Wednesday, January 12, 2011

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.


  1. This post speaks to what I was curious about your last post whether you could be in more than one trial at once. Correct me if I'm wrong but sounds like mixing and matching trials is on a very case by case basis so you not only have to choose on how favorable various trials are but also whether they permit other promising trials.

  2. It's rare that you could go on several trials at the same time. The only ones I've heard of that they would allow that on would be, for example, a trial that's entirely surgical with a trial that requires surgery. However, the other question I had was if I were to go onto a trial and it didn't work, would it exclude other trials in the future (some have requirements like not having taken certain chemo drugs, for example). For the most part, the trials I'm most interested in likely won't exclude future trials, but that is always on a case-by-case basis.

  3. OK, "tumor board" ... I'm sure there have been many, many surreal things about this journey my friend, but when you have triumphed over the tumah, you must take on the tumah boards, because that just seems a little too surreal. At least make them come up with a more creative name! Hang in there buddy! I'm thinking of you and sending good thoughts - I know you will find the best treatment to fight this next battle and win - even if you aren't a good planner

  4. I just happened upon your post and wanted to comment. My husband has a GBM and he has been doing well for 18 months. His darn tumor was inoperable which really sucked, but so far the medication he's on has worked very well. Just my opinion, but I have researched every option out there and if my husband's tumor was resectable, I would hightail it down to UCLA to get the vaccine there. It has had very, very good results and Dr. Liau is an amazing neurosurgeon. I have emailed her before and she has personally responded very quickly...I'm amazed. The following blog is from a person who received the vaccine at UCLA 4-5 years ago and is doing very well. ( If you can stand one more opinion, I'd also go to Duke University and see Dr. Henry Friedman. He has an amazingly positive outlook on GBM and says he aims to cure a GBM patient. You don't hear that too often. Good luck to you.....I think you are in good hands at UCLA, UCSF, Duke or any other large center!

  5. While I agree that you are spontaneous, I don't think that that makes you a bad planner. Weighing all your options and not making snap decisions sounds like good planning to me. But I won't think of you as a planner coz I don't want to make you feel uncomfortable, self-conscious or unspontaneous! And I'm glad that you are so smart, educated, rational and supported by such experts- makes for informed decisions.

  6. You sound like a good planner to me. I have no clue how appropriate Avastin is for your situation, but it helped put my sister's lung cancer into remission.