stacy0611's Journey with Brain and Spinal Cord Tumors in Adults

I had inital symptoms that my local ER felt needed a CT scan. Nothing showed. My ER doctor suggested I make an appointment with my family doctor for a follow up MRI. We discussed my symptoms possibly being MS. I had my MRI and found out about my tumor about 2 weeks later.

After the inital 4 or 5 days, I was able to see Neuro-oncology and a Neuro-surgeon. We agreed that a biopsy would be done the following morning. I woke up to a primary Gr. 2, astrocytoma, filtrative tumor that took up most of 1/4 of my brain.

I was very sure I wanted to do the most agressive treatment I could and it came down to being in a study group for low grade brain tumors. It was not guarantee I would get the drug, but I was not "risking" anything by being radomized. I would get 5 1/2 weeks of radiation and randomized to see if I would get Temador.

Was randomized into Temodar study and ended up with chemo and radiation.

Was randomized into Temodar study and ended up with chemo and radiation. 5 1/2 weeks of radiation, 5 days a week and 7 days a week of Temodar.

During Chemo - chemo brain. It has gotten worse since my treatement!

During Chemo - some fatigue, but I lived on my own, in a new city, for a month and a half while I was doing treatment. I went to appointments, radiation, took chemo.

I still have anemia 6 months after leaving chemo.

I ended up with a 103. fever, in isolation after my first 5 day cycle of Temodar (Did bulk temodar treatment with radiation and was to do 5 days on/28 days with temodar for 12 months)

Lost 1/2 a head of hair due to radiation/chemo (right side is tumor/affected)

2nd month of temodar - platelets were low.

Could not continue 3rd month of Temodar as it was too toxic. My white cells and platelets were too low.

I opted to leave chemo and any further treatment 5 months into diagnosis.