Although 75- 85% of patients show some improvement in their symptoms after radiation therapy, DIPGs almost always begin to grow again (called recurrence, relapse, or progression). Clinical trials have reported that the median time between radiation therapy treatment and progression is 5-8.8 months.

Patients whose tumors begin to grow again may be eligible for Pilot, Phase I, or Phase II clinical trials. These clinical trials use experimental drugs or other experimental therapeutic approaches to try to slow or stop the growth of the tumor. Unfortunately, clinical trials have not shown any significant benefit from these experimental therapies so far. However, researchers are always working to develop new potential therapies for DIPGs. By participating in clinical trials, patients and families can help researchers learn more about DIPG and perhaps help future patients.

Unfortunately, DIPGs that progress usually grow quickly and affect important parts of the brain. Clinical trials have reported that the median time from tumor progression to death is usually very short, between 1 and 4.5 months. During this time, doctors focus on controlling symptoms and helping children to feel as comfortable as possible.

Who to Contact for a Second Opinion
The International DIPG Registry web site is for educational purposes only and is not intended to offer medical advice or services. The information provided on this site is not a substitute for professional medical care or consultation and should not be used to diagnose or treat a health problem. Please talk to your health care provider if you have or suspect that you have a health problem.