Dani121

Thank you everyone! I will definitely look into the Facebook group as well as the other threads. It's all a little overwhelming and it's good to know there is other people out there dealing with the same thing.

I'm a 32 year old mother of 2 who was diagnosed with stage IV NSCLC in March. Non smoker. I tested positive for the ALK mutation. I was pretty healthy other than a cough and some shortness of breath that kept being misdiagnosed as colds, pneumonia, etc. until my pcp finally sent me for a CT scan to rule out a pulmonary embolism (I had one a couple of years ago). They thought it was lymphoma at first until a biopsy came back as adenocarcinoma. A PET scan and MRI revealed a softball size tumor in my right lung, 5 tumors in my brain, multiple tumors in bones and multiple lymph nodes. I immediately was admitted to the hospital where I spent two weeks getting radiation everyday to shrink the large tumor in my lung. Once released we had to wait for the genetic testing to come back to see if I could do any of the target therapies. When it was revealed that I had the ALK mutation I started Xalkori. Not long after I underwent the Gamma Knife procedure to try to shrink the brain tumors. I have a MRI next week to check those results. The last CT scan I had showed I was responding well to the Xalkori, most of the lymph nodes have went down, the bone tumors are almost gone, and between the Xalkori and radiation the tumor in my lung is almost gone. I'm still dealing with some breathing issues due to pleural effusion and consolidation in my right lung as well as ground-glass opacity. But overall considering where I was a couple of months ago I'm doing well. Sorry for the long post, I just don't know anyone who's ever dealt with anything like this and was looking for some support. Thank you!