I am a 29 year survivor of a clival chordoma. I was first diagnosed in September of 1983. We found Mass General / Harvard Cyclotron by luck.
In 1983 nobody had any idea what a chordoma was let alone any medical protocols. October 17, 2021 I had a transphenodial biopsy done at Mass General and then had 7000 rads of experimental proton bean radiation therapy at the Harvard Cyclotron in Cambridge.
Over the 29 years I have terrible headaches every day, double vision, tinnitus and lately pituitary failure. I have also worked every day, play golf (not great) and have a great family. We found out that my wife was pregnant with our first child the first week of proton therapy.
I want everyone to know that we do not have an expiration date just because we have a brain tumor. I was given less than a year to live; it is now 29 years later!
Good luck to everyone. My thoughts and prayers are with each of you and your families.