Hurry up...and wait

Over the past week, most of my time has been spent trying in so many ways to figure out what my final treatment plan will be. And I am a TERRIBLE planner. I've been gathering opinions from my oncologists and surgeons at Kaiser, UCSF, Cedars-Sinai, and now, hopefully UCLA. With each conversation I do feel like I'm one step closer to where I want to be, but I'm hoping that where I want to be isn't trying to slip away.

Here's the general layout of how things have gone. The initial discussions with my neurooncologist at Kaiser revolved around the remaining standard treatment, which would involve either surgery or radiosurgery, followed with Avastin and some other form of chemo. However, he did offer a 2nd opinion from the UCSF group to see if there are any interesting clinical trials that might serve a better purpose. One trial he suggested was called Toca-511, named after the company Tocagen. This trial is a Phase I trial with very little evidence in humans, but animal testing has shown marked improvements. The other trial that is buzzing in every glioblastomite's ear is the vaccine trial that UCSF is currently running. This trial requires a certain size tumor that is resectable so that enough vaccine can be developed from the extracted cells.

After manually carrying my medical records and images to UCSF, I was presented in front of the Tumor Board. From there I learned that (a) I would be a good candidate for the Tocagen trial, and (b) my tumor is likely too SMALL for the UCSF vaccine trial. I hate it when size really matters. It was also mentioned that the vaccine trial requires surgery at the trial site, and that in the past it has been difficult to get Kaiser to support any trials that require surgery. This was the beginning of what might by the largest concern overall. The most important opinion that I got, however, was that likely I should hold things like Avastin in my back pocket for times when I'll really need it, and instead should take advantage of clinical trials that show promise.

After that meeting, I began to research clinical trials further, and found another vaccine trial at UCLA and Cedars-Sinai. Their methods require resection of a much smaller tumor, giving me a stronger possibility of qualifying. I sent all of my medical records to those two teams along with a box of Poco Dulce chocolate (good idea Rat!)

In the meantime I had another meeting with Dr. Aghi at UCSF to talk about the Tocagen trial. He was very convincing about the possible efficacy of that trial, even though it's just started with very few results. In particular, he removed most of the major concerns regarding whether this trial will eliminate qualification for other trials in the future if needed. However, it sounded like this trial will essentially only attack the tumor that is currently active, whereas a vaccine trial can potentially attack all remaining cancer cells. One thing that was clear, UCLA was a partner on the Tocagen trial AND had a very interesting vaccine trial. I really need to talk to them to examine my best treatment options.

So where are we now? Well, UCLA has received all of my records and presented them in front of their Tumor Board. And? Drumroll please? They are mailing me the report to be received by the end of the week. Er?!? This is not the resolution I was hoping for. I did ask them directly if, while I wait for the mailman to show up, they could tell me if I might qualify for the vaccine trial. Still waiting for a reply on that one. Meanwhile, I'm hoping that should I get accepted to that trial, I will get the support I need from Kaiser, or this could be a pricey battle I'll be fighting down the line.