Friday, January 7, 2011

As the world turns....

The last few days have been spent trying to figure out what the best option for treatment might be. Most of it was spent on the internet, and I can't imagine how people managed to care for themselves before it existed! Sorry, I refuse to embarrass Gore by misquoting him, when in fact *I* invented the internet. Or at least - I work for the company that helped invent it....

But I digress. Today I had an appointment at UCSF talking with one of the fantastic oncologists there, Dr. Clarke. I was ably assisted by Gabrielle, a ridiculously amazing and caring "survivor" who has dedicated a lot of her time to battling brain cancer. Together we whittled down the options to a plan that seems to make sense - until you throw in my insurer. Kaiser. Up until now I have actually been very fond of them, and stuck with them even though I had an opportunity to change health plans at work. I'm really hoping not to regret that decision, but so far I've heard far too many comments on how the best clinical trials I can find, those with the most likely chance of long term survival, will likely not be supported by Kaiser. I am certainly not going to let that stop my choices, and we will see if they would really be so cold. I'm hoping they won't.

In terms of my list of choices, I am mostly looking at several trials involving vaccines created from the tumor itself. One trial is at UCSF, and two are down in Los Angeles (AE, I might be visiting you after all!) There is another Phase 1 trial involving retroviruses, paid for by the drug company supplying them (so Kaiser wouldn't deny that one). Unfortunately, since it is Phase 1, there isn't much evidence that it will work, and not enough evidence that it won't cause problems. I'll be talking with the head of that clinic at UCSF on Monday and maybe that information will persuade me one way or the other.

I really appreciate the kind words passed my way by everyone out there. It means a lot!


  1. Wow, brother. Thinking of you. Didn't read your prior post til just today, but feel free to email or call if (for some reason) you want the perspective of a doc who doesn't really know the first thing about treating this, or just someone to talk to.


  2. Hmmm. So why would you prefer a trial over surgery? I'm not saying "yay surgery!" but is it not as likely to be effective?

    Courage my friend.

  3. Mom, Laurence, and I are thinking about you and sending love. I will come up anytime to see you and talk neuroscience, Camp M, Michigan's terrible football team, serve as a your driver, bring you food, or anything else that tickles your fancy.

    Have courage and know that you have a whole community of people who love you and are willing to help you fight this fight. xoxoxo kjp

  4. Deep, the trial *includes* surgery. They cutout the tumor, then use those cells to develop the vaccine specific for me. Pretty cool! Surgery alone is really not an option. If I don't clear for any of the really good trials, or after the surgery they find I don't have a big enough tumor, I still need to find some kind of treatment to keep it at bay. Probably some kind of trial chemo that has shown promise. I'm not there yet....