Subject: Lesley Update - 3/14 Date: Tue, 14 Mar 2000 14:20:54 -0500 It's been a bit of a roller coaster the past 30 days. Fortunately the lows have not been too low. Lesley continues to do generally well. She completed Round 4 of the Temozolomide chemotherapy with no significant problems - only a little fatigue. The main problems currently are the aphasia which has gotten slowly worse, and vision problems. The aphasia has steadily (but slowly) worsened since she was tapered from 24 mg/day of Decadron to 16 mg/day. When we met with the doctor on March 7th, he recommended that we go back up to 24 mg/day to see whether that helps. His reasoning was that 24 is not that much worse than 16 for side effects. He was hoping to get her below 16 since that would be a significant threshold in reducing the side effects, but he concluded that wouldn't work. She has been back on 24 since the 7th but has not shown any improvement in the aphasia. He also said that the aphasia could be due to tumor growth. He didn't think it was, but he said he might have misinterpreted last month's MRI. He gave us 2 options - stay the course and do Round 4 of the Temozolomide and see how her next scan in April looks, or get an MRI done (in a few days, when one could be scheduled) while postponing Round 4 until we get the results of the MRI. If the MRI showed growth, we would start on a new type of chemotherapy. If the MRI showed no growth, we would start Round 4 ASAP. His recommendation was to stay the course. He believed his MRI interpretation was correct and that an MRI taken one month from a previous one would not show much change and would be hard to interpret any change. For those reasons and for others, we agreed to start Round 4. We could not have our cake and eat it too since once we started Round 4 we would have to wait 30 days until we start a different chemo. At that same appointment we found out that Lesley had a toxic level of anti-seizure medication (Dilantin) in her blood (30 vs the 10-20 it should have been). We're almost positive that's because the pharmacist changed brands on us part way through the month ("Oh, no! Never change brands. The absorption is different with each brand," says the neuro oncologist after the horse has left the barn.) Lesley had been shaking a little more in her hands and feet. "A sign of Dilantin overdosing," says the doc. Yeh, as if nothing else might cause that. So, we reduced it to take care of that little problem. Eyes. Lesley has been complaining about her vision, oftentimes taking Tylenol for a pain in or behind her eyes. She was quite worried about them. When I talked to the neuro ophthalmologist, he was muttering about doing the surgery. He talked to the oncologist and his surgeon and said we should come in to see him (the ophthalmologist). There was a bit of discussion about whether the benefit of the surgery was worth the risk, especially if Lesley had to undergo general anesthesia vs local. After examining her, he said that there is hardly any change in her vision and we should continue the 2000 mg/day of Diamox and not do the surgery and to see him in a month. He was encouraged/encouraging and said that people can go years with their vision intact with the nerve in the same condition as Lesley's. No mention of surgery at all. (We had finally caught up with him after his vacation and he said to go ahead and go from 1000 mg to 2000 mg even though he had not talked to the oncologist. The oncologist vaguely remembered he had a note from the ophthalmologist.) Since then, Lesley's eyes seem to be doing a little better. Except for the aphasia and eye, some morning blue periods, and a couple of days with low blood pressure, Lesley is doing well. She has been going on the treadmill quite a bit, and going out shopping, eating out, and to children's functions with me. We also hosted a sleepover party for 9 boys Friday night/Saturday morning, and had a party for 7 girls and 1 boy on Sunday. All this while on days 3, 4, and 5 of chemo! Counseling continues although we had to miss Kid's Count Too! this past Saturday due to basketball playoffs. My sister comes in the 16th and leaves the 19th, and Lesley's dad may be coming in next week. I've established a beginning web page on my home computer. Among other things, I have placed copies of all of these "Lesley Updates" in chronological order for those of you who may have missed some. There's also a link to the pictures from our summer vacation. The URL is: http://www.davebaldauf.com Don't you just love being a geek! :-) 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 4th round of Temodar 3/00 mailto:dbaldauf@alumni.brown.edu