Subject: Lesley Update - 4/5 Date: Wed, 05 Apr 2000 15:53:28 -0400 Monday Lesley went to the neuro ophthalmologist and Tuesday she went to the neuro oncologist. We are happy to report good news from both appointments! The neuro ophthalmologist said he was "encouraged" and he gave Lesley a "clean bill of health on your right eye, almost." The vision in her right eye is better than it has been in any of her appointments. He said the swelling on the optic nerve was way down and that the medicine was being effective (Diamox and Decadron). That explains why Lesley has had few complaints about the eye lately. More important was the news from the neuro oncologist. We got the MRI and bloodwork done and met with the doctor. The MRI shows tumor shrinkage, "substantially less enhancement" (that's the bad stuff like tumor and necrosis), less swelling, and cyst shrinkage. The doctor was "ecstatic"! He said this confirms that we made the right decision at our last appointment. We realize the tumor will never disappear, but this is about the best news we can get at this time. We are so happy!! We also noted that Lesley's aphasia has not improved with the increased Decadron dosage. The only reason we had previously decided to raise her Decadron level from 16 mg/day to (the current) 24 mg/day was to see if her aphasia improved. She exhibited no other symptoms that might result from a too low dosage of Decadron (primarily headaches). So we agreed to try to reduce her level to 12 mg/day since we think her current degree of aphasia is what she is stuck with regardless of her Decadron dosage. If we can get her to and keep her on the 12 mg/day (or lower) it would be great as there can be side effects from long-term usage of high levels of Decadron. The bad news from the oncologist - he doesn't want us to go on vacation in Orlando the week of the 16th -- without him. :-) He gave us some cautions about the sun, violent rides, and not sitting still for too long at a time, but said to have fun! Blood counts were very good - we started Round 5 this morning! Hurray for Lesley!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 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, started 5th round of Temodar 4/00 mailto:dbaldauf@alumni.brown.edu web site: http://www.davebaldauf.com