Feb 25, 2012 - 10:53 am
I'm a fairly health 37 year old female who was born with Neurofromatosis 1. On January 29, my boyfriend took me into the ER because I temporarily lost the ability to speak. I was admitted immediately because the fear was I was having a stroke. the CT Scan showd a 3x3 cm mass in the brain. Spent two nights in ICU for examination, and one night in a normal room. MRI showed a tumor of the brain under the lining. Had to operate. My operation was February 13. I recovered quickly, only spending one night in ICU and one night in a normal room, released by the third day. That Friday, we received the results: Glioblastoma.
Everything on one hand seems to be dragging on, and on the other hand, everything seems to be happening very quickly. Monday I will meet with the radiation oncologist and my orientation class for chemotherapy. My sutures will come out this coming Tuesday. I have five days of mapping for the radiation, and then "go live" the following week, March 5. Radiation will last six weeks. At the same time, I will be taking Temodar pills. Then a four week break from radiation. Week 10, MRI to determine if we got it all. And I will be taking the Temodar for a year, I believe.
I refuse to think anything other than positive results. I think my boyfriend is more concerned than I am. I won't lie, I am terrified, and I'm not really sure what effects to expect from the drugs or treatment. Is there anyone else being treated for glioblastoma (especially anyone with NF1)? My neuro-oncologist says people with NF1 show favorable results.