Fighters https://gbm4cure.webs.com/apps/photos/ Fighters https://gbm4cure.webs.com/apps/photos/photo?photoID=154875659 154875659 Robert Bailey Mystery author Robert Bailey had always wanted to write, but a busy career had made that tough. After twenty-five years as a private eye, Bob was injured on the job and spent a year in a wheelchair learning to walk again. During that time he wrote his first novel, Private Heat, which won a Josiah Bancroft award and was a finalist for a Shamus award for Best First PI Novel of 2002. Two more novels followed. Bob had just finished his first screenplay and was in the middle of his fourth novel when he began to have trouble reading and remembering words. The problems got worse over about two weeks, until he finally visited his family doctor. She sent him straight to the emergency room. An MRI revealed a 3.5 cm brain mass in Bob?s left temporal lobe?the area that controls speech and writing. This also explained the headaches Bob had been having. He?d been complaining about headaches for months. Who would have guessed they were this serious? Bob underwent a five and a half hour surgery on August 22, 2011, during which the surgeon removed over 95% of the tumor. The diagnosis was grim: GBM. He had to take massive doses of dexamethasone for brain swelling, which played havoc with his diabetes and caused some pretty impressive mood swings. But his ability to read and write slowly improved, as did his word-recall problem. Due to the poor prognosis and short life expectancy for GBM, Bob and his wife Linda started looking for clinical trials almost immediately. Linda found a clinical trial for a promising new dendritic cell vaccine, the ICT-107. In its Phase I clinical trial, 80% of the patients receiving the vaccine were still alive two years after diagnosis! But there was a problem with it?it was only offered in California. Disappointed, they kept searching and found a clinical trial practically in their backyard. VCU Massey Cancer Center had a trial that used valproic acid to make glioblastoma cells more responsive to radiation. Bob contacted VCU about that trial and was accepted on that study. In the meantime, Linda uncovered exciting news! The ICT-107 trial was opening at UVA that very month. But?Bob was already going to be on the valproic acid study. So, they did not pursue the UVA trial. Then, at the eleventh hour, the call came. Radiation would pass too close to the sensitive brain stem, and the doctors were afraid of causing brain damage if Bob took the valproic acid. So, Bob was dropped from the VCU trial. Linda emailed back and forth and called UVA like mad. It looked as if Bob would be able to get into the expanded ICT trial after all! But, another problem cropped up: A lot of prep work would need to be done prior to beginning the trial, which had to start concurrently with chemo and radiation. And chemo and radiation had to start no later than six weeks after surgery. And that date was rapidly approaching. After weeks of hard work, Bob got the call: the logistics couldn?t be worked out. If he?d made contact earlier, there would have been time, but now there wasn?t. Bob wasn?t eligible now for either trial. If you or a loved one has GBM, take this to heart and, if you are interested in clinical trials, find more than one and pursue each one full steam ahead. Exciting strides are being made, but getting into the trials can be trickier than it looks. Bob started standard radiation and chemotherapy with Temodar at the beginning of October. He expects to finish in mid-November and have his first post-treatment MRI around Christmas. So far he feels well except for radiation fatigue, and is lucky to have escaped some of the disabilities many GBM patients must deal with. Radiation, however, does cause brain swelling around the tumor site, and his old problems with difficulty reading and difficulty finding words are back again. Bob?s ambition is to finish at least one more novel, but getting back to that will have to wait until radiation is over. Until then, Bob keeps in practice writing a blog about his experiences for his author website. It takes him about twice as long to write a paragraph as it used to, and sometimes he hits a blank wall with a word he absolutely can?t come up with. He puts down something that?s as close as he can get to what he means, puts parentheses around it, and when his wife gets home she helps him come up with the right word. Bob?s blog can be found at his author website, robertebaileyauthor.com. You can also chat with him on facebook. Bob's Books are available in our Amazon Store. https://gbm4cure.webs.com/apps/photos/photo?photoID=154657573 154657573 Fighter Gene picking apples with his granddaughters- making memories. https://gbm4cure.webs.com/apps/photos/photo?photoID=155185564 155185564