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 :(.
So after the seizure was behind us, we continued to research options. I really want to avoid going on Avastin, primarily because it can exclude you from future clinical trials. After doing some research, it seemed like there were 2 trials that I could qualify for which are relatively promising. One is the Tocagen Trial at University of California, San Francisco and the other was Duke Polio Virus trial. I consulted with Dr. Prados at UCSF and I did qualify for the trial because the tumor was relatively easy to get at and small enough. I then consulted with Dr. Desjardins at Duke and also qualified for Polio Virus trial. Given that Duke was closer and just logistically would work better for us, I signed up to enter the Polio virus trial at Duke. The only problem was the FDA was concerned about somebody actually getting Polio from the vaccine, so they were only able to enroll one patient once every 3 months. Well when I went in, they had just received approval to enroll a patient every 2 weeks, but there was somebody else in front of me, so it would be early March, 2014 before I could get in. Based on the previous MRI’s it appeared to be growing slowly, so we decided to wait.
One of the criteria for entering the Polio virus trial is they do an MRI right before surgery to make sure the tumor hasn’t gotten too big. Well the person that was in front of me, failed that MRI check so I was moved up. Unfortunately, I also failed that final MRI as my tumor had gotten too big in the past month and half. So we decided to just cut the tumor out again. The surgery was done by the famous Dr. Friedman at Duke, and everyone tells me he did a great job.
Below are some images from the MRI’s leading up to the surgery, which show the tumor growth. Once again, I hope I’m posting the correct images, but even if I’m not it shows how quickly the tumor grew over the course of a couple months.
So as you can see in the above image, it spread pretty quickly between early January and mid February. From the image you can also tell there is a lot of swelling in the brain. You can see how the folds (the black creases along the border) are almost gone in February. Leading up to the surgery I began having headaches, and my balance was a little off…when I walked I would often times stray off to the right. Once this happened we decided to just have the surgery and figure out what to do next after the surgery.
Here is an MRI image from immediately after the surgery.
So all of the white matter is pretty much gone. That big black spot is apparently blood in the hole where the tumor was removed. From what I’m told the surgery was very good.
When you think about brain surgery, you probably think it’s going to take a long time to recover, and in most cases it probably does. I had surgery on Thursday afternoon, and was discharged from the hospital on Friday morning…my wife spent longer in the hospital after having a baby! It’s kind of crazy when you think about it. We had to spend the next couple days up at a hotel near Duke, and returned home on Sunday, February 23, 2014.
When we got back home I met with my local oncologist, Dr. Sumrall. My sodium levels were low, so she had me restrict my fluid intake and keep track of what I ate and drank for a couple days. I had to measure how much water I took in, and how much came out. So basically for 2 days I couldn’t really drink any water, I got all my water from food. Measuring the in was pretty easy, but the out required I urinate in a toilet hat and record the amounts each time. Fortunately after a few days, the levels were back to normal so I could resume my normal diet. I think I lost 15 lbs over the period of a few days while on this diet, but I’m slowly gaining the weight back as I am already pretty thin.
So that pretty much gets us caught up on what has been going on over the past couple months. Which brings us to this past week. On Thursday we returned to Duke for a post surgery followup. First was an MRI, followed by a return visit to Dr. Desjardins, to come up with a plan going forward. The MRI apparently showed a “speck” of tumor, which isn’t really what we had wanted, but I guess the bright side is, it made the decision of what to do next easier.
What we decided to do was enter a trial that just opened at Duke.
While it does say that Bevacizumab (Avastin, which I want to avoid) will be used, apparently in this trial they will only be testing Nivolumab and Ipilimumab (Yervoy) in this trial. So I will be randomized into one of the two arms, either receiving Nivolumab (let’s just call this arm N) alone or Nivolumab and Ipilimumab (let’s call this arm N+I). It seems like the ideal scenario would be to get into the N+I arm, but we’ll see how it works out. There is no placebo in this trial, so I’ll be getting the real drugs. There is also no end date, which would seem to indicate that you would stay on the drug(s) as long as your body can tolerate them. At a very, very high level these drugs try and activate your immune system to kill the cancer cells. The negative is the potential for some serious side effects, but it sounds like if caught early they can be managed.
I’m not actually in the trial yet, I had to have some blood tests run on Thursday, but based on results from earlier in the week I don’t think I should have any problem qualifying (knocking on wood right now). Depending on which arm of the trial I get into we’ll either have to travel to Duke every 2 (N arm) or 3 weeks(N+I arm) to get the drug(s) via an IV infusion. The N arm takes about 1 hour and the N+I arm takes about 2 and half hours. Once I am (hopefully) accepted into the trial I will post an update, let everyone know what arm I am in and when I’m going to get started. The other scary thing is that I will be the first person enrolled in this trial, so who knows what to expect. These 2 drugs have been tested in other patients with other forms of cancer, so they are considered “safe” for humans. We only had to sign off on 15 pages of potential side effects, including death 🙂
If you made it this far, thanks for reading all of that! We have had a tremendous amount of help from our family and friends. We are very fortunate to have such loving and supportive families, as well as great friends that would do anything for us (going to have to do another blog post on that later). I consider myself to be pretty lucky to be alive after almost 2 years battling this disease…and to be doing as well as I am…really no noticeable deficits, just a big scar across my head, which few people can see because I’m so tall :).
We’ve got another busy week this week with appointments and hopefully more information about the trial. I’ll make sure to keep everyone updated. For now though I leave you with a pictures of me holding a passed out Caroline at dinner and a picture of my wife and I before surgery.