2/2/2002
Subject: AV Simon status - worsening
From: Brian Bulkowski
To: Dr Prados, Dr Larson

Hello Doctors,

I wish I had better news, but I thought I should share it with you so that you can start thinking about how we proceed. I hope I'm explaining this all clearly. Call me at 415 609 6926 if you have any questions or suggestions, otherwise, we'll see you on monday morning.

Over the weekend, I'd say Ann's condition has been steadily worsening.

On Friday, after treatment, she could move her legs and feet a bit. She lost the ability to move them sometime saturday, and on sunday she has very little skin sensation along the legs (although still a little in the feet). Late saturday she started losing control of her right hand, although she can still grasp. The left hand is doing well.

Pain control has been a problem. Her spine is fairly painful, sometimes getting up to a 1-10 rating of 7. Nights are especially bad. After talking to Marguretta, we started using Vicodin regularly, which works fairly well, unless we have to move her. She's using a little bit of the Atavan now and then, but keeping mostly with the Vicodin. The period where the vicodin wears off and the new one hasn't taken hold yet is problematic, but I'm starting to just dose regularly.

Early afternoon on sunday she started reporting problems swallowing. She is able to swallow, but has the sensation of not being able to swallow. Right now she's still able to take pills and fluid.

Her constipation has not been resolved. At Marguretta's suggestion, I used Bisacotyl friday evening, giving 10mg, then 5mg about 6 hours later. No effect. After consulting with another doctor, I used Magnesium Citrate on Saturday, giving 100ml in the afternoon, then 100ml 8 hours later, again to no effect. I've continued the Senecot stool softener throughout.

Steroid dose has been as follows. I went to 16mg (4x4) as per Margeretta's instruction throughout friday. On Saturday morning I called the neuro-oncology on-call line, and talked to a Dr. Chin. He recommended an extra 10mg dose, which I did, thus going up to 26 mg for saturday. His concept was to pull back on the vicodin to try to resolve the constipation. We did less vicodin during that day and evening, but the constipation did not resolve. Sunday I'm continuing with the 16mg with steady vicodin dosing, pending your exam and recommendation on monday.

Ann is still committed to fighting, and has only really started to realize the seriousness of the situation when her legs stopped working completly.