My name is Merel Hennink. Together with my husband we raise our children aged 10 and 12 in Groningen. As project manager, teacher-researcher, I am working at the School of Education of the Hanze University Groningen. A wonderful job! Besides my work I enjoy sports and listen to (rock) music.
For a year I suffered from declining condition and increasing fatigue.
I thought it was due to my busy work schedule and tried to exercise even more. Unfortunately, without success. I was told in November 2014 that I have lung cancer with metastases in the lymph nodes along the windpipe and neck. Unfortunately, no cure, so we went for quality of life.
Mutation analysis showed that a ROS1 translocation (in 2012 first described in lung cancer) is responsible for the growth of the tumor. The ROS1 translocation is rare, affecting less than 1% of all people with lung cancer. A few medications, developed for other translocations, also work for ROS1 patients.
But there are almost no studies done on the ROS1, because there are not enough patients with it to be profitable for pharmaceutical research.
A week after the diagnosis, I was hospitalized because I had a liter of fluid around my heart. After that I had four chemo treatments (cisplatin and Alimta). Unfortunately Alimta pure as a maintenance did not work, the active cancer activity back. Since March 25, 2015 I have been on the crizotinib, a miracle pill. Unfortunately for me my cancer is smarter than crizotinib and I became resistant within a year. In the month of February 2016, I tried Ceritinib. Unfortunately Ceritinib only had a partial response, so now, from March 21 onwards I have started my second chemotherapy (carboplatin and Alimta) to bridge to the new medication Lorlatinib. No idea what the future will bring, when Lorlatinib will be available in the Netherlands, but I have confidence in medical science and my doctor, so I am quite relaxed.