I was diagnosed with fibrosarcoma of the right hand as a child. After failed chemotherapy, I underwent a right hand amputation in 1998. Shortly after celebrating twenty years in remission and having become a registered nurse in pediatric oncology, I discovered three superficial lesions on my body. Unfortunately, in February of 2019, at the age of thirty-two, I learned of my recurrence of stage IV soft tissue sarcoma with metastatic disease located to bilateral lungs, peri-pancreas region and skin. This was further complicated by the fact I was 18 weeks pregnant with my first child.
Knowing sarcoma to be resistant to both chemotherapy and radiation therapy, my doctor immediately arranged genomic sequencing of my cancer cells to see if there were other treatment options available. The genomic test revealed neurotrophic receptor tyrosine kinase (NTRK) gene fusions. In April of 2019, I delivered my baby girl at 28 weeks in order to start therapy with precision medicine. Days after delivering my baby, I took my first dose.
It’s been just over a year now. Fighting a rare disease can feel defeating. However, I’m incredibly grateful my relapse came at a time when medicine is advancing. There is hope that this can become my chronic disease instead of a terminal illness. Connecting with others with a NTRK gene fusion provides just a little more hope that we are not in this fight alone.