Yesterday my medical files were sent to UCLA (at least the writen ones - the MRI scans are somwhere between Seattle and LA on a USPS truck I imagine), and this morning I missed a call from Dr Linda Liau's office. I thought they were calling because I had yet to pay the $500 to get my records reviewed for the low grade glioma clinical trial with dendritic cell therapy, but when I finally got ahold of the department it turns out they were wanting to schedule an appointment for first thing Tuesday morning. Em, like THIS Tuesday, July 2nd. Dr Liau only holds office appointments on one day a week, so an appointment at 8:00 am this Tuesday is the soonest appointment available. Since I'm traveling from out of state, I asked for a later appointment, and was able to push it back 'til 10:00 am. The stress alone from traveling is going to be tremendous, and I haven't been sleeping well anyway - I need to rest whenever I can. Also, interestingly, they told me that they wanted to schedule me in for immediate brain surgery for either Wednesday or Thursday. I started giggling and said, "Oh my god, I'm panicking. I'm not ready!!" The nice girl responded, "Oh, no problem, no pressure! For out of town, or out of state patients, we try and schedule surgeries immediately so that they don't have to endure any extra expense or stress. But, just so you know this isn't a rush."
So, on Tuesday at 10:00 am I will sitting in Dr Linda Liau's office at UCLA, in the neurosurgery department. We will discuss the various details of the clinical trial and Danny and I will review the risks and benefits of another brain surgery.
The idea of getting dendritic cell therapy here in the United States with fresh brain tumor and no forced radiation or chemotherapy is very exciting. The surgery is scary, but I will not make my decision until I know what I'm really looking at. I need to make sure that they would review a new MRI scan to make sure that my supplements haven't shrunk Hermie. Would the brain surgery be another awake crainiotomy? An awake is preferable since my tumor is so integrated. It's creepy to be awake while they're digging around in your brain, figuring out which is tumor and which is healthy brain tissue, but theoretically, it is supposed to ensure that they won't take very much (if any - which is impossible) of the good stuff. It's a pretty big deal. If they fail they can leave me severely impared. For the surgery, would they use the same incision location? What are the possible complications? Once the surgery has completed, how many dendritic cells are in each shot? They tend to do 1 million, 5 million or 10 million according to the other clinical trials by Dr. Liau, and I want the most dendritic cells possible. How many shots and over how long of a time period would I be recieving shots? What have been the results from Dr Liau's other clinical trials, including phase I of my possible trial? When they do the brain surgery, do they debulk the entire tumor or do they only take out what they need to create the vaccine? Would I have to shave my head again? How do they handle seizures if they occur during surgery?
I'm sure Dan and I will come up with a few other questions. If you think of any, please let me know. We can't have too much information when dealing with such a serious decision.
The wonderful thing about flying down to LA is that it keeps our options open. Just because we meet with Dr. Liau does not mean that we have to enter into the clinical trial.
If I do choose to participate in the clinical trial, I will have to cover the cost of travel, the brain surgery, hospital stay, tests, MRIs, blood work, perscriptions, etc. My insurance covers a portion of those costs (obviously not travel or any possible neccessary lodging), and yes, those costs are significant, BUT the dendritic cell therapy, which is the personalized vaccine to fight my specific brain tumor, is free!! Pretty cool!! This is a therapy that Danny and I were considering in Germany. We go back and forth, constantly balancing over the tightrope of, "Shall we spend the money on the treatment? It's incredibly expensive, but it does have great success..." If we can get the dendritic cell therapy for free, just paying for the standard care at the hospital, it will still be cheaper than going to Germany.
Now, all Danny and I need to do is figure out if the risk of another brain surgery is worth the benefit of the personal vaccine. The answer to that question is going to be revealed in time, once we have more information.
It's a great oportunity, regardless of whether or not we end up in the trial. It's just nice to have the door open, the option to be treated if I so choose. I feel nervous, yet empowered.
