Taking a break

I started Tarceva in April 2009 and added Avastin July of 2010 as part of the AvaTar protocol at NIH. So for 25 months I have been on Tarceva until 10 days ago when my protocol participation officially ended. The Tarceva and then the combination no longer was keeping growth slow. As of today I have relished 10 days of no treatment of any kind.

Driving yesterday at 2pm was a first since April 2009 - one side effect was my equilibrium being off just enough to prohibit driving . No 4 or 5 hours of down time mid day due to mushy brain and fatigue. I have already gained 8 pounds with my improved appetite. Too bad the weight has all gone to my belly. My skin rash has cleared enough that I no longer have "acne face". Generally my energy is up though my strength remains low due to muscle mass loss since April 2009. Maybe my tumors are growing more, but oh my gosh it is nice to have the break.

NIH diagnosis zeroed in on non-hereditary sporadic PRCC - not very responsive to another trial drug XL880 it seems. Per my NIH team suggestion, I am investigating 2 or 3 C-met Kinase inhibitor "first in man" trials, but may go on Avastin plus Torisel for awhile. My COBRA insurance will cover infusions but not pills such as Afinitor, so for a few weeks until Medicare kicks in my choices are extra limited. Insurance companies do tend to rule!

My cancer was first noticed in Dec 2008, and then identified as PRCC mets to lungs in March 2009. At that time an oncologist at Mayo inappropriately told me 18 mos to 2 years and already I know he was way off. Back then my hope was for a medical advancement within 2 years. It seems the Tarceva and Avastin drugs did at least buy me considerably more time to remain in the game. Best wishes to us all.
Bill