Updated 7/3/2008
Anaplastic Oligodendroglioma (grade 3)
Shannon O. - Diagnosed June 15, 1994
June 15, 1994. Grand mal seizure. My eyes
rolled. I turned blue. Stopped breathing. My
husband was terrified. He thought I was dying.
Rushed to ER. Woke up in a wheelchair. Nurse, in
my face, loud: “Do you know where you are?”
Hospital, I knew. “Do you know what happened to
you?” Not a clue. Carsick from the frantic car
ride, still fuzzy from the seizure. Stood up and
nearly fell over.
Waiting on a gurney in the hallway. Young doctor
stops by: “We think you have one of three
things: a brain infection, a brain cyst, or a
brain tumor - most likely a brain tumor.”
I am Shannon O'Brien. Self-advocate and brain
tumor activist. 26 years old at diagnosis, now
40 and a 14-year brain cancer survivor.
At the time all this took place, I was living in
Seattle, working as food server at a Japanese
restaurant. No medical insurance. The hospital
decided to discharge me. I had received no tests
or treatments of any kind. Luckily, my Aunt
Molly was there. She went to find a doctor.
Bless the luck of the Irish, the doctor she
found turned out to be world-renowned
neurosurgeon Dr. H. Richard Winn. He declared my
case an emergency, and five days later performed
my emergency 8-hour brain surgery, successfully
resecting my huge tumor, 100 percent.
I remember waking up in my hospital bed. Music
on the little radio, cello and piano, my two
favorite instruments. My life flew before my
eyes. I just cried. It all came out. I felt the
time ahead would be the toughest time of my
life. And it has been ...
Diagnosis: oligodendroglioma, grapefruit-sized,
right frontal lobe. Radiation therapy (external
beam focal ), six weeks, a lifetime dose. I went
through rehabilitation at UWMC, re-learning to
walk and talk all over again. My memory of this
part of my journey is kind of patchy. I did have
to stop working and go on welfare, then Social
Security disability. Marriage ended. Between the
tumor, the seizure, the surgery and radiation, I
now had a lot to cope with: depression,
short-term memory loss, headaches, fatigue,
pain. Somehow I began putting my life back
together. Six years went by. I dared to hope the
nightmare was behind me.
But no. May 2000. My first recurrence, after six
years. Same diagnosis. Brain surgery again, June
2000. Again, 100 percent resection by my
brilliant Dr. Winn. But my tumor had
“progressed” - anaplastic oligodendroglioma
grade 3, a more aggressive tumor. My hero,
neuro-oncologist Dr. Alex Spence, now advised
chemotherapy. I completed 12 grueling months of
Temodar between 2000 and 2002. I decided to quit
after one year of Temodar because it was killing
my spirit.
After four or five years of clear MRIs, a
confusing period followed in 2004-2005, with
something showing up on my MRIs that my doctors
thought might be from the late term effect of
radiation treatment ten years earlier. I also
got second opinion consultations with several
other doctors, but the diagnosis remained
uncertain. Finally in May 2006 they confirmed.
My second recurrence. Since I was having MRI
scans every month or every other month, it was
diagnosed when it was still relatively small.
Both UWMC and UCSF recommended radiosurgery for
this recurrence, but Dr. Del Maestro recommended
conventional surgery. My medical team at UWMC
agreed, and I had my third brain surgery on May
18, 2006. By this time, my beloved Dr. Winn was
no longer with UWMC. Dr. Silbergeld performed my
surgery. He said he performed a gross total
resection of all visible tumor. I went through
another year of Temodar, completing that course
of chemotherapy in June of 2007.
September 2007. Third recurrence. My MRI showed
a large recurrent tumor with some parts
enhancing. The UWMC tumor board considered my
new tumor inoperable. This terrified me! We sent
my scans out to Rolando Del Maestro in Montreal
Canada, Mitch Berger at UCSF, and Keith Black at
Cedars-Sinai Medical Center in LA. Dr. Del
Maestro said “operable.” Dr. Berger said
“operable.” Dr. John Yu ( Keith Black's
Co-Director at The Maxine Dunitz Neurological
Institute at Cedars-Sinai in LA) said
“operable.” Cedars-Sinai offered a trial
including surgery, Gliadel Wafers, and dendritic
cell vaccine treatment. I chose Dr. Yu and
Cedars-Sinai.
I traveled from Seattle to Los Angeles and
underwent my fourth brain surgery on October 17,
2007, performed by Dr. John Yu. The nine-hour
surgery was exhausting. The good news: Dr. Yu
was able to remove all the malignant (enhancing)
areas. Unfortunately, there was a shadowy area
in the motor strip he could not remove, but he
said it was not a big problem, that it looked
like low grade. The pathology showed mixed
oligo. I found some of this frightening. Before
this, I had always had gross total resection
(all visible tumor removed), and my diagnosis
had always been pure oligo. Also, during the
weeks after surgery, I found the Gliadel Wafers
made the recovery from surgery much slower.
Then began the vaccine trial. Once they
determined I was eligible for the trial (based
on recovering enough tumor tissue), they began
with leukapheresis (white cell collection) on
December 5, 2007. Then they prepared my vaccine,
using my tumor cells and my white cells. The
vaccine was administered three times at two-week
intervals: December 21, 2007, January 4, 2008,
and January 18, 2008. When I went back a month
later for my follow-up MRI after the vaccine
trial, on February 27, 2008, I received the best
possible news -- the MRI showed no visible
tumor! All gone, no tumor left in the motor
strip. Of course I was thrilled.
My doctors at Cedars-Sinai recommended follow-up
chemotherapy treatment, which can be
administered by my “home team” at UWMC. At the
time of this writing (June 2008), my latest MRI
showed a small spot. My case will go before the
tumor board at Cedars-Sinai, and I will face a
treatment decision again.
The present treatments for brain cancer are not
curative. We need new and better treatments.
More funding for research. Legislation to
improve the research system and to provide
better access to care, treatment, and
rehabilitation services for all brain tumor
survivors.
PLEASE HELP US FIND A CURE!!!
Shannon
