Oct 15, 2013 - 8:43 am
October 15, 2013
Initial discovery of GBM Grade IV brain cancer June 13th, 2010 by CAT SCAN. Initial symptoms were equlibrium imbalance. I was losing my equilibrium and my legs felt disconnnected from my body. Brain Tumor is 17mm x 19 mm in the Left lower Motor region. Ressection Surgery was scheduled for August 2, 2013 after July 1 Biopsy confirmed GMB IV. On August 1, 2013 Neuro Oncologist at Swedish Medical Center and and Tumor Board from Washington State University unanimously voted that I NOT have ressection surgery to remove 95%+ of the tumor due to the likelihood of permanently affecting my right leg (which would become limp and useless) putting me in a wheelchair.
A quality of life issue.
Wake-up feeling "Wonky" everyday... kind of a "drunk" feeling all the time. No headaches. Fingers and feet tingle all the time. Ears ring all the time.
* 2mg of Dexamethose daily.
* 1800 mg of PSK
* 10000 mcg B-12
* 10000 mg D3
Fatigue is a big issue, specially the brain fog, which sucks sinch I am a writer.
Began 7 beam radiation and 140mg Temodor 6 week treatment August 13, and ended September 24. Next MRI October 21, and starting the 5 Day monthly cycle of Higher Dose Temodar October 22.
Contacted Henry Freidman at Duke University about the new Polio Virius study. They are very exciting to take me on as a new patient. They have 21 GBM trials going on simultaneously, including the Polio Virus study. Problem. My VA benefits will not cover the estimated $50k - $100k cost of the tril.
Anybody else have experience with GBM trials and getting them financed?