Tom Marsilje is an extraordinary human being. He also happens to be on the short list of those who have made it possible for me to extend my stay on earth. Tom codeveloped ceritinib, the first second generation ALK inhibitor, which became available in clinical trial in 2011.
Ceritinib (Zykadia) was my stepping stone after coming to the end of my three year run on crizotinib (Xalkori). Without it I would have had nowhere else to go, treatment wise. My gratitude to Tom is without bounds.
What I could not have predicted is that Tom and I would eventually become friends. This happened after his own diagnosis with stage IV colon cancer. Suddenly I had something to offer my savior, in the way of initial inspiration.
However, Tom has forged his own amazing path as a patient and super advocate. The father of two young daughters, his will to live is fierce and he has deftly utilized his experience as a scientist to design his own treatment path in a way that few are able. However, he has not focused solely on his own survival, as he has shared both his experience and his knowledge in a blog, Adventures in Living Terminally Optimistically as well as a column written for the Philadelphia Enquirer. Tom’s primary passion has been to make clinical trial information available to colon cancer patients in a format that is expedient, accessible and easily understood, and with the support of Fight Colorectal Cancer and Flatiron Health he has developed an app to help late stage colorectal patients locate clinical trials.
All of this while moving from treatment to treatment, as well as devoting precious time to fatherhood. Honestly, I have no idea how he does it.
The San Diego Tribune just ran a lovely piece on my friend Tom Marsilje with an accompanying video. I was touched to see that our friendship got a mention–I am the ‘woman with stage IV cancer who has now participated in three life-extending trials.’ What is not said is that Tom made trial number two possible.
We have a pretty special bond, me and Mr. Marsilje. I am endlessly grateful, constantly in awe, but also quite mindful of the difficult path he is on as he battles his own disease. Keep him in your thoughts.