My name is Bärbel and I’m German. I’ve been living with lung cancer for 8 years. I was diagnosed with advanced lung cancer in stage IV from the beginning. Because I never smoked my doctors didn’t look at lung cancer for a while. When I eventually got the diagnosis my health status was really poor. My prognosis was to live just a few more months.
I seemed to be in a completely hopeless situation.
However, that was 8 years ago; I’m still alive and feeling very well. In these 8 years things have changed fundamentally for patients with advanced lung cancer. It’s quite possible now for many of us to live several years. This was nearly unthinkable only a few years ago.
I had repeated chemotherapies and repeated relapses, also a surgery, many ups and downs. Whenever I stopped treatment I had tumor progression after a few months. When the doctors in my home town gave up I still saw a remaining small chance in a targeted therapy based on the detection of my driver mutation. So I went for a comprehensive molecular diagnostic to the Cologne University Hospital. All tests known until summer 2012 were performed with a negative result. But since September 2012 I know that I have a ROS1 translocation in my tumor cells. It was a lot of luck that a targeted drug was already available.
I was the first European lung cancer patient with a ROS1 rearrangement and excellent response to crizotinib.
This changed everything for me. I’ve got my life back. It was striking that within 5 days I felt much better, within 5 weeks tumor symptoms pretty much vanished. PET/CT scans showed tumor shrinkage, and the specific metabolic activity disappeared completely. The few side effects disappeared after 3 months – with the exception of increasing liver values. That was the only serious side effect I had. We reduced the dose of the drug to solve this problem. I’ve been on crizotinib ever since.
So far there’s no sign of progression.