From: Dr. D. Kossove <doctordee@telkomsa.net>
Subject: !!!marina's story of fives
Date: Tuesday, December 10, 2002 4:52 PM

Date:    Mon, 9 Dec 2002 14:33:29 -0600
From:    Keith Symcox <keith-symcox@UTULSA.EDU>
Subject: my story of five's

Hello to all,

Pearl Harbor Day 2002 marked the fifth year anniversary of my first
surgery.  Back in December 7, 1997 things looked very grim.  The
surgeon who removed my huge primary tumor estimated around 50
metastatic tumors within my liver.  Not really knowing what type of
cancer I had, the same surgeon estimated that I had about five months
to live.

The local oncologist and surgeon were quick to recommend that I see a
sarcoma specialist.  The last day the surgeon visited my hospital
room, he gave me a small piece of a paper.  It was his home phone
number.  He told me to call him any time I needed to talk.  He said,
"go to MD Anderson, maybe they can help you."  Then he bent over and
whispered lightly into my ear "but I doubt it."  Then he left.

The surgeon's chilling secret was the beginning of a 34 month
nightmare.  I landed at MD Anderson in January 1998, and found myself
in the care of a very kind mannered specialist.  But in those days,
there was no gleevec.  He advised that I had about a 10% chance of
responding to any form of chemotherapy, and suggested that I enroll in
their new trial for gemcitabine.  And so I did.  I was officially
"patient #1" in that trial.  Ironically, the same month of January
1998...a Japanese group of researchers published a paper in Science,
describing activating c-kit mutations in GIST.  At the time, neither I
nor the sarcoma specialist understood the significance of that
publication.

Over the next 34 months I traveled from Houston to Los Angeles to
Boston looking for treatments.  I saw four different oncologist, three
who were sarcoma specialists.  At one point, my body had endured five
different types of chemotherapy.  None worked well or shrunk a single
tumor.  But a couple of the harsh chemo drugs seemed to have helped
marginally.  Though I could not have appreciated the significance at
the time, the tiny margin of time gained from seemingly ineffective
poisons utlimately saved my live.  So in a way...the doctor who gave
me gemcitabine is part of my personal gleevec success story.

Also there was an 8 hour cryosurgery on my liver on my 39th birthday,
and a chemo embolization followed eight months later.

Eventually, my tumor mass was so large that I appeared very pregnant.
I enrolled in hospice.  And in hospice I waited for 8 long months...on
oxygen, stoned on morphine and other drugs, in a wheel chair, waiting
for the tumors to take me.

In the summer of 2000, I was completely bedridden, and had been for
the most part of the previous year.  I had already lived beyond the
estimates of the hospice nurse.  I slept 24 hours a day.  My husband
continued to read the support mail from the LMS- ACOR group.

From the LMS group, came the first rumors of Sti-571.  The first word
came from a dear woman named Joyce Prichard.  Several members of the
LMS list wrote privately to my husband to tell him the latest patient
grapevine information as to where to find a slot in an sti-571
clinical trial.  My time was quickly running out.  The LMS ACOR group
was the timely grapevine that saved my life.

Following the information from the LMS ACOR group, my husband landed a
slot for me in the phase II gleevec clinical trial in Oregon.  Just
getting me to Oregon was no easy task.  It is a long way from my home
and I could not readily  walk or sit.  But as my husband said to me
when I thought the travel would be impossible, "you will go, you have
no choice, your life depends on it."

Once there, I met Oncologist #5, who was the gatekeeper to the
promised Land of Gleevec.  I was cachexic, gray.  Sweat poured from my
head, perhaps from tumor fever or from my heavy hospice narcotics
habit.  Oncologist #5 made a single observation about my condition,
"you look pale."  I failed the blood test criteria to enter the trial
the first time.  Fortunately, Oncologist #5 gave me one more chance at
the blood test.  I passed by the slimmest of margins.  As I learned
later, the gatekeeper was rather tenuous when he allowed me passage
into the Land of Gleevec.

One of the sharpest memories in my entire life is the moment Lora
Wilson laid out six orange pills in front of me in the clinic infusion
room.  I was so weak, that I could barely sit upright in the recliner
chair.  For a few seconds, I stared at the pills on the fake wood
grain table, I thought to myself, "This is it.  My entire life, and
everything about it has come to this."  That was 27 months ago.

The tumors thus far have shrunk tremendously.  These days my life is
fairly normal except for the quarterly visits to see Oncologist #5,
and the stress I feel that each ct scan may bring the news of the end
of the gleevec ride.

Marina


 