Subject: Lesley Update - 6/8/01 Date: Fri, 08 Jun 2001 10:55:45 -0400 From: David Baldauf Well, this week has been eventful, but not in a way we expected. We met with our new neurooncologist at the Dana Farber Cancer Institute on Tuesday. He wants to hold off on chemo until Lesley is stronger. He said they normally wait 4 weeks after surgery until doing chemo. 2 weeks is minimum. Given the new tumor, he wants to give her the chemo as soon as he thinks she's strong enough. So, we have an appointment for next Tuesday at 11:30. We discussed several possibilities. The two that it boiled down to were: 1) BCNU (Carmustine) and high dose tamoxifen in combination, or 2) Gleevec prescribed off-label. BCNU is one of the traditional first line of chemotherapies. The word on the internet is that it is not terribly effective and can be a little hard on the body. It is given intravenously in about 1 hour once every 6 weeks. It can cause respiratory problems, and can cause blood counts (red blood cells, white blood cells, and platelets) to decrease. High dose tamoxifen has a better reputation on the net. The neurooncologist says it is effective for 15-20% of the patients when administered alone. According to the net, when it is effective on a patient, it is very effective for a number of months. It is given by pill. I'm not sure how often it is given. When BCNU and high dose tamoxifen are given together, it is effective for 20-30% of the patients. Gleevec is the new drug recently approved by the FDA for another type of cancer. It is currently in Phase 1 clinical trials where they are escalating dosages to see where toxicity begins. The doctor recommended against it because they don't know the proper dosage yet and they don't know its efficacy yet. I asked the doctor whether, if we give Lesley a more traditional treatment (e.g., BCNU and tamoxifen), if it failed would we have enough time to give her a shot at a new treatment. He wasn't sure. I then asked how long after taking the BCNU/tamoxifen would we have to wait until starting a new type of drug. 6 weeks, he said. So how do we decide? I've tentatively decided to go with the BCNU/tamoxifen. It has been effective on some patients. The side effects may limit how long we can take it before we have to switch anyway. Once the Gleevec trials are farther along, we may have better information about dosage and efficacy. Lesley has had her ups and downs. She is not complaining of any more headaches other than what she has been having. However, she has had some problems - her word finding is worse than before surgery and continues to worsen (although today it seems pretty good), she has right hand dexterity problems, she is sleeping more (about 14 hours a day), and as of Wednesday she started having some moderate balance problems when walking (although not all the time). The surgeon took Lesley's stitches out on Wednesday. The incision looks great (from a medical standpoint :-)) He thought the balance problem was the result of tumor progression. Last night and today she seems to be doing well. She did some walking outside with her father last night, and this morning she did very well with her in-house physical therapy visit. Everything is fine with the children. My parents are flying in for 2 weeks on Saturday, and Lesley's dad is leaving on Sunday. And so it goes... 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, 18 rounds of Temodar 12/99 - 4/15/01, MRI on 5/7/01 shows growth and new tumor area near hypothalamus, surgery 5/22, new chemo as soon as possible after surgery mailto:dbaldauf@alumni.brown.edu