From: "Dr. D. Kossove" <doctordee@telkomsa.net>
Subject: management information
Date: Wednesday, November 12, 2003 9:39 PM

>>One more thing: the original oncologist added "barring divine
intervention" [a year to live].<<

well, hopefully, there will be more time available. If her tumor is
chemotherapy agent sensitive, possible at least a few years. Enough
time for the cancer genome project to come to some fruition, possibly.


>>We believe in that above all things. A strong faith and prayer go a
long way. <<

I think that people who feel this way receive a lot of comfort from
it. However, on the list, there are many brands and varieties of
religious observance, and it works out better if religious observance
is kept to the private sphere.

>>Modern biotechnical advances, <<

It is not just the modern advances, but the KNOWLEDGE of them... it
takes a while to permeate. Lists like this one speed up the process.

>>the attitude of one's doctor (SO IMPORTANT)<<

actually, this becomes less important as people gain better knowledge
and insight into the disease and what is available. For example, many
sarcoma oncologists do not recommend RFA for lung mets, because large
studies have not yet hit the literature, but people on the list did
use it and did get useful chemo-free time with much less pain and down
time than a thoracotomy.

Long term high grade LMS survivors tend to seek out and go to the
treatment that they need. Attitude, that the doctor is on your side
and trying for an extension of time, is of course very important.
Information about trials, is also very important. But as time goes
on, individuals tend to take over their care to a greater extent, and
to work with their doctors as a team.

>>and great a great running conversation at this website will work
together to give my sister a lot more time, we are praying.<<

You don't have to pray. You can find out. Eventually you will get
some of her tissue for testing and find out what chemo agents will
work well for her. That takes SOME of the guesswork out, makes it
more likely she will use chemos that work, rather than waste time on
dead ends. However, if her tumor tests come back highly resistant to
a lot of chemos,then that is the time to look at immunological things
[like interleukin] and vaccines.

Did they do anyoperation on your sister so that they have a block of
tumor, or did they just do a biopsy? If they have a block of tumor,
it might be possible to do RNA analysis for some chemoresistance
testing....

This info, and grade and where the mets are, etc should be in the
signature. So we know each time, and don't have to ask. Helps when
we are discussing options.
warmly,
doreen
Together we are more, and more effective, than  