Glioblastoma Multiforme (GBM) Brain Tumor Treatment History

June 2000
I started having pain in my left temple, I was 33 years old. An MRI showed a cluster of blood in the brain.

June 27, 2000
Brain surgery at OHSU in Portland Oregon finds an acorn sized Grade 4 Glioblastoma Multiforme (GBM) surrounded by an Arterial Veinal Malformation (AVM) in the left temporal lobe. All seen GBM and AVM where removed. Karnofsky Score 90.

August 2000
Conformal radiation clinical trial at UCSF Ca. called H-boc, where they injected me with cow hemoglobin and gave me high oxygen right before the radiation hypothetically to reduce hypoxia and increase the radiation ability.

September 2000
Allergic reaction to the H-boc – finished regular conformal radiation at home in Medford, Or.

Sept. 2000 – June 2004
MRIs every 3 months – each looked nice and clear

August 2004
1st GBM recurrence. “Awake” brain surgery at UCSF with Dr. Berger, removed the grape sized GBM from the edge of the tumor cavity in my left temporal lobe. Did the awake surgery to reduce the risk of loosing language. Karnofsky Score 90.

September 2004
Temodar 330mg on the 5/23 schedule – I got my MRIs every two months at UCSF and saw the neuron-oncologist Dr. Butowski.

November 2005
Stopped taking the Temodar, my blood counts were getting lower and I wanted a break.

February 2007
2nd GBM recurrence. Had the WADA test before surgery to see if I was left or right brain dominated. I am left handed, and there was a small chance I was right brain dominated. If so, my whole left temporal lobe could have been completely removed without taking away my language. But the test resulted showed that I was left brain dominated like most people. So I went into “Awake” brain surgery at UCSF with Dr. Berger again, and he fully removed the pea sized GBM and a “buffer” around it the size of a golf ball trying to get any hidden cancer cells. Again, the tumor was located on the edge of the tumor cavity in my left temporal lobe. Karnofsky Score 90.

March 2007
Back on Temodar 330mg on the 5/23 schedule – I got my MRIs every two months at UCSF and saw the neuron-oncologist Dr. Butowski.

March 2009
3rd GBM recurrence. Brain surgery at UCSF with Dr. Berger to remove the approx. 4mm tumor in the meninge located over the tumor cavity. All seen tumor was removed. Pathology confirmed it was the GBM back. The genetic test came back that my GBM was not the type to respond well to Temodar. Dr. Butowski recommended that we "keep an eye on it", with MRIs every two months. No treatments.

February 2011
Still alive and loving life! If the MRI looks good in May, 2011 I get to wait 3 months between MRIs. Awesome! Still on no western medical treatments.