4/30/2002
Subject: Ann update -- not so good
From: Brian Bulkowski
To: Ann cancer list
Hi Folks,
Dateline: tuesday, 4/30
PLEASE FORWARD IF I'VE MISSED SOMEONE
We've got more pathology information, and the outlook isn't good.
Lymphoma is out of the picture, and primary brain tumors are in. [It's
a
bad day when you're hoping for lymphoma.] The tumor is anaplastic, ie,
growing
quickly, which is bad news (although it has some bright sides, such as
possibly
being more responsive to treatment).
The path guys are currently working on three theories.
* Glioblatoma
* Anoplasic astrocyctic tumor (sp?)
* Atypical terratoid rabdoid tumor (sp?)
The last is fantastically rare (only seen in 4 adults, more common in
children),
but one of the experts for this tumor is on the case (one Esmerelda
Chung,
at Summit Medical) and will be giving an opinion this afternoon.
There are a variety of characteristics, such as exactly how fast it's
growing,
that I don't know about.
The fact that it's hard to determine between these is, in fact, a bad
sign.
The categorization process is difficult, and has subjective judgement.
The
fact that it's growing quickly means we have to make treatment
decisions
quickly. There's a certain amount of room to hit it and see what it
responds
to, but not much.
Our strategy at this moment is to listen to what the Alta Bates people
say
this afternoon, and get the slides & samples over to UCSF as fast
as
possible (tomorrow morning) so their Path guys can start looking at
them
and give an opinion.
We're putting out a desperate call to find out who is the best
person
to be treated by, who will have the insight into treatment that makes
her
chance at life better. Anything you know about brain tumor specialists,
is
hoped for.
We're hanging in and fighting. Ann and I spent an hour this morning
quietly
listening to all the energy being thrown by all of you. This matters so
much
to us. We feel your energy and healing light, and need it to get
through
this very, very hard period. Please help us.
infinite love,
-brianb