Researching Treatment Options

For the past 5 days I’ve been heads down researching the options.  Here I’ll try to share some recommendations and findings.

First you should read the Brain Tumor Guide for the Newly Diagnosed from  The site contains a lot of great information.

The most important thing I took away from that guide is the importance of being organized, getting as many opinions as you can and researching all the options.  Ultimately you have to feel comfortable with the decision you are making, and I know I couldn’t feel comfortable making a decision like this without first knowing about all the different options.

For me getting into a clinical trial was very important and it was up to me to do my homework on which one was best for me.

The sites I found most helpful were:

I know seeking might seem strange, but many of the players in this space seem to be relatively small companies looking to get acquired by a large pharmaceutical company.  So you have people doing research on these companies, hoping to make money if they do get acquired.  They basically summarize the data that’s out there.  Granted you have to keep in mind that in some cases these people are trying to make money off these stocks, but I found it to be a useful site for figuring out who the upcoming players are in the space and what each one’s strength and weakness are. I used this information as a starting point for my own research.
So for the past 5 days I’ve been researching the various options, calling people to see if I qualify for their trial.  To make things even more confusing, for some of the new trials you must have the right genetics to get in.  I built spreadsheets to keep track of all the different options and at the end of it all boiled down to this simple flowchart.

My first option required I test positive for HLA-A1 or HLA-A2, so I could participate in the ICT-107 trial, which sounded like the most promising to me.   Fortunately it turned out that I did qualify for this study so the rest of the sheet didn’t have to be considered.

Second option was the Duke trial of Gliadel wafers and Avastin.  I just wasn’t sure that was right choice in my case.  It seemed very aggressive to me, which one could argue is what you want to do.  The biggest downsides to this trial seemed to be the use of the Gliadel wafers, as they could exclude you from future clinical trials.  The use of Avastin so early also raised some concerns for me.

If it was determined the Duke trial wasn’t right for me, then I was going to get tested to see if I was EGFRvIII positive, a requirement for getting into the CDX-110 trial which was supposed to be starting soon at Duke.

My final consideration was a trial with Cediranib Maleate.   This seemed like the least promising to me, as it was just combining an existing drug with the standard treatment to see if it improved results.  To me it just didn’t seem to have the break-through potential that the other trials could have.  Who knows though, maybe when the results are in, this one will have turned out to have the best results.

After spending the time on this research, and condensing it down to the flowchart, I felt I had a clear plan of action going forward.

One final option which I looked into, and feel has a lot of potential was the Novocure device.  The only reason it wasn’t in the flowchart, was because it appears to be approved for use if the tumor comes back.  My plan was to get in a trial exclusive to newly diagnosed patients, and if the tumor came back, I’d hopefully be able to have another surgery to remove it, and then I could hopefully get the Novocure device.  I really have no idea if that’s how it would work, but that was my thought process.

Here’s a good video from TEDMED 2011 about Novocure.


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