Subject: Lesley Update - 9/26/00 Date: Tue, 26 Sep 2000 15:00:42 -0400 From: David Baldauf Hello from rainy Billerica! In spite of the gloomy weather, today's news from the doctors is about as good as it can get. I haven't written in over a month since there wasn't much to report. Lesley has changed little since the last Lesley-gram. If anything, things are a little better. Last week there were several days where Lesley did not need or want Tylenol for her eye pain. She also has gone about a week without wanting to wear a patch - a sure sign that her eye is bothering her less. Her spirits and energy both are as high or higher than they've been. The chemo last month went smoothly, accompanied by the usual amount of fatigue. Two slightly negative things were that the aphasia seemed to get ever-so-slightly worse, and 2 weeks ago her Dilantin level was a little elevated (possibly causing a little sluggishness) so we adjusted her dosage. So what did the doctors say today? Yesterday Lesley had her every other month MRI taken. Today we saw the neuro oncologist who reviewed the scans and checked her over. He said that the tumor was stable. In fact, there was a little less enhancement (area of possible activity) around the tumor. The fluid-filled cyst is a little larger, with some additional swelling around the cyst. He was not overly concerned and we're just to keep an eye out for signs of pressure in the brain - but he doesn't expect any problems. We did agree to raise the Decadron back up to 12 mg/day from the 10 mg/day. That may help the aphasia as well as the swelling. He said he was "very happy" with the way things are currently and even said "that's great!" when looking at the scans. We'll be starting Round 11 of the Temodar tomorrow. We continue the rounds of Temodar until it shows signs of no longer working. At that point we will select another chemo to try (CPT-11 has been mentioned). I've read that Temodar can be given for at least 24 rounds. Without having tumor shrinkage, this is about the best news we can get. We then met with the neuro ophthalmologist who said that the condition of Lesley's eyes was stable. We'll go see her again in 3 months. School has started and the kids' activities are in full gear again. Lesley is really engaged in their lives. She derives much joy from their successes but worries quite a bit about them putting in enough time on schoolwork and music and too much time on TV and the computer. Sounds like a typical parent to me! If you'd like to view prior updates on Lesley or view our family web site, go to http://www.davebaldauf.com Dave -- Dave Baldauf, h/o Lesley, gbm, dx/srg 8/99, rad 9/99, rad completed 10/99, debulk srg 10/99, bone flap removal srg due to infection 11/99, started Temodar 12/99, completed 10th round of Temodar 8/27/00 mailto:dbaldauf@alumni.brown.edu web site: http://www.davebaldauf.com