It has been WAY to long since the last time I posted, and I wanted to give everyone an update on what has been going on since the last post in early January. The good news is I’m still alive :), and at this point feeling pretty much back to my old self after another surgery on February 20, 2014. There was a lot that has gone on leading up to the surgery, and then after the surgery that this blog post will go into. It’s going to be a novel of a post, so stick with me as I go through everything.
Let’s start on January 8th, which is the last time I posted. Two days after that post I had a seizure while sleeping. That was only my second seizure in almost 2 years, if you recall the first time I had a seizure, I didn’t really know what happened and nobody was around to see, but based on how I felt and how sore I was it was almost certainly a pretty big seizure. This second seizure happened while I was sleeping so I still don’t have any idea of the “signs” to be on the lookout for. The doctors almost certainly think it was just related to stress and that I was pushing myself to hard the day before, not being able to sleep and going to the gym at 5 AM. Let me just say, the gym at 5 AM is way different than at 8 PM, which is the normal time I go…. at 5 AM nobody really cares what they look like 🙂 . So while I was having my seizure, my wife called 911, and I got to take a ride in an ambulance to the emergency room. I think it took about 30 minutes before I came to my senses again and realized what was going on. This time around I think the seizure was much less severe. The first time my entire body ached the next day, this time just my calves were a little sore. My head hurt the next day, but I took some Tylenol and it cleared up. By Sunday, I still felt a little out of it, but by Monday I was completely back to normal. So unfortunately now I can’t drive for a few more months :(.
Today we met with Dr. Mark Gilbert at MD Anderson in Houston. Numerous other Doctors we have talked with speak very highly of him, some going as far to say, “Do whatever Mark says”. Mark was great, very personable, and he knew we were interested in clinical trials and which ones we were looking at. A lot of the trials they had at MD Anderson were already full, but they did have a new one opening up. It was a phase 1 trial, which my insurance wouldn’t cover, so it all but ruled it out. Also, after getting word on Friday that I had the right gene to get into the ICT-107 trial, I felt pretty confident that was the right way to go.
Overall an excellent visit. It was really nice to be able to talk to one of the foremost experts in the field and get his thoughts on the different options. I was also blown away by the magnitude of MD Anderson. It’s a huge operation!
Today I received word that I tested positive for HLA-A1 which is one of the criteria for being accepted into the ICT-107 Clinical Trial. This is very exciting news! I am still traveling to Houston on Monday to meet with MD Anderson, and unless they have something really great I don’t know about, I’ll probably seek treatment at Wake Forest.
Today I found out that I have a menthylated MGMT gene promoter status. I don’t really know what that means, but studies have shown that the Chemo I’ll be taking, temozolomide (TMZ,Temodar), is more effective if you are menthylated.
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 VirtualTrials.com. The VirtualTrials.com 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.
Today it hit me. I don’t think I realized how serious my condition was until today. After my surgery, I was already back at work on Tuesday. I’ve always worked very hard, often times putting my clients first, but today my wife made me realize I need to put myself first and devote all my energy to figuring out the best treatment option for my condition.
On March 19, 2012 I had a second MRI done. The results came back the next day. They were not what we were hoping for. The tumor had grown to 3.4 x 3.4 x 2.9 (from 2.7 x 2.5 x 2.5) in the past 3 weeks.
View the full MRI Report
Here are the key images from the MRI (click to enlarge)
We then decided to surgery on Friday March 23rd, to remove the tumor.