Standard of Care

Just after diagnosis you’ll begin making arrangements for radiation, the standard of care proven to provide improved survival. You may wonder whether proton radiation would be more beneficial than photon radiation or if doing radiation at a center of excellence would produce better results. The consensus by research is no. The entire pons, or the area of the brainstem affected by DMG, will be radiated 30 rounds (5 days for 6 weeks) typically with 54-58 gy. Because it is important to reach cells which are diffused throughout the region, focused proton radiation has not yielded better results. However, research shows 29 gy is just as effective as 54 gy. Before making the decision to use 29 gy, make sure the clinical trial you wish to enter will deem your loved one eligible for the trial if your loved one does the lesser amount or radiation.

There are clinical trials open with radiation sensitizers being explored. Scientists are also exploring hypofractionated radiation. This includes delivering smaller daily radiation fractions over a short course of several days to provide healthy tissues with an opportunity to undergo repair for radiation-induced DNA damage, while still eradicating the tumor. Time will tell whether these alternatives will result in additional impact or better quality of life. Find out whether deviating from the standard of care schedule of radiation will allow your loved one to enter desired clinical trials.

Researchers continue to consider what impact radiation may have longer term on the tumor. In the future, patients may be allowed by the FDA to enter clinical trials without undergoing radiation. For now, radiation offers an estimated period of three months where less symptoms may be felt and patients may begin clinical trials to postpone or eliminate tumor progression. Generally, your loved one will be discouraged from re-irradiating for 4 to 6 months. Visit with your doctor and seek a second opinion from a tumor board should your loved one experience progression of the tumor (growth of 25%) early after radiation.

Radiation to the brainstem commonly causes fatigue, nausea and some brain fog or mild cognitive impairment for up to three months after completion. This will pass. Episodes of vomiting or severe headaches should be taken seriously. Consult your doctor to confirm whether hydrocephalus is occuring which will require medical attention.