I have recurrent Gliobastoma Multiforme (I think). My GBM has been sort of a shapeshifter, growing and shrinking, but mostly growing a few millimeters at a time. This time, it grew more than within the comfort zone of the Northwestern Tumor Board, so I am signed up for my 3rd (gulp) craniectomy (or craniotomy, I can never tell for sure). I could easily google the difference, but I choose ignorance. I am not sure how much Craig Alguire will be left after this surgery. After consulting with my PCP, I am only going on short term disability, but that may morph into long term disability.
I think I am having this at the University of Michigan. Duke has always been attractive, especially with their poliovirus therapy. That helped 20% of the population really well against ‘historical controls.’ That’s not the headline. The headline is that it is a “breakthrough treatment for GBM.” I consulted with my first surgeon and the love of my life (JK, but not really), Shawn Hervey-Jumper. I trust him with my brain. He had a “slight” lean toward the Tocagen Trial, another form of immunotherapy. This trial is much further along in research, and now into phase 3 trials. The poliovirus needs to go through phase 2 and then phase 3 trials to prove effectiveness. The Tocagen Trial is randomized, so I have a 50% chance of receiving placebo. If placebo is the case, we have a back-up plan of taking an EGFR inhibitor instead (again, not proven to work in GBM, but what else is?). The poliovirus trial was published as a phase 1 trial in the June 26, 2018 New England Journal of Medicine. That is the most prestigious medical journal, but a long stretch for a phase 1 trial. Oh, and thanks for all the links. Yes, I did see it ;).
If you google Tocagen, the title of the first page states, “No One Should Die of Cancer.” Keep talking, you have my attention. Totally agree with that statement. If I actually get in the treatment arm, I will let you know more about the mechanism. Otherwise, I will take an anti-EGFR inhibitor which targets a protein on the surface of my tumor cells. If I fall into the placebo arm, I will also let you know more about the mechanism.
That’s my story. That’s where I am at. Now, as requested by Meg Weller, here are some pictures of my kids.
Figure: Upper left, Connor off the blocks. Upper right, Allison and Staci posing. Middle right, Allison swimming. Lower left, Gen and Coach Jim having a moment. Lower right, Queen Elizabeth and Connor showing their Stars and Stripes gear. The Queen won the most patriotic participant.
Figure: Left, the partial gang of cousins. Middle left, the ‘littles.’ Middle right, our 17th anniversary (neither of us really like cake). Far right, Mia and Tai brought their progeny.
Figure: Upper left, Uncle Jim and Mia steering the boat. Upper right, the Queen and me. Middle right, all of the cousins. Lower photo, my work buddies.