Update 6/29/2012: Shannon died today... click HERE for details.
We will leave her survivor story up as it was an amazing jourey.
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.
LONG-TERM SURVIVOR SHANNON CONTINUES THE FIGHT
17-year survivor Shannon celebrated her "rebirthday" on June 15, 2011, the anniversary of her original BT diagnosis. There was much to celebrate. A recent new tumor (April 2011), deemed inoperable by her excellent medical team at Swedish Neuroscience Institute in Seattle, was treated with CyberKnife on May 23rd. Only two weeks later, Shannon had already regained the ability to snap her left-hand fingers and to tie her own shoes (these left-side symptoms were presumably caused by the right-side tumor near the motor area). Shannon and her loved ones remain hopeful for continuing improvements from the long-lasting CyberKnife treatment, as well as promise of new treatments to come, possibly including Novocure and vaccine trials.
Shannon has been in nearly continuous treatment since 2007. Her tumors seem to keep coming back, but she is a fighter and determined to keep going. Many brain tumor sufferers and families have been heartened by Shannon's amazing survivorship. All of us who know and love Shannon are simply awed by her strength and grace.
Due to fatigue from Shannon's recent treatment, she is not accepting emails at this time, but will reopen email access as soon as she feels up to it – Shannon loves the mail she gets from this page! Shannon would also like to update her story when she is able. In the meantime, I have included a summary of Shannon's brain cancer history below.
Together in hope and remembrance,
Christy Brewsaugh, Shannon's Aunt
Eagle Creek, Oregon
Musician, Brain-Activist, devoted Auntie of 17 year survivor Shannon
SHANNON'S BT HISTORY
PLEASE HELP US FIND A CURE!!!
- June 15, 1994 – Initial diagnosis, oligodendroglioma grade 2 (right motor area), 1st surgery followed by six weeks of external beam focal radiation (5580 rads)
- May 2000 – 1st recurrence, Anaplastic oligo grade 3 with 1p/19q deletions (same location), 2nd surgery June 27, 2000, followed by 12 rounds Temodar (5/23) at UWMC in Seattle
- May 2006 – 2nd recurrence, Anaplastic oligo grade 3 with 1p/19q deletions (same location), 3rd surgery May 18, 2006, followed by 12 rounds Temodar (5/23)
- September 2007 – 3rd recurrence, mixed oligoastrocytoma grade 3 with 1p/19q deletions (same location), MGMT 5%, 4th Surgery with Gliadel October 17, 2007, as part of the Dendritic Cell Vaccine Clinical Trial at Cedars-Sinai
- Feb and Apr 2008 – 4th recurrence (MRIs showed a small spot but patient/family not told until later)
- June 2008 – MRI showed a small spot, first time we learned of this
- Aug. 18, 2008 – MRI spot double in size, inoperable (inside right motor fibers), dx recurrence, Dr. Spence now recommends Carboplatin+Avastin
- Sept. 16, 2008 – MRS to confirm dx
- Sept. 17, 2008 – Began Carboplatin+Avastin treatment
- Oct. 2008 – consult with brain cancer nutritionist Jeanne Wallace/Nutritional Solutions
- July 2009 – Dropped Carboplatin to preserve bone marrow, continued with Avastin as monotherapy
- November 2009 – 5th recurrence, inoperable tumor, right motor area
- December 2009 – CyberKnife treatment plus Temodar at Swedish Neuroscience Institute in Seattle
- January 2010 – Continuing with Temodar (21/7 schedule) and adding Avastin back into the mix
- December 2010 – Began CCNU (Lomustine) every six weeks, continuing with avastin every two weeks
- April/May 2011 New tumor below motor area, inoperable. CyberKnife May 23, 2011.
UPDATE ON SHANNON
February 28, 2012
Shannon started having seizures around two or three months ago. For Shannon this was unheared of. Before this, her only seizures were the grand mal seizure in 1994 (her presenting symptom, leading to BT diagnosis), and a surgery induced seizure in 2001 (a small amount of blood got on her brain during surgery, causing a seizure). Anyway, medication quickly handled the recent seizure activity, but it seems the seizures were a sign.
Since then, Shannon has been on a one-month MRI schedule. At her January 6th MRI, her tumor had doubled in size in one month. Then at her February 7th MRI (one week ago today), the tumor had increased by another one-third. Now her NO (Henson at Swedish in Seattle) has her on avastin plus VP16 again (the VP16 at a half-dose because her blood counts went too low the when she used it around October/November).
For Shannon, the now much more aggresive tumor is having devastating effects. Her tumor is in the right-side motor area, meaning her left side is affected. She is having great difficulty walking (she cannot even feel her left foot) and has pretty much lost the use of her left hand.
Shannon has had so many treatments, and many of the treatments are considered to have "failed," meaning her doctors do not believe those treatments can be effective for Shannon anymore. We are terribly worried about Shannon. Some of us feel that avastin plus a half-dose of VP16 is hardly sufficient to stand up to the more aggressive way her tumor is acting. We may be seeking outside opinions.
Prayers are of course welcome.
GOOD NEWS! On March 6, 2012, Shannon's MRI showed that her tumor shrank by half! She has been on a one-month MRI schedule, so that is really something! The treatment appearing to work, they agreeed Shannon would continue on the same treatment — avastin every other week, half-dose of VP16 every evening. Plus an "add-on" of hemp oil (a friend got it for her), which has been shown to have anti-brain tumor action. Thank heaven, surgery is off the table for now (no pun intendedJ).
And since then, Shannon's most recent MRI (May 3, 2012) was stable — so that's two months of either shringage or no growth. Woo hoo, we'll take it!
Shannon and her loved ones will celebrate her 18th "Rebirthday" (or Tumorversery) on June 15, 2012.