Friday, May 27, 2011

Six weeks at a time

I finally got a chance to chat with Dr. B at UCSF after he looked at the MRIs and reports from Cedars-Sinai. It might have been one of the quickest conversations I've ever had with a doc! Basically he said it looked pretty good, though he did mention the same small bright areas that Dr. Rudnick described as well. He then said that I can basically stick with the plan laid out by Cedars-Sinai. Which means...six weeks of freedom! After that, I'll head in for my next MRI, hopeful that I'll get another stellar report which will buy me another round.

Monday, May 16, 2011

The reality of our world....

Today I got news about a couple of people from the brain tumor world. One of them was diagnosed about 6 years ago and was the first person who gave me advice when I was initially diagnosed. He had a recurrence in August. He then entered another trial which led to some surgical complications. From that point on it was a downward spiral that eventually took his life this past weekend.

The other is a friend who had her recurrence diagnosed around the same time as mine. The first clinical trial she was in didn't succeed and she was forced to find another trial and enter repeat surgery only a few months later. She was following in my footsteps in the Cedars-Sinai vaccine trial. This week, on her trip to LA to start the trial, she found out that her tumor had already grown back so fast that she can no longer enter the trial and needs to find a different approach to attack it.

I'm not entirely sure why I'm bringing this up now, besides the obvious fact that I really feel for Jim's friends and family and for Jackie herself and her friends and family. But part of me also sees this as another signal that optimism is important, but so is reality.

Monday, May 9, 2011


It's been about 4 months since my recurrence was diagnosed. It's been about 3 months since it was removed and I began the new clinical trial. It's been about a month since I was motivated to post anything. And it's been about 7 hours since I got the first trial results.

To quote the Cedars-Sinai oncologist, "It think it looks really good" and "You've got the best possible case scenario." Yay!

So what are the next steps? Well, first off I'm going to try to chat with the UCSF docs to see if they can (or even want to) convince me that starting some kind of chemo would be very important. Assuming they can't (or won't), then I'll be checking in again at 6 week intervals during the "crucial time" to see if things are being held at bay.