November 12 2008 Update
Brain Tumor Centers, DCVax, Sutter Neuroscience Institute No Comments »It has been a few days since I’ve updated the blog here and for good reason! We have had so much going on in terms appointments. I guess when you have about 6 doctors, add a few more and sprinkle in some physical therapy, a seizure and some DMV red tape life can get busy! But we are good in spite of this. I must admit I have been up and down since my last post emotionally. It’s hard to fully accept this diagnosis. Jumping from a grade 3 to a grade 4 is a big deal and the enormity of the situation coupled with the pace of treatment options needing evaluation can become a blur. All of this aside, the diagnosis is bleak but this is why we have a very talented team in place headed by my Neurosurgeon, Dr. Edie Zusman, who has performed both of my craniotomies. Thanks to her, I am walking with a cane and can walk fairly well without it now! Physical therapy is helping tremendously. And, we know that God is in the middle of all of this.
By the way, the Sacramento Bee ran a terrific story on Dr. Zusman in this last Sunday’s paper. The gist is she’s the only female member of the Amercian Board of Neurosurgery and is ranked in the top 37 best neurosurgeons in the country. Pretty comforting and if you read this story and what she went through as a woman dealing with a sexist, sometimes discrimantory and very male-dominated environment, she has accomplished much more than what she does in the operating room. I’m proud to have her as my neurosurgeon.
So I digress. I have been up and down but mostly up. With regard to my condition and what’s been happening:
DCVax-Brain Vaccine
The vaccine is being manufactured. Such a blase’ term for something so important but nonetheless it should be ready shortly. The “red tape” we are working through is some last minute FDA paperwork. There was a lot of FDA paperwork up front and approval from the Neuroscience Hospital Board. With that behind us, they has to approve my use of this which is a formality really. So, I should be able to get and see the Neuro Oncologist who will be performing the infusions either the end of this week or the beginning of next. There is no sense in seeing him until the FDA paperwork is finished.
UCSF Trip
We went to the UCSF Brain Tumor Center on Friday of last week. This was marginally helpful at best. UCSF doesn’t push vaccine therapy and based on this meeting doesn’t even believe in it. Therefore, they discounted the entire approach and basically told me that they don’t believe it will be helpful to me at all. The Neuro-Oncologist basically wished me luck but said once you do this you’re cutting yourself off from a lot of other options. This is a very true statement with any trial you decide to enroll in because with most trials, you have to have not been treated before – otherwise, how are they to tell whether or not their drug is working and / or whether or not the previous treatment has hindered the trial drug? However, this world is also full of politics. A goal is to get patients enrolled in trials. Well, it turned out to be a single trial that he could offer. He had one. A new one. No data, no information about survival rates – nothing. When I told him about UCLA/Cedars Sinai using the same vaccine I was planning to use, and Dr. Black’s program down there which uses the DCVax vaccine whic does have available data, the neuro-oncologist really touted his own trial. He also indicated that tumor was left behind. About 10%. Not true. Sutter’s Neuro-Radiologists confirm this is post-op changes – meaning scar tissue, swelling, etc. Interesting.
Well, that said it all and he suggested we spend 1/2 hour with his nurses acquainting us with the trial. He sent us to another room. When the nurses arrived we asked for paperwork to read up on it and decided to depart. We are not discrediting UCSF at all. This is a wondeful institution. They have some of the best neurosurgeons, neuro-oncologists, etc. in the world but this just wasn’t a fit for us. That was about it. So, we came back home and ruled that out. We really were more interested in a backup plan anyway so we’ll put that together and it may or may not include UCSF. We’ll just have to see.
Other Updates
On Saturday morning I had a pretty bad seizure. As usual, I didn’t lose conciousness but it was pretty scary. My left shoulder and arm were involved instead of my leg which was odd. I took a few ativan with Rachael’s help and that did the trick. It last about 5 mins but it was a bit ugly. Oh well – it’s part of the territory. The tumor removed was about 2cm x 3cm so that’s bound to result in this activity. My concern moving forward is once these neural pathways are opened up by having a seizure, it’s easier for your brain to “find it’s way” so-to-speak to another one. However, I’m comforted in knowing that after my first surgery in 2007, I had one serious seizure and then nothing.
The DMV is pushing for a “reexamination” of my driving. This is pretty standard for what they refer to as a “brain injury”. So I had to fill out paperwork and my Neurologist does as well. Again, it’s just red tape. You’d think they just ask about the surgery, my deficits as a result, etc but I guess this allows them to open the door on everything! All diseases, issues, etc. Funny. Are you an alcoholic? Do you have heart disease? Issues that have nothing to do with my brain surgery. Well, ok. The worst case is I take a driving test but my concern is the time it will take because let’s face it, our government operates like an old rusty Chevy El Camino that’s been rotting in a junk yard for 30 years. Slooooow.
My company is the greatest organization. My wife told me today that they called and want to bring us a “Thanksgiving Feast”. Basically you can get these complete meals for so many people and everything is cooked and ready to go – turkey, stuffing, cranberry sauce – you name it. I am so blessed to work for a company that is just so caring and supportive. Both times I have had to go on leave our CFO, whom I report to, has told me just to focus on what I need to do and my family and that they will make sure that Rachael, Keegan and Aidan are taken care of. How wonderful and what a blessing it is. Words aren’t even enough to describe how much this means to Rachael and I.
Aidan and Keegan are doing good. Aidan got his very first trophy last week for soccer! He put it right next to his bed on his bookcase so he could look at it as he wesnt to sleep. He’s had 6 goals this season and is thrilled The last soccer game is Saturday. That’s where I was heading last Saturday when my little problem cropped up!
Anyway, that is about it for now. This week and next should once again be busy. Hopefully one of the appointments will be to get started with the vaccine so we will be praying about that.
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