GBM IV, Duke University Studies, & Insurance

visadoctor77

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

 

 

mccindy

expense?

I am a bit concerned that you mention needing to cover the cost of the study.  Typically clinical trials that take in patients have the costs covered for you.  YOu should not have to pay anything for the trial.  that being said, if this is some new experimental treatment, remember that you are probably paying for something that has not been extensively tested and may not be approved for use.

iso72

mccindy said:

expense?

I am a bit concerned that you mention needing to cover the cost of the study.  Typically clinical trials that take in patients have the costs covered for you.  YOu should not have to pay anything for the trial.  that being said, if this is some new experimental treatment, remember that you are probably paying for something that has not been extensively tested and may not be approved for use.

http://www.tocagen.com/

http://www.tocagen.com/

melevy

Paying for trials

You have to pay for the trial? Are you sure you're at Duke and not the Burzynski "Death" clinic? The organization running the trial should cover the cost.

Kees van Beelen

David 
Have you contacted the

David 

Have you contacted the Neurological Institute at Columbia Presbyterian?  

miggylynn

polio

just wondering if you were eligible for the polio virus and whether or not you got it.