In the game of “us” versus “today”, today won.
Dad’s oncologist, Dr. Colocci referred us to a vaccine trial at Stanford. A phase 3 clinical trial based at Stanford is a best case scenario for us, and we headed into the hospital today to begin on the enrollment process.
We went into Stanford around 9am. We met with Dr. Reena Thomas and Dr. Piia Thomas (no relation), and went over many of the same history questions that we’ve discussed with countless doctors: when did you realize something was wrong? what symptoms did you experience leading up to your prognosis? what medicine are you on? how do you feel? are you nauseous? headaches? You get the idea. We discussed a lot of the concerns about dad’s current state, such as his continued dependence on the high dose of steroid. After about two hours of this, two other people joined us in the small room to discuss dad’s possible participation in the trial.
Due to the aggressive nature of GBM, the biological treatment (chemotherapy) follows a very specific trajectory: after six weeks of chemo everyday, dad takes five days of chemo pills with three weeks off, then five pills of chemo and three weeks off. Dad is off of chemo for the next three weeks. We learned that, were dad to participate in the Stanford trial, we would have to move very, very swiftly. They told us repeatedly that we shouldn’t even get our hopes up that we will be able to participate, as they have to run tests on his pathology (the tumor) that is being stored at Stanford since dad’s surgery. Basically, we have to have everything in order (tests on biopsy, consent forms, an MRI taken immediately before the trial would begin, oh and also dad has to be down to 2mg of steroid by Monday). If one single thing doesn’t follow through, this means we cannot participate in the trial. Granted, the first step is being permitted to participate, as in all papers are in and tests run and returned in time. The second step to receiving the vaccine is that dad’s tumor presents the necessary protein / mutation (which would be determined in the pathology report). About 30% of GBM patients present this mutation.
All of this has to be determined before Wednesday. Let’s say this happens (best case, if not overly optimistic scenario). Were dad to be one of the 30%, he would then enter into the randomized sample (n=400) and would be placed into either an experimental or control group. Only 50% of these participants are injected with the vaccine.
We understood the terms and conditions, and dad went ahead and signed the consent form. Dad was handed a loaded binder of information about GBM, and we then went through the closing remarks with Dr. R Thomas. Around 12pm we headed out of the hospital. I had no idea this appointment would have gone so long. If I had, I would have brought along some fortification.
Leaving Stanford for this morning appointment felt just as treacherous and all-consuming as it was to be discharged from the hospital in mid-January. Not quite as bad, but the place really knows how to suck out all your energy.
After greeting his good friend, Clark Brannin, Dad took a nap.
It wasn’t long before I got a call from the Stanford trial coordinator, who informed me that the pathology (necessary to determine whether or not dad has the mutation) is in fact at Duke. Just like that, this rules out dad’s chances of participation in the vaccine trial at Stanford.
Reflecting on this, I realize how invested I was in this clinical trial. Staying so focused and hopeful for this “next step” functioned to delay any of the tumor’s inevitable recurrence. We’ll speak with Dr. Colocci about other options, but at the moment I feel my spirits hollowed.