Indoximod
One sentence summary: we’re enrolled in a clinical trial and Juliette has her third brain surgery scheduled for November 11.
Juliette’s MRI on 9/25 showed continued tumor growth, indicating that our novel treatment was not working.
While bad news weighs heavy, there’s no opportunity to linger on it. We saw the radiology report while Juliette was still sleeping off the anesthesia and we began reviewing our (diminishing) list of options before she even woke up. In the days following the scan we communicated with our oncologist, our neurosurgeon, multiple principal investigators of clinical trials, and multiple oncologists who have robust experience treating kids with ependymoma.
Substantial consideration led us to select the Indoximod clinical trial as our next step. First, it’s the only Phase 2 trial available to ependymoma patients; this means that they’ve already established dosage safety and they are now focused on measuring effectiveness of the therapy. Second, it’s all oral administration which should mean fewer trips to the hospital for Juliette and fewer pokes. Finally, it is uniquely designed to offer a lot of flexibility to patients; we can resect tumors and/or reirradiate while on the trial.
Now, the downsides and risks. Enrollment in the trial requires monthly trips to Augusta, GA to obtain Indoximod refills for as long as the treatment is working. And while pills are better than infusions in a lot of ways, persuading a five-year-old to swallow pills every day can be tough; especially when it’s A LOT of pills. During the first five days of the cycle Juliette had to swallow eight pills each day.
There are a handful of patients who have experienced years of stability on the drug, but the majority of patients eventually saw the treatment stop working or not work at all. In the world of oncology Indoximod is generally considered exciting since the median overall survival for relapsed ependymoma was measured at 34 months. “Overall survival” means what you think it means. It’s hard to be excited about that as a parent.
About ten days after our bad news MRI we booked our airfare, rental car, and lodging in Georgia. Trial registration was in the morning on 10/13 and per trial protocol we would not be able to receive the therapy until 10/15, so we rented a house for four nights with the help of a good friend in the cancer community. We told the kids we were getting on an airplane to go on a short vacation and they couldn’t have been more excited. The kids had a blast swimming, playing mini golf, and and enjoying unlimited iPad time on the plane.
We are most of the way through cycle 1 and Juliette is tolerating treatment very well. She has bloodwork to measure her platelets this week since a side effect of the current treatment is low platelets. This will be used to calibrate her cycle 2 dosing and also inform the neurosurgery team if they should prepare a blood transfusion.
Juliette will undergo her third brain surgery on November 11 to resect the tumor, and shortly after we will fly down to Georgia to initiate cycle 2 of Indoximod.
