Saturday, July 18, 2009

Temodar, Avastin, Tarceva...oh my!!!

Yesterday I had my appointment with my neuro oncology team down at Kaiser Redwood City. It is Dr. Peak along with an amazing specialized Nurse Practitioner, Mady Stovall. They spoke with us for almost 4 hours answering questions and explaining what they considered to be the best treatment. They made us all feel pretty optimistic about the possibility of stopping this thing from taking over!

Essentially the latest standard treatment could work well, depending on whether my tumor had a certain "characteristic". How would this work? I would go through radiation treatment every day for 6 weeks while simultaneously taking Temodar. A couple of weeks after that I would have another MRI taken to check the status of the tumor. If it looks good, then I would continue the Temodar at a lower rate for maybe a couple more years, depending on how it effects me. If not...then I'm reaching in with my fingers and pulling it out.

There are some other options that I need to think about. I could add Avastin to my arsenal, though it could effect my life quality in other ways. In addition, if I add it now, and things don't work, it leaves fewer options for the future. There are also two clinical trials I might be able to join at UCSF. One of them involves the new vaccine style treatment, which could have great potential, but would definitely require additional surgery.

I do need to decide if digging in there again is a good or bad idea. The team at Kaiser thinks a good amount was removed and we should move on as soon as possible. I'm kinda hoping the docs at UCSF agree....

Meantime, I wanted to thank everyone again SO much for the kind messages and offers to help. It's definitely motivating me in the right direction. For now, my family has been taking care of me, and my physical status is improving (just in time to get knocked around by treatment!), but I'll definitely love getting help as the adventure continues....

6 comments:

  1. Those drugs sound like the names of Spanish pirates! Thanks for the update, and you can count on lots of help whenever you need it.

    ReplyDelete
  2. W - our thoughts and well wishes are with you (Sally - E's old roommate in SF)

    ReplyDelete
  3. Eric,

    I was so shocked to read about what you are going through. I know I barely know you but it has left me really thinking about the fragility of our existence.

    If you ever want to talk about "spiritual" stuff, I am here. Looks like you have a wonderful family and a lot of friends.

    A true living Buddha you are, no? I send you many many blessings and prayers.

    Oh yeah, one thing I will suggest is adding brown (or Russian) seaweed to help with radiation treatment. Let me know if I can send you further info.

    Christina — who you met on a flight back from Ecuador seven years ago.

    ReplyDelete
  4. Eric - it's your neighbor suzy (em's friend) - if you need anything, i'm just around the corner! My vibes are chanting for you and yours for a quick and speedy turn around.

    ReplyDelete
  5. Hey Eric,
    It was great hanging with you last week. Todd and I were both impresses with your great, positive energy and your awesome family.

    I'm around this Thursday or Friday (with kids) if you're up for a visit.

    Lisa

    ReplyDelete
  6. Erico, I am so happy to see your incredible spirit shining through on this blog - you amaze me!
    Having been through the ropes with tumahs, I can say that there is a lot more to this than the medication etc (although all are important) ... but I think you have the edge because of your attitude and support (despite what any of the journals, blah, blah, say!).
    I'm sure you realize this anyway ...

    I'm here if you need help along the way - shuttles to radiation, lunch, dinner whatevah! Or just visits to serenade you with guitar night brought to you :)...

    Thanks for sharing this incredible blog - you and your family are amazing. Lots of love - Jodi

    ReplyDelete