New Treatment

We met with Dr. Marcio on Wednesday, July 26th, as planned. We were given two options for treatment: 1) stay on the Sutent, or 2) try a new "metronomic" approach using cytoxin (cyclophosphamide) and vinorelbine (a relative of vincristine and vinblastine).

While we feel that the Sutent was helping to stabilize Elizabeth's cancer progression, Dr. Marcio is rather certain that it caused Elizabeth's last month-long hospital stay, much like the Avastin caused her 2-week-long August 2005 hospital stay. Elizabeth's current state of health is improving, but her body is still recovering and she is still somewhat fragile. Risking another "bleed" and possible subsequent infection at this point is not a wise choice. So we are going with option #2.

Elizabeth received her first infusion of vinorelbine on Friday, July 28th. She started her oral daily cytoxin Saturday morning. So far she is not experiencing any noticeable side effects, and we hope that continues to be the case. The treatment plan calls for vinorelbine infusions on days 1, 8, and 15 in a 28 day cycle, and a dose of 37.5mg cytoxin every day continuously (oral pills). We will be regulars at CHLA again on Fridays, at least for the next three weeks while we finish out this first round. If it isn't having any effect, we will then explore returning to the Sutent and/or whatever other chemo/drugs we haven't already tried in the past 2 years (there aren't many left!). Elizabeth's body needs to be far enough out from her recent surgical procedures (she had several during her 6/20-7/21 hospital stay) that we wouldn't be risking a bleed before we re-start Sutent.

This decision wasn't easy. Dad and I really do believe that the Sutent was having a positive effect in holding the cancer at bay. And we aren't abandoning the hope of using Sutent again in the future. Elizabeth just can't take another month-plus long hospital stay so soon, either physically or emotionally. We are hoping that the vinorelbine/cyclophosphamide continuous low-dosing will have the desired effect of continuously chipping away at the cancer cell membranes and keep it from spreading until she can get back on the Sutent, either in combination with the new treatment or instead of it.

Elizabeth is starting to get back her strength, though she isn't 100% yet. She has been showered with Angel mail yet again, and it has helped raise her spirits immensely. I can't even begin to describe the positive effect the stream of mail has on her. She is always happy to get cards and presents from relatives, but there is something intrinsically magical about getting special cards from people who she has never even met before. It makes her feel so very important. Thank you.

Today we are planning a big family outing--Costco shopping. Our first time out with EVERYBODY in the past two months. Elizabeth is looking forward to a hot dog lunch, probably followed by a churro, before we venture into the Sunday shopping Costco mob. Going to Costco may not sound very fun, but Elizabeth loves weekend Costco trips because they have "tables" as she calls them. Tables and tables of SAMPLES. She really is a simple girl at heart, and free finger foods make her smile! So that will be our big adventure for today. Our family schedule will finally start to slow down a little so we can get to planning our Sea World visit and Make a Wish trip, not to mention starting school again. Hopefully we'll be able to have some family fun time out of the house in the next week or two.

Thank you for your continued prayers. Please pray that this new treatment will be instrumental in stabilizing her cancer spread, at least until we can start back on the Sutent. Her tumor markers are over 6600--the highest they have ever been. Ever.