In 1995, I remember waiting in my wife’s car while she shopped for Christmas gifts, and I was not able to sit. Numerous visits to an orthopedic group revealed nothing. My oldest daughter, a nursing graduate but not practicing, told me to demand an MRI, the first of many since then. The MRI revealed cancer: chordoma. That was on a Friday in 1996; surgery followed that Monday. Unfortunately, when respecting my coccyx, the surgeon was not able to remove it en bloc. I then received 28 doses of photon radiation.
Fast forward three years, to 1999. A followup MRI revealed another chordoma tumor, this one in my right hemipelvis. I was then referred to MD Anderson Cancer Center. Things remained stable until 2015. My doctor there was adamant about no surgery due to the location of the tumor. Instead, proton beam therapy (PBT) was determined to be the best route going forward. I received 28 PBT treatments. Unfortunately, the tumor continued to grow — more aggressively this time.
In 2017 I started my first clinical trial, but the tumor continued to grow. I started a second clinical trial, but the side effects were so bad that I chose to leave. At that point, in 2021, it was recommended I start the upcoming trial for cetuximab; I am waiting for enrollment to open.
Meanwhile, I’m not doing well — the pain that I haven’t experienced since the 1990’s has returned with a vengeance. I take pain medication which doesn’t completely remove the pain. So my life has drastically changed since Christmas 2021 due the excruciating pain in my right hip that radiates with any weight on the right leg all the way to my ankle.
However, my wife, children, and grandchildren have been a big source of support. I’ve always been close to my wife and children, but chordoma brought us even closer. And the Chordoma Foundation has helped me understand the path my life has been on for 26 years. Knowing I am not alone is somewhat reassuring. Back in 1996 when I first heard the word chordoma, very little was known. The fact that the Chordoma Foundation now has a research lab dedicated to chordoma is very encouraging. I hope it is not too late for me — I now have two great grandchildren that I would very much like to watch grow up.
If I were to offer advice to my fellow patients, it would be to not allow this hideous disease to define you or your abilities. Do everything you possibly can and enjoy your life to the max possible.
We invite you to share your Uncommon Story in your own words, which can help others in our community feel more connected and prepared to take on whatever may lie ahead. And if you need help navigating any part of the chordoma diagnosis, treatment, or survivorship journey, contact our free Patient Navigation Service.