GBM's Journey with Glioma

I felt fine the day before but woke up with a debilitating headache. Went to work and started vomitting from the pain and nausea. Went home and took Fenegren for nausea and pain medication prescribed by my physician. Continued for 3 days and had an MRI done. Showed a 5 centimeter mass in my front right lobe and possibly crossing over. Went to ER, checked in and scheduled surgery for next morning. Dr. came in and decided tumor was too difficult for him to remove so did biopsy. Found out it was a Glioblastoma that had to be removed. Saw two more surgeons locally the next day and all refused to remove it. Did research and found Dr. Alan Friedman at Duke University in Raleigh, NC, who was the Neurosurgeon for Senator Ted Kennedy. Flew up three days later and he said he could do the surgery. Went back the following week and he successfully removed 95%-98% of tumor.

Dr. Friedman told me this was a major surgery, however, many side effects could occur including blindness, seizures, paralyzation, and even death. He also said without surgery that death was certain and my time frame was under 6 months. The surgery was successful, however, I did have a few infections in the coming months. I was out of work for several months recuperating and needed around the clock help this whole time.

Had six weeks of Radiation starting six weeks after surgery. Went Monday through Friday for 20 minute treatments with no side effects at all.

At same time as taking Radiation, started taking Temodar for six weeks. Would take anti nausea medication and follow an hour later with 250 mg of Temodar. Did not bother me at first but felt lethargic and nauseus after a few weeks. Was glad when 6 weeks were up.

Qualified to be on a 2nd Stage Clinical Trial at Duke. Had to go the 28th of each month to Duke and recieve a shot in each upper thigh after giving 14 viles of blood every time. Was disqualified after 18 months as I had to have Cyberknife procedure to get remaining tumor out.

Four months after surgery developed infection and had to have surgery to clean out. Two months later had same problem. 6 months later had same problem. 4 months later had same problem and Surgeon had to replace front forehead plate with a fake one. Dr. Jeffrey Marcus at Duke was surgeon for this. All went well and I just finished taking Temodar, as scheduled, for one year. Currently doing well and started Avastin infusions every 3 weeks for 6 more months and have MRI's every three months. In closing I just wanted to say to be your own self advocate and do not accept no as an answer. The first surgeon told me I had 2-6 months to live and they will "keep me as comfortable as possible and try some chemo and radiation treatments." Three other local Neurosurgeons would not touch me. After doing some research we found Dr. Alan Friedman who is known and respected as the best in the world.