@codym, sorry to hear you're going through this. Yes, I've had radiation to my brain a total of 5 times. The first 4 were to clean up the edges after removing the 3.2cm diameter metastatic cyst. Back then, I also started Tagrisso which I'm still on.
Four years later I had a small recurrence in that area which was stopped by one more round of radiation. Unfortunately that last round led to necrosis which has caused drop foot on the right side because all of this is above the left parietal lobe.
I wish I had more positive news, but brain tissue is rather soft. As I understand it, the radiation has caused this delayed reaction because it also destroyed blood vessels, glial cells, and other brain matter that leads to a downward cascade. You didn't say where in the CNS you're concern lies. I imagine the spine won't have these issues due to the lack of widespread soft tissue.
You might want to check with MD Anderson as they have some of the leading oncologists in EGFR+ mutations. I wish you all the best!
@flusshund As I understand it, its my whole CNS that will get radiation. The goal is to bring down the amount of cancer in my CNS and not actually get rid of it with the hope to buy me more time. The list of expected side effects is daunting. I had radiation on my brain when this all started, a spot that was causing severe headaches luckily that went OK for me. They expect energy loss, digestion issues, memory loss, hair loss, and they said it will likely effect being able to do my job. Things like math will be difficult also. My Dr said it's not something they advertise doing, but in my case might be worth it.