Subject: Lesley Update - 5/10/01 Date: Thu, 10 May 2001 09:34:25 -0400 From: David Baldauf The doctor's visit on Tuesday did not go well. The existing tumor has grown some, and there is an area of new growth near the hypothalamus. The doctor believes the new area can not be operated on because of its sensitive location, and that it doesn't make sense just to operate on the old area. He believes the new area cannot be treated by radiosurgery due to its shape and size. They like to restrict the radiation to 3 cm but the new area is bigger. He doesn't think draining the cyst would buy much and that it would probably quickly fill in again. So, he is recommending that we immediately (by next week if not sooner) switch to a different chemotherapy - BCNU. The BCNU would be administered intravenously for one hour every six weeks. He checked and MGH does not have any clinical trials that Lesley would be eligible for. I asked him about getting second opinions and he encouraged us to do so. So, we now have an appointment with the head neurooncologist at the Brigham and Women's Hospital here in Boston on Tuesday. Her current neurooncologist indicated that if we started on the BCNU that would make her ineligible for many clinical trials. So we're going to hold off until we hear from the Brigham and what they recommend and whether they have any clinical trials. We're also trying to get a surgical opinion from Dr. Peter Black (a top-notch neurosurgeon) at the Brigham. So far we've been unable to connect. Frustrating. I have called 6 times in 2-1/2 days speaking to 4 different people. We did not get any prognosis from the doctor. Lesley continues to do well with the exception of increased aphasia over the last few weeks. Lesley is holding up OK so far. So am I. Dave -- Dave Baldauf, h/o Lesley (45), gbm, dx/srg 8/99, rad 9/99-10/99, debulk srg 10/99, bone flap removal srg due to infection 11/99, started Temodar 12/99, completed 18th round of Temodar 4/15/01 mailto:dbaldauf@alumni.brown.edu website: http://www.davebaldauf.com