1/20/2003
Subject: AV Simon status
From: Brian Bulkowski
To: Dr Larson

Hi Dr Larson --

I thought I'd drop a note and let you know how Ann has been doing. We were hoping to drop in and see you when we were last over at Parnassus, but it turned out to be more hectic than we planned.

Ann has been doing great in general. We had to reduce the dose of Temodar to 150 mg / m² because her white counts were low, but on the reduced dose she's doing much better. We stopped the OSI-774 at 300mg, but it looks like they're going to move to phase 2 on this arm (temodar + dilantin + OSI) at only 350mg, so we're close to the phase II dose. The white counts seem to be fairly stable at this dose.

However, a problem has cropped up. Since around christmas, she's been complaining of a tingly feeling and deadness in her right foot, and some similar feelings in her knee and hip on that side. Her calf on that side is sore. She was examined for blood clots in the leg on the 3rd and 6th of January, and none were found. It took all day to get through the ER and get the scans done, so we ended up missing you. However, all the doctors who examined her (Dr Chang, a neuro-oncology fellow I didn't catch the name of, 3 doctors/residents in the ER) didn't have a good idea of what the problem might be. Ann's descriptions of the symptoms weren't very specific, sometimes talking about pain, sometimes talking about the tingly feeling. In the last couple of weeks, the situation has been getting steadily, but slightly, worse. Her walking is very difficult, and she can just barely get herself from sitting to standing. Her description is much more in the direction of "tingly" than "painful".

We're pretty much in the dark at this point. The neuro-oncology nurses say that neuropathy (spelling?) is rare for Temodar, and would manifest more as burning pain. Could be something viral like shingles, I suppose, but they said that usually had some skin effects, and would be bi-lateral. We're afraid it'll be something serious, like regrowth, or growth of something new (spinal, or otherwise, pressing on the nerve). We'll be seeing a muscle and nerve guy we know in the east bay on wedsnesday, and be over at UCSF for the usual scan & meeing with Dr Prados next tuesday. Hopefully we'll learn something, and be able to embark on a treatment path - right now it feels a bit out of control, and Ann is afraid of paralysis (without any real data). She's hanging in there, though.

Just staying in touch. I hope all is well with you and yours, and that you had a great holiday season.

Cheers,
-brianb