5 Ways Tom Marsilje’s Legacy is Making an Impact

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On November 14, 2017 beloved advocate Tom Marsilje passed away from stage IV colorectal cancer at age 45. Tom was loved by everyone who knew him, especially those in the colorectal cancer community. His passionate work in research oncology propelled him to use his expertise to explain the complicated terminology and processes of colorectal cancer research. He wanted to help as many people extend and save their lives as possible.

We were privileged to be one of the many groups who worked with Tom. We found a natural connection with him as our mutual passions for research created many opportunities to work together and collaborate.

As we mourn and reminisce about the loss of our friend, we think back on the favorite ways we worked with Tom and honor his legacy of life.

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1. Fight CRC's Clinical Trial Finder

This game-changing tool was the brainchild of Dr. Tom. Many fellow late-stage CRC patients flocked to him as he became vocal and active with his cancer diagnosis online. He wanted to help. Initially, he shared his personal Excel spreadsheet with his fellow patients, showing them how he was sifting through clinical trial options. Then, he had the vision to enhance the technology and add automation to get the tool out far and wide.

We’re grateful Tom trusted Fight CRC to house this tool. Our research advocates will continue to follow Tom’s logic and keep the curation going for the many more late-stage patients who will turn to this resource for help.

Patient Resource

Clinical Trial Finder

This Trial Finder is a one-stop place to find and learn more about high-impact research studies for CRC patients. The current data are limited to MSS (microsatellite-stable) and stage IV CRC patients. The list of trials curated here is sourced from the ClinicalTrials.gov website.

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2. Colorectal Cancer Immunotherapy Paper

When we announced in Dec. 2015 our plans to convene a group of global experts to discuss how to move forward in advancements in CRC immunotherapy, Tom probably jumped the highest. As a scientist, he understood the magnitude of what we were embarking on. He didn’t only get involved as a co-author of the paper, but he also helped explain it to other patients.

Fortunately, Tom was able to see the nearly two years of hard work come together as the paper, “Advancing Colorectal Cancer Immunotherapies” was published in the Cancer Immunology Research journal in 2017. The paper serves as a blueprint for future CRC research.

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3. Currently Incurable Scientist Blog

Tom introduced himself to our followers with a blog column we coined the “Currently Incurable Scientist.” During our first days of working together, he broke down topics like PDL-1 inhibitors, turning a tumor “hot” and “cold”, cancer vaccines, and more.

Tom helped prime patients with what to expect at annual research conferences and explained everything in plain language that nearly anyone could understand. His blogs are still available and helpful in understanding the colorectal cancer landscape.

4. Advocacy at Call-on Congress

Not only was he a research guru, but we got to watch Tom get a taste of advocacy at Fight CRC. He spoke at the 2016 Call-on Congress about the state of the science and then hit the Hill with the rest of our advocates.

We’ll never forget the joy that flowed from his smile after one of his congressional meetings where California delegates assured him they supported his asks.

Tom also received our research award on the Hill in 2016. His passion for advocacy lives on!

5. Ready. Set. Action - Featuring Dr. Tom!

Many have said he became a “cancer celebrity” and that’s not far from the truth! We’re one of many who put him in front of a camera. He so eloquently explained immunotherapy in our video to help patients, a video still being used and viewed each day.

We first met Tom because of a camera - at The Colon Club retreat where he unveiled his scar to the world. It’s been thrilling to watch his story and passion take off and truly travel around the globe.

In Memory

It’s never easy to say a final goodbye and especially to a man who brought so much positivity into the world. Our thoughts are with his family and our entire CRC community as we grieve.

In true Tom fashion, we will continue to share research news and break down the science for patients. We’re committed to keeping the Clinical Trial Finder running and available for patients.

And probably most of all, we will continue to encourage patients to find the strength and hope it takes to fight colorectal cancer.

“To Life!” as Tom would say.

3 thoughts on “5 Ways Tom Marsilje’s Legacy is Making an Impact

  1. Thank you…I have been following Tom for the past 3 months as my husband was diagnosed with Stage IV Colon Cancer three years ago August 27th. Up until 3 months ago the chemo treatments he was on kept the cancer stable. And from a doctors prospective, that is great! I am my husbands loving caretaker/advocate and have researched more topics on Colon Cancer imaginable, including Clinical Trials. It wasn’t until I came across Toms webpage and blogs that I truly connected with the colon cancer fight! My husband, like Tom has MSS tumor type vs. MSI . It isn’t until recently that I found a clinical trial for this particular tumor at a local hospital in our state. When the past treatments stopped working 3 mos back, we were directed to a treatment of Immunotherapy/Chemo combination (Cetuximab and Irinotecan) which were told may not work.The side affects alone were horrendous but we knew we needed to carry through until the next CT Scan. We were already preparing to change doctors and talk more closely about Clinical Trials as being the next option. Needless to say, the last CT Scan a few weeks back showed more cancer progressing. Toms blog, simply stated, said it all for me. Don’t waste time on treatments that have no chance of working, especially with an MSS type tumor. And strive for a Phase II trial vs. Phase I. (Apparently there are a few options for us) Tom has given us hope and is somewhat of a hero for me right now. Next week we meet with an oncologist to talk more closely on the next steps with clinical trials hoping we can help bring this type of cancer closer to a cure! Here is to “Life” ! Sincerely , Bob and Claire

    1. Hi Claire,

      Thank you for your comment. We love hearing patient stories about the legacy Tom left. The clinical trial finder is a wonderful tool and we hope that it continues to provide the best clinical trial options for patients with MSS CRC. It’s great to hear that you both are advocating for treatments with the highest potential for success and we at Fight CRC wish you and Bob the best moving forward! Please do not hesitate to reach out if you have any questions.

      Thanks!

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