From: des@helix.nih.gov (David E. Scheim)
Subject: New therapy for glioblastoma
Organization: NIH
Date: Tue, 12 Jan 1993 19:17:33 GMT

In response to about three queries on brain glioblastoma over the past several
months, let me relay these recent postings from the CompuServe cancer forum.
This was a case of particular interest on the forum, since we followed the
case from the beginning -- diagnosis and requests for treatment options, the
choice to use Dr. Burzynski's treatment last summer, the arrest of tumor 
growth on scans a few months later -- and now small decrease after two more 
months.  It has been discussed on the forum that this therapy has provided
some documented long-term cures for glioblastoma and that the a trial of
this therapy by the NCI was being planned.  Any inquiry on the CompuServe
CANCER forum would be the best way to get more information.

#: 94248 S1/General / Help
    12-Jan-93  00:52:44
Sb: #Dad/Burzynski update
Fm: Dean  Mouscher 70401,1236
To: All
As many of you know, my father was diagnosed last June with glioblastoma
multiforme, a highly aggressive brain cancer.  He had surgery followed by
radiation and chemo but his tumors recurred almost immediately, and this time
they were inoperable.  His oncologist gave him "a few weeks to a few months" to
live, and said she had nothing more to give him.
I researched alternatives and Dr. Burzynski in Houston sounded by far the most
promising.  I prevailed over his oncologist, who was vehemently opposed to his
trying it.  We spent two weeks in Houston, then returned.  Dad has been on
Burzynski's medication (antineoplastons) ever since.
We just got the radiological report from his latest scan.  The summary is that
it shows "minimal decrease" in tumor size since his last scan two months ago!
That's pretty shocking, considering that his tumors were growing like mad
before he started Burzynski's treatment.
At this point, even his onc is beginning to change her tune.  She was clearly
surprised when she saw the scans, and pointed to several spots where she felt
there was slight decrease in tumor size (this was before we got the official
report).  She is a neurologist by training, and reported that his neurological
exam was improved since last time.  She said that she saw no reason to stop the
antineoplastons and added that "if it ain't broke, don't fix it."  To say the
least, her tone is quite different than it has been.
Of course, dad has been waiting for her blessing ever since he started, and he
is delighted.
Ironically, the only one who is dissatisfied is Burzynski himself.  He told me
that he expected to see more tumor reduction by now, and switched dad to a new
and more aggressive protocol.  He still sounds very confident that dad's tumors
will eventually disappear.
Dean 

There are 2 Replies.

#: 94273 S7/Cancer in Adults
    12-Jan-93  12:05:18
Sb: #94263-Esophageal Cancer
Fm: Dean  Mouscher 70401,1236
To: Michael J. Kelly 72230,3347
Mike:
Yeah, it's very, very discouraging.  I thought that when I finally convinced
dad to try Burzynski, my fight was over.  Boy, was I wrong.
It is absolutely shameful what a person has to go through to get the medical
treatment of his choice.  It matters not a whit to the powers that be that a
person has already failed all standard treatments.
The FDA keeps screaming that "unproven" therapies prevent people from getting
authorized treatment.  In my father's case (and in many others), the best
authorized treatment gave him a 15% chance of a few extra months, and an 85%
chance of leaving him worse off than he started.  It seemed to me that the
AUTHORIZED treatment was keeping him from getting  something that might really
do him some good.  As it turns out, that was exactly the case.  So who's the
quack?

Dean  

/*********************************************************************/
/*                      --- David E. Scheim ---                      */
/* BITNET: DES@NIHNEI31                                              */
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