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Added another notch on 9/11 to my gbm survival belt. Now 28 years which means more than 10,000 days of survival when 28 days didn't seem possible due to the pessimistic glioblastoma multiforme-4 diagnosis laid on me. No doubt there are some unique characteristics of my case that have led to this survival. Yet I always maintained a sense of humor throughout my journey from day 1 (when yes there was little to laugh about) to the "easier" years of remission. My road has been rocky and veered far off path from what I expected at 17, but every day I awake it is another miracle. Attitude and faith might not be everything in this fight, but it counts for most of what you can control (unless your doc lets you prescribe your own meds!) Hope does indeed live; embrace it and keep on keepin' on!
In September 1987, a senior in high school, Matthew, 17, began experiencing headaches with nausea upon waking. His family physician was able to see pressure when looking in his eye, ordered scans leading to a prompt diagnosis. Diagnosed with a glioblastoma multiforme (gbm), in the right frontal lobe, a radiologist gave Matthew three to six months to live. The tumor was encapsulated, well circumscribed, about the size of a man's closed fist.
After all gross tumor was surgically debulked, Matthew received the maximum dosage of standard "beam" radiation. Matthew entered a SWOG clinical trial for intra-arterial cisplatin. The procedure had to be aborted due to risk of stroke after a capillary was nicked just mm's away from the tumor. The cisplatin would have assuredly left Matthew blind, perhaps this was God's swift intervention.
Matthew was fortunate to have a great local neurosurgeon who focused on providing Matthew with both quantity & quality of life. He made arrangements to enroll Matthew in a brachytherapy* clinical trial at UCSF. Dr. Michael Edwards & Dr. Michael Prados, guided the placement of the I-125 radioactive seed implants in Jan. 1988. 14 months later, it was necessary to return to UCSF for a craniotomy to debulk the radio-necrosis caused by the brachytherapy. This had a positive flip side, as these docs had seen better survival results in the trial with patients who had required the necrosis removal.
*NOTE: It is unlikely that brachytherapy will be available to you. It gave way to the more widely used Gamma Knife, X-Knife and other focal radiation delivery methods. Still you can always inquire about it.
Matthew enjoyed a long period of remission, during which time he graduated from college. A recurrence was detected in a routine follow-up MRI in Nov. 1993. Matthew returned to UCSF, where Drs. Michael McDermott & Prados repeated the brachytherapy, pushing Matthew's accumulated dosage of radiation to 170 Gy (17,000 rads).
In the summer of '94, Matthew began having complex partial seizures. After several AED "cocktails" failed to control the seizures, Matthew explored surgery as an option. In November '98 Matthew underwent a pair of craniotomies at the Univ. of Minnesota, under the care of Dr. T. Walczak, to retract his seizures. Testing revealed his right temporal lobe had suffered radiation damage and was the focal point of the seizures. The faulty temporal lobe was removed and Matthew was seizure free for nearly three years before his seizures returned. This time, however, the seizures were less debilitating than before the surgery.
September 11, 2004, Matthew celebrated his 50-50 (having lived exactly half of his life pre-gbm diagnosis and half post-diagnosis.) Matthew still relies on medication for his seizure control.
In 2005, Matthew's local neurosurgeon retired. During Matthew's final examination, the doc proclaimed that Matthew's chance of recurrence at this stage was probably now equal to the chance of anyone being diagnosed with a gbm. Beating a tumor is certainly an uphill battle, but living through and with a brain tumor diagnosis has its own challenges too.
On Sept. 11, 2010 Matthew's celebrated 23 years of survival with continued remission and generally good health. He is convinced of several positive factors that have lead to his long-term survival: 1. age of diagnosis 2. prompt diagnosis 3. proactive aggressive treatment incl. treatment center of excellence/clinical trials and 100% debulking 4. prayer and God's hand 5. location of tumor 6. UCSF!.
Matthew continues to advocate for other brain tumor patients-survivors, and persons with epilepsy. He reminds them to never let anyone in scrubs steal their hope.
In October 2010, Matthew lost his inspiration when fellow long-term gbm survivor, performing songwriter and friend David M. Bailey passed away. David reminded everyone to live life to the fullest by ‘loving the time.’
David's attitude took him a long ways and impacted many lives. Ultimately old-age was not in the cards for David, but he loved the time all the way. Anyone who lives life to the fullest will indeed beat their gbm like David no matter what the clock says.
Required listening to all faced with this challenge; his songs are available at: http://davidmbailey.com/ (start with love the time, my favorite cd)
Keep On Keeping On!!
In the latter part of 2010, Matthew began experiencing some neurological problems with memory and multitasking abilities. This is likely some radiation damage. This underscores the importance of getting a neuro-psychological examination done early in your journey to establish a baseline to compare change in abilities. (and follow-up tests as needed)
Matthew continues to take AEDs to control his seizures so there is no way to assess causation of these limitations. Matthew's last MRI showed no new tumor and he is now a few months away from 25 years gbm free!
As we still do not have a magic bullet, you choose the best treatment available to you and don't look back. You can live (or learn to live) with side effects from treatment; you just cannot live with a gbm growing inside your skull. Keep On!
In the latter part of 2010, Matthew began experiencing some neurological problems with memory and multitasking abilities. This is likely some radiation damage. This underscores the importance of getting a neuro-psychological examination done early in your journey to establish a baseline to compare change in abilities. (and follow-up tests as needed)
Matthew continues to take AEDs to control his seizures so there is no way to assess causation of these limitations. Matthew's last MRI showed no new tumor and he is now a few months away from 25 years gbm free!
As we still do not have a magic bullet, you choose the best treatment available to you and don't look back. You can live (or learn to live) with side effects from treatment; you just cannot live with a gbm growing inside your skull. Keep On!
September will mark Matthew's silver tumor-versary (25 years since diagnosis). He will have lived 100x longer than his 3-month prognosis. This would be like living to the age of 7,800 on an average 78-year life expectancy.
I do not have any changes to add to my story at this time!
September, 2013 will mark 312 months (26 years) of survival for Matthew. He was told he would someday have long-term side effects from his brachytherapy RT. The goal was to keep him alive at 17 despite this residual effect. He has now been living with these deficits for a couple years. He can still walk, talk, and eat. In general, his health is excellent and he has done exceptionally well given a GBM diagnosis. He is still trying to master the "Man with Two Brains" drunk test. ( http://www.youtube.com/watch?annotation_id=annotation_183855&feature=iv&src_vid=-0MXU3J6Qbs&v=unseSFWjuqs ) and will post a video doing so as soon as he accomplishes this feat! Love the thyme and KOKO!!
I do not have any changes to add to my story at this time!
September marks 27 years! 9,855 days since I was told the GBM in my head would kill me in three months. In that time, I have seen my primary neurosurgeon retire, and two months ago my neuro-oncologist at UCSF stepped down from his clinical practice to focus solely on research from which all GBM patients will surely benefit as he is quite brilliant.
My circumstances remain mostly unchanged from my last update. This anniversary date in September is always bitter sweet as no sooner is this date past than I am atop a very painful one – the date of my much loved and great friend David M. Bailey's passing in October, 2010.
As many know, David was a 14 YEAR survivor of GBM. His amazing story of hope (davidmbailey.com) brought inspiration to thousands around the globe. He was a prolific songwriter and wrote many songs that continue to inspire those of us walking the brain tumor journey. He toured relentlessly sharing his hope. If you are newly diagnosed, I encourage you to tap into David's music for inspiration; CD's are available online, or visit itunes. His message is that hope abounds and encourages us all to love the time - the good and bad. Even when we are hooked up to the chemo or laying in the MRI tube there are things for which we can be thankful. Ultimately his wisdom shines through when we live life to the fullest everyday and enrich the lives of others. In that way, we all win no matter what the calendar says. Whether we have days or decades ahead, no one can rob us of our passion for living. Hallelujah! We got One More Day!
I have nothing new to report so here is some background information on interstitial brachytherapy for GBM:
Stereotactic brachytherapy involves the accurate placement of radioactive isotopes (usually I-125) within brain tumors -- only 20-30% of patients with glioblastomas are eligible for brachytherapy. Several studies have shown a better survival for patients with primary GBM treated with a brachytherapy boost, in addition to external beam irradiation, instead of just radiation therapy alone.
In my case, my young age of 17 certainly was an important effect on survival. In addition, there is a pattern for patients who underwent reoperation for symptomatic necrosis at the implant site. Those requiring this reoperation survived significantly longer. There is a belief that reoperation is well tolerated in most patients in whom symptomatic necrosis develops and results in faster clinical improvement, lower steroid requirements, and improved quality of life. I required the necrosis surgery as did approximately 3 of every 5 GBM patients treated with brachytherapy.
It is also interesting to note that amongst GBM patients who had clinical characteristics making them eligible for brachytherapy, they lived significantly longer than those who were ineligible for brachytherapy.
P.S. You might enjoy reading my story in the IBTA magazine Brain Tumour this month.
Many of the inquiries I receive are focused on how I am now. My current status is alive and thriving. I do have some neurological deficits primarily with short-term memory, aphasia, balance, some vision issues and a few others. Unlike Billy Ray in Trading Places I am not a karate man that only bruises on the inside, still I am blessed. These are inconveniences at most and do not greatly impact my QOL unless I let them. You just gotta KOKO.
I recently learned that my first NS -- John Hered, MD -- passed in October, 2016 after a career practicing neurosurgery for over 30 years. I hadn't seen him since his retirement in 2005. John advocated for me and saw to it that I received treatments that promised me quantity as well as quality of life.
September, 2017 saw a milestone 3rd decade of survival for Matthew. He has extended his survival to 30+ years in the absence of hope. There were few medical professionals that provided Matthew with any encouragement that survival was an option. Yet, hope is critical to surviving a gbm. One such person who can help you with that hope is 14-year gbm-survivor Greg Cantwell of gregsmission.org . Greg's calling is to provide one-on-one support to brain cancer patients and their caregivers. He provides free guidance as a lay person. He was honored as a 2015 gbm hero by Cure Magazine as a person that excels in efforts to raise awareness and education in gbm. Perhaps he can help you in your journey with gbm as well so you too can KOKO!
I just recently reached my 33rd year of survival in early Sept., just days after the passing of my father to
pancan. He was my advocate, caregiver and rock throughout this gbm journey. I've lost close friends to
gbm, but this hit harder. It was a bittersweet remembrance of that day they cracked open my skull.
Dad's passing has also spawned a new independence on life and I am excited at what lies ahead as I
KOKO (Keep On Keepin' On).
Otherwise I continue to be tumor free in remission; I am still required to take some epilepsy meds. My
mind is not as sharp as I'd prefer and there are some cognitive deficits I live with but NO worries, right?!
I have no complaints and choose to KOKO. Hope Lives if you learn to love the time.
I want to conclude with a shout out to a dear friend, Sharon Lamb, RN. She is a well known retired
neuro-surgery nurse at UCSF. She has been quite supportive of my family during the last couple of
months and I am so appreciative of her. I hope people remember nurses in their journey. They are
some of the greatest people that care for us. I hope you will be able to connect with a lifelong nurse
friend like I did with Sharon as you fight your gbm.
My situation neurologically is pretty much unchanged in terms of disease. September will be 34 years of survival which will be my 66/33: That is to say, 2/3 of my life lived post-dx and 1/3 pre-diagnosis.