatment and that your side effects diminish.  

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I switched from Diclofenac (generic for Voltaren) which isn't one of the normal arthritis drugs to OTC Aleve. It's not as effective, but it's not causing liver problems. I'd hate to have to stop successful cancer treatment because my liver is unhappy. 

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