Last updated: 8/20/2007
(7/29/02) Click HERE to read Matt's guide to brain tumors
WOOOO-HOOOOO!!! I have now survived a glioblastoma multiforme (grade 4) tumor for TWO decades, baby! One radiologist told me point blank I had 3 to 6 months to live… phooey.
In September 1987, a senior in high school, Matthew, 17, began experiencing headaches with nausea upon waking. Diagnosed with a glioblastoma multiforme (gbm), in the right frontal lobe, a radiologist gave Matthew up 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. (Bummer…..since the cisplatin would have assuredly left Matthew blind.)
Matthew's neurosurgeon (Dr. Hered), who focused on providing Matthew with both quantity & quality of life, then 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.
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. Thaddeus 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 neurosurgeon (Dr. Hered) retired. During Matthew’s final examination, Dr. Hered 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.
Matthew continues to advocate for other brain tumor patients-survivors, and now works with persons with epilepsy to help ensure they have the full range of treatment options available to them.
Keep On Keeping On!!
It is an honor to have my story included with so many incredible survivors.
