The Pill for Hope
Recently, we told you about a young man named Jace who is in the fight of his life and was looking for a clinical trial. We are thrilled to report that through your efforts to share his story, some exciting things have happened! First of all, Jace was accepted to be part of the expanded access to the clinical trial! (More on that in a moment.) Additionally, due to the increased attention to the clinical trial, we’ve heard that several foundations stepped up to provide more funding and not only will Jace be able to take part in that trial, but so will many more kids! So on behalf of Jace and the other kids who can now enroll, we thank you for helping spread awareness!
Many of you wanted to learn more about the clinical trial, so we will endeavor to give you those details now.
As with most clinical trials, there is not a lot of information about this particular drug. ONC201 seems very promising from the little the family has learned, but getting those details is a multi-step process. Most of the information is gleaned either from very technical papers that are geared toward the research community or from patients and parents who are tough to track down.
Jace’s mom tells us that she was able to find one report to the FDA in June that says there are 4 pediatric patients taking it after radiation and before recurrence. Two of them had stable tumors, one at 53 weeks and one at 81 weeks. The information was a bit dated, and more are taking ONC201 but the reports are not yet seemingly available from the clinical trials. Beyond that, Jace’s family have relied Facebook comments from parents of other patients. Jace’s mom often messages the family to find out how the drug is working, what side effects that patient is having, and what mutations their child’s tumor had, in order to better determine if this might be a well suited trial for Jace. She further noted that sometimes anecdotal information is passed from doctor to doctor through collaborations, but among the four recognized doctors they talked with, none could tell them exactly how many patients had tried this regimen, with what mutations and/or how many continue without progression.
Still, ONC201 has provided more hope for now than any other potential treatments they have encountered, so they are optimistic about the trial. They want to share their experience so that other families will have some real data to use when they are considering this course of treatment. In fact, Dragon Master Foundation was pleased to be able to recommend Jace as a speaker at an upcoming Cancer Moonshot Symposium where patient control of data for research will be a the main topic. Patient families have not traditionally been included in these types of discussions, so it is monumental that the NCI is seeking opinions from patients on active treatment. Jace will be able to share his first-hand experiences on self-navigating the clinical trial system with limited data available. Physicians and researchers will get unprecedented insight into the patient’s perspective to guide their decisions around how new policies around data are developed. (It is unprecedented because Jace is representing the pediatric community, who are not typically able to advocate for themselves, and don’t have access to this type of meeting. It shows real vision for the NCI to take this inclusive step forward.) Dragon Master Foundation will be there with him to serve on a panel to further inform this topic from the patient and foundation perspectives.
Jace took his first dose of ONC201 on Sunday night along with some Zofran to help ward off any potential nausea. It’s extremely important that those pills stay in his system, so the Zofran is a bit of an insurance policy for that. He slept in a little the next day, but all of the pills stayed down and he was off to class by noon.
Although he is only three days into the treatment plan, things are going well so far. He has a busy class schedule, will be traveling to Washington, DC to bring awareness to pediatric cancer and is training to run the Turkey Trot on Thanksgiving with his siblings. More than ever, they are all very aware of what they have to be thankful for, and they count each of you among those blessings. Every person who has shared a post, who has lifted them in prayer, who has made a call to see what they can do — it has all added up to getting Jace this far.
As for Jace, he knows that his prognosis is not great, but he says, “Life is soo good. I’d give anything not to have to leave anytime soon.” That’s exactly what we are all praying for, too. For Jace, and for every child with a cancer diagnosis, thank you for going gold with us this September for Childhood Cancer Awareness Month.
To get more involved, go to www.dragonmasterfoundation.org or follow us on Facebook or Twitter.
