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.