GBM IV, Duke University Studies, & Insurance

Dear Friends,

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?

David S