I was diagnosed with a chordoma because I had pain similar to sciatica. The tests showed that the tumor was in the sacral bone and the left pelvis. I underwent double surgery to remove the left pelvic bone and the sacral bone. After that, I started treatment with sorafenib, pembrolizumab, pemetrexed, and cisplatin without any positive results.
Currently, I am on sunitinib and looking for alternatives in phase 1 clinical trials. The disease is progressing and we have not been able to stop it yet.
It is important to express what you feel in the face of such a terrible illness. I started writing a blog explaining my experience, and it helps me get rid of everything bad that this disease generates.
I had the opportunity to speak with an Ambassador of the Chordoma Foundation. Although they were much luckier than I was because they had their disease under control, it was good to talk to him. At the moment, for me, the medicine has not been able to control my tumor, but I continue to fight.
My mantra: Do not give up, you must fight to the end. No surrender.