Dear friends,
I’m Sara Cox, the Chordoma Foundation’s newest team member and first Nurse Navigator. I’m so glad to be here and to have the chance to work with you. If you’re facing a difficult treatment decision, trying to find the right doctor, preparing for an appointment, or just figuring out what to do next, I’d love to help!
Since starting here, I’ve gotten a close-up view of how much is happening to improve care, treatment options, and support for people facing chordoma. I wanted to share a few things that may be useful to you:
Promising trial still enrolling
A clinical trial we’re supporting at Saint John’s Cancer Institute is testing pemetrexed plus pembrolizumab for adults with progressive chordoma. Early results are encouraging: tumors have shown response in most patients treated so far, and the study still has openings.
If travel costs are a barrier, our Clinical Trial Assistance Program can provide up to $1,000 per month toward travel-related expenses.
To discuss whether this trial could be an option for you, feel free to contact me via this brief form or talk with your doctor.
Updated treatment guidance for newly diagnosed patients
Earlier this year, more than 150 chordoma experts from around the world developed updated recommendations for treating newly diagnosed chordoma. We’ve now translated that guidance into patient-friendly language to make it easier to understand and use in conversations with your care team.
One thing that’s stood out to me
I’ve been so impressed by chordoma patients' and family members' eagerness to participate in our mission. We’d love to connect you with ways to get involved, from research and sharing your experience to helping others, fundraising, and more. We invite you to take a moment to tell us what interests you.
And if there’s ever something we can help with, I hope you’ll get in touch. I’m looking forward to getting to know you!
Warmly,
Sara
Sara Cox, RN, BSN, CNRN, Nurse Navigator