Neurofirbomatosis 1 and Grade 4 Glioblastoma

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.

Thank you,


  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    I am very sorry to hear that someone new is now faced with glioblastoma. My sister had gmb4.You have come to the right place for suport here on this site. It was a great place to go to talk with people that are, or have been through the same thing that you are.
    Im glad that you were able to have surgery to remove the tumor.Were they able to get it all? I remember feeling so scared and lost until the treatments started. Going to radaition daily gave us a feeling that we were doing something about it. The radaition and temador will make you tired, so get rest and nap if you feel the need. Eat good healthy foods. People stay on temador for longer than a year if it seems to be working.
    Keep in touch let us know how you are doing.
    Postive thoughts are good you keep them going...
  • Jstreet
    Jstreet Member Posts: 4
    neurofibromatosis type 1 and pilocytic astrocytoma

    I’m a 31 year old male with neurofibromatosis type 1 and with what is believed to be a pilocytic astrocytoma in the pons of the brainstem. My doctors at Vanderbilt are not 100% sure on the exact diagnosis without doing a biopsy which, due to the location, is not really feasible.

    I’ve known for a few years now that I had a slow-growing cystic-like tumor or lesion in my brainstem, but it wasn’t until Dec 2012 that my doctor called it a pilocytic astrocytoma and wanted to commence treatment. I started taking Temodar 250mg on Feb 19, 2013. It’s once a day [at night] for five consecutive days. This cycle is repeated every month. The number of months is yet to be determined. Fortunately, I have not yet experienced any serious side effects from the Temodar, only mild constipation. I guess the rest [other side effects] will come with time. I’m curious to hear your experience with neurofibromatosis and Temodar.