Bio of Susan Edwards My mother is now 49. Last year in February of 2004 at the age of 48, it was discovered that my mother has a tumor in the left side of her brain. Her early symptoms were sudden inability to recall names and objects, and slowly she began to lose feeling on her right side of her body, and actually could not move her arm and leg. The tumor was removed on February 6, 2004 and classified as GBM grade IV. She completed radiation in April, and began chemo. They started her with BCNU intravenously, however, after several rounds, discontinued this therapy as her blood counts became so low that they had to wait longer and longer in between sessions. In November they started on the oral temodar. In February, 2005, one year after her initial diagnosis, it was discovered that the tumor was regrowing. It is now 1 inch by 2 inches long, and they have scheduled her for another surgery on March 11, 2005. At that time they will also implant the chemo wafers and now she is taking the temodar every day instead of the 5 days per month. Please keep her in your prayers. My mother has a tremendous spirit and I know she will pull through this in some way. Thank you. Marleen

In September of 1998 I was diagnosed with Glioblastoma Multiforme. My story is as follows. Prior to my diagnosis I had graduated film school in San Francisco and moved back down to Southern California where "the work" is. For the first six months I temped in the hellish world of the Entertainment Industry and lived with my grandparents in Long Beach, California. By May of 1998 I got my first steady job in the industry; office production assistant for a documentary production company which produced programming for The Discovery Channel and The Learning Channel. Although grossly underpaid, I loved my work which was at the level of Associate Producer. I was finally on the road to success. By September I had saved enough money to move out of my grandparents home into a tiny studio of my own. It was dark and small, but for the first time I was going to have my very own place. No roomates! Two weeks prior to moving in I had developed a persistent headache. I was popping Tylenol like candy. I was never one to have a headache, so this was quite surprising. I blew it off as stress and continued to work and prepare for the move. A week prior to the move, my parents purchased a lamp and table and chairs for my kitchenette. I recall being very lethargic and dizzy each time I stood up around that time. Once again, I blew it off to anxiety and stress from the move. The week of the move, the U-Haul truck reserved, my grandma's kitchen cleared of extra utensils, pots and pans, my headaches continued and my right eye became blurry. But this time I thought I had it all figured out. "It all made perfect sense," I told myself. "I've been wearing an old pair of prescription glasses with a scratch on the right side. The old prescription was giving me the headaches and the scratched lens was giving me a blurry eye." On the advice of my grandmother, I took a "half day" off of work to go to her opthamologist for a "new prescription." Little did I know the "new prescription" was about to become the least of my worries and the "half day" off work would be the last day of my employment with this particular company. Once at the opthamologist's office, I was whisked away to the usual eye testing room, reading the big "E" on the chart and testing many lenses for my own prescription. I knew the day and my life had taken a sudden turn when the doctor shone his miniature flashlight in my eyes and said, "Uh, oh." Yes he literally said "uh, oh." "Bad prescription needed, right doc?" I was nervous as ever. "Just have a seat Scott, I'll be right back." It was the longest wait of my life. When the doctor returned, he said, "we need to get you to a hospital right now." My mother was called from work and took me to Harbor UCLA hospital at the advice of my opthamologist who knew I didn't have health insurance. The place was creepy, but we ended up staying. After a few hours I took a CT Scan. I waited for my results and distinctly remember a group of doctors approaching me in what felt like slow motion. The doctor leading the group had a tragic look on his face. He did not allow for any cushion. "We are sorry to tell you, you have a mass in your brain which looks like a tumor." Instantly I thought, "no big deal, with modern technology they'll probably just zap the sucker." The "C" word never even crossed my mind. The next two weeks were a blur. Monitoring in ICU, Surgery, and recovery. Prior to surgery my surgeons informed me only 50-60% of the tumor was operable. The rest is on the corpus callosum. If this area was operated on I would not be typing this today. A tennis ball size tumor was removed from the right frontal lobe of my brain. A few days after surgery I discovered it was malignant and called an Astrocytoma. The grade or aggressiveness was to be determined by pathology. I was told it would be a grade 3 or 4 on a scale of 1 to 4. By the end of the week I was told I had a four. I figured I'd always been an overachiever, I might as well get the most aggressive brain tumor possible. Soon enough I found out that because my Astrocytoma was a grade four I got a special name for it. Glioblastoma Multiforme or GBM for short. That was September of 1998.

Hi, My name is Sharon Jeffries and I'm from England. I am divorced with 2 teenage children and used to work as a college lecturer teaching IT. I am 34 years old and was diagnosed with GBM in October 2000. I have had one operation, a full course of radiotherapy and now have to make a decision about whether to have a course of chemotherapy. I am feeling quite well at the moment but my latest scan showed that the tumour has started to grow again (hence the chemo decision). Any comments on other peoples experience of chemo would be appreciated ('cos I'm a bit scared). I think the drug I would be taking is PCV - has anyone heard of it? I'm trying to stay positive but as you will all appreciate, staying positive isn't always that easy!

4-9-06 Hi everyone, My name is Janet and I was born 8-9-78. My journey with having a brain tumor began in 2000. At first I was misdiagnosed with Multiple Sclerosis. I knew something wasn’t right so I went for a 2nd,3rd and 4th opinion. Everything pointed to an inoperable glioma in my brainstem. I didn’t know what was better. Having MS or an inoperable brain tumor? That was only causing loss of my handwriting skills in my right hand at the time. I got on with my life. Graduated college, got an entry-level job. In 2002, they (Sloan-Kettering) in NYC had had me on a wait and watch approach but in 2002 more symptoms started to show up like weakness, double vision and more of a hand tremor. The next step was 6 weeks of radiation. After 6 months I felt good and returned to work. In 2004 symptoms came back and the next treatment was Temodar. I handled that well and even went back to work while still on it back in August 2005. I left work the end of February 2006 because symptoms were really bad. I had 15 rounds of Temodar but numerous tests showed my tumor had grown a little also in my cerebellum and my body became immune to the Temodar. The next step was to take BCNU intravenously. They only gave me several options and I went with 1 treatment on March 9, 2006 because I felt I had no other choice. I had a weird feeling about taking it. They told me it grew but never into a GBM. A week later I went to see a top neurosurgeon at NYU just to get another opinion. I had seen him at a Brain Tumor Awareness Day event and was really impressed by him. To make a long story short, he didn’t understand how Sloan could possibly treat me when the last biopsy I had was in 2002 and he couldn’t believe they were treating me with chemo from 1976 that has only a 20 % success rate. There are so many options now and tumors can change their cell form over time. 2 weeks ago I had a biopsy and the pathology report showed it got aggressive and is now a GBM grade 1V. I start a new treatment on April 26, 2006 . I have to wait a few weeks to get that 1 treatment of BCNU out of my system. It hasn’t been an easy journey especially being so young but I remain positive and refuse to give into this beast. I am so glad I found this website! It is filled with positive energy and that is exactly what everyone going through this needs. Thank you! If anyone ever needs to talk, vent, etc..please e-mail me Sincerely, Janet Matrochano

My name is Melissa Mariman. I am 30 years old. I am an anesthesiologist and I just finished my residency training in Southern CA the end of Feb 2004. Finally I was able to move back to the Seattle area so my husband and I could stop commuting. As a gift to myself I took some time off between residency and starting work. I took my mother on a trip to London the first part of April 2004. This is really the only tip off that something may be wrong. It was a cold day there and my hand was a little numb. I had trouble turning a knob on the faucet with my left hand. My fine motor coordination just seemed a little off in that hand. Other than that, the only symptom I had had were some mild recurrent headaches that were relieved with Advil. What resident that works long crazy hours doesn't get a headache now and then???? When I returned home from London I saw a hand surgeon I knew, and followed up with a neurologist to rule out carpal tunnel. As for my mild headaches, they thought maybe the start of migraines ( I did fit the profile)--but they just weren't that severe. After nerve testing, they found a 25% decrease in function of my radial nerve in the left hand. I'd probably slept on it weird, but to come back if it wasn't better in a few weeks. On Friday, June 25, 2004 I worked a full day doing anesthesia with no problems. The next day, Saturday, June 26 I woke up with a headache and just didn't feel well. It was a warm day and I threw up on the way home from the store. That night I gave myself something for the nausea so I could at least get some sleep. The pain was moderate, but not incapacitating. Monday, June 28 I called my primary MD and told her I thought I was having my first true migraine. She saw me at 10 am and had me in the MRI by 12 noon. As I was coming out of the MRI the tech came and got me to take me to the radiologist that was waiting with my husband in the dark room. That is when they told me that I had a right parietal tumor. It really wasn't a surprise to me because it all just made perfect sense in my medical mind. I was whisked off to the ER where I met the first neurosurgeon. He told me it was inoperable because of the location on the motor strip.They could do a biopsy, but that was it Thankfully my primary had set up an appointment with an oncologist, When the oncologist asked me what the surgical option was, I said there wasn't any. She excused herself and told me I had an appointment in one hour at U of WA with someone who only does brain tumors. Thursday July 8 I had surgery via extensive MRI mapping to remove the tumor. It has been classified as a successful gross resection of the tumor. I spent a couple days in ICU and went home July 12. At my post op check July 14, I found that they had presented me at tumor board that day. The path report was just as we thought it would be--- GBM Grade 4. My surgeon told me that I had an appointment downstairs right now. with the neuro-oncologist and the radiation oncologist. I was given my treatment options and set up for all the imaging studies to start radiation, I start chemo( Temodar) and radiation treatment Thursday July 22 for a six week course. My utmost thanks to the amazing team of medical professionals I work with--it has restored my own faith in medicine!!! And a super huge thank you and I love you to my family and friends---you guys are the ones carrying me through this!!!!!

" MY SISTER'S FIGHT FOR LIFE" -by Kelly Williams THE DAY WAS MARCH 20th 2002 when my sister Sandra Pierce had LEFT sided arm and leg weakness, impaired speech and severe fatigue..her cat scan and mri showed a large mass or tumor on the right temporal area of her brain. after the devistatingn news had finally sunk in , she was referred to the neuro surgeon on call, who then referred us to the surgeons at the uw on 3-25-01. who once again confirmed she had a brain tumor..sandra had no medical coverage and was advised that the uw wanted to repeat her mri but could only do so if she paid cash up front or had insurance. this was very devistating to her and our family. it's now two weeks after her diagnosis with her symptoms worsening. having faith in god and the power of prayer a full body workup was set up for 4-4-02, not soon enough, her symptoms worsened and on 4-2-02 she relapsed and was transported back to providence er where they did a repeat catscan and found that three weeks to the day her tumor had doubled in size, from the size of an egg to a tennis ball.. providence had her transported by ambulance to the uw. after a complete body workup her body was free of tumors so now we could proceed with surgery to remove this tumor. Surgery, 4-5-02 resection of 85% was removed and 10% to 15% had to be left as it involved her left side and resection would have paralized her.. surgery went well and Sandra had minimal weakness with her left arm and les along with some speech impairment, hopeful that rehab would help her.we were now waiting for the path report. we were all very hopefull that the tumor would be benign. two weeks later with a pre-op dx of glioblastoma multiforme it was true stage 4 and fatal..not once did our faith in god nor our familys love and hope leave us. SANDRA'S SYMPTOMS WERE BEGINING TO WORSEN 2 WEEKS AFTER SURGERY AND RADIATION TREATMENTS WERE NOT TO START FOR ONE MORE WEEK. finally radiation TREATMENTS began and on treatment 5 things were not good she became SEVERly NAUSEated, DEHYDRATED AND couldnt keep anything in her stomach. SANDRA WAS TAKEN BACK TO THE UW er dept. via medic transport where DOCTOR'S GAVE US LITTLE to no hope.and possibly 6 WEEKS left with us.faith is very powerful when you believe combined with an unconditional love from family and friends which brings the hope of another chance, a new day,and the will to live, as we told the doctors how wrong they were she confirmed us all and came home two days later.. the tumor had come back bigger than before her surgery and once again our faith was tested. the plan now was to increase radiation to max dose decreasing the weeks from 7 weeks 5 days per week to max dose at 10 visits.she also received her first of 8 chemo treatments. sandra was released to go home 5-10-02. she is holding on in hopes that her faith with alternative medicine and her willto live will endure. withour family's strong faith in god ,the power of prayer,, and the love and forgivness of our lord and saviour jesus christ, in a world of terrorism, starvation, & terminal illness, faith hope and love , gods medicine will over come all.. god has brought so many angles our way, full of love, hope,& the true meaning of compassion and the power of the human spirit. benifits are begining june 1st with a car wash at the blue yonder at silver lake,, maddog's ruthless ride against cancer a benefit run for sandra june 29th leaving the blue yonder 10am, and the sandra pierce medical fund set up at wells fargo bank marysville or any local branch with all proceedes going toward saving sandras life..no medical coverage and diagnosed with glioblastoma our family's faith continues to grow stronger every minute as god continues to bless his angles upon our family ...........his angles are all of you!!! as our family's prayers continue to be answered, our greatest hope of all is that sandra will be one of god's miricle stories, and a survival story of glioblastoma multiforme a fatal brain tumor that lost. A special thank you to all who have taken time out of their lives to create the flyers, contact the sponsers, set up a fund account, and cordinate the car wash and benifit run for the love of sandra. to all sponsers and to every heart that has given or contributed,this is one family that will forever be grateful to you all, as our prayers are being answered. our greatest thanks belongs to god who has been there for us completly...........Amen! To our own very special guardian angle who found an alternative medicine which in two days has helped sissy to eat her first meal after not eating for 6 weeks, god blessed us with you uncle stretch, with all our hearts we love you. All our love , Kelly and Sandra

January 5, 2003 Statement If you have come to this page, you are due a pat on the back, for it is difficult to read the stories about lives impacted by Glioblastoma Multiforme. I myself have resisted telling my story in this way, and have only recently felt the impulse to do so. Now, though, I may write until I stop. I was diagnosed with GBM4 after a sudden grand mal seizure in February 2002. I was then a healthy 43-year-old with no prior symptoms save for a headache, and a recent mysterious vision anomaly. I am technically too old to be considered a ‘young adult’, but I feel a definite solidarity with the YASG and those that support it Ironically, when I was a healthy 22 year-old, I never thought I’d live to be 44. Now diagnosed as terminal, I intend to live to be 88, at least. Every situation is unique. I have been blessed with incredible support from my wife, friends, family and employer, each of whom have lived up to their stated values in ways unexpectedly beautiful. Since today I retain some of the faculties to contribute what I’ve learned, (if anything), so far, it is in no small part due to their extreme efforts, and I thank them, but can’t thank them enough. My case is one of a cluster of three, in lives that only intersect at a high school in Quincy, Illinois, in the years 1974-1976. A possible fourth case, an astrocytoma 3, intersects one of the GBM4s, just a little later, as a college sweetheart, years before the GBMs surfaced. I survive. If I were an interested researcher, I would have to think that there was a ‘clue’ in all that, somewhere. (No?). There may be more details, lost to me. Among the manifold challenges of the year, maintaining and developing certain character traits has been important to me this past year. One of the less-frequently noted is a sense of humor, perhaps because humor is so subjective. I must say though, that one must maintain a certain dichotomy of thought to reconcile the diagnosis with an intention of survival.(The word itself implies it’s opposite to me, therefore, I often call myself a GBM Liver).[Liver, like the organ]. For me, a lot has come down to the conventional wisdom offered to most healthy young persons. I would add, “Eat some ice cream”, ride the rollercoaster again, pick up an instrument. I certainly couldn’t see the horizon at all, when I was a healthy 22-year old. Now, I can’t get out of bed without almost tripping on the horizon. Heck, I may be 88 already, but I don’t think so. There is now and now. Nothing is definite. Nothing is indefinite. In fact, that may be the bulk of the wisdom ascribed to great age. I’ll let you know. You be there to hear it. David Ritter 01/06/03 http://home.earthlink.net/~mjoanneritter/

Liz Sciclunas life has been great, always healthy, full of adventures, friendships, travels and most importantly a supportive, loving family. She is 29 years old and has a wonderful boyfriend who she has known for almost two years now. She worked at Vonís supermarket as a checker and has made countless friends and appreciates each and every one of them. On February 10, 1999, Liz experienced a seizure and was diagnosed the next day with a brain tumor. Her craniotomy (brain surgery) was done at Downey Community Hospital on February 12 and revealed a Stage IV Glioblastoma Multiforme. Needless to say this has definitely changed her life around 360 degrees. She has received six weeks of radiation at Downey Community Hospital, followed by two weeks of boost radiation at UCLA. Her regular medications were tegretol, decadron, tamoxifen and accutane. She took other medicines for headaches, pain etc., in addition to her multivitamin and mineral therapy. She also has received physical therapy to improve her walking skills at Downey Community Hospital which is closer to her home. She continued her MRI's every six weeks at UCLA. Her surgical lesion did not heal well and on September 13, 1999 she went for a second craniotomy (UCLA) to remove an abscess that had developed. She began physical therapy three times a week and occupational therapy twice a week. Her lesion was still not healing after taking antibiotic therapy and receiving frequent wound care. She then received eighteen hyperbaric treatments which finally healed her lesion. Then on September 23rd MRI she found out the tumor was growing again so she discontinued her tamoxifen and accutane therapy and began a CPT-11 chemotherapy program at UCLA. After the first round of CPT-11 the tumor continued to grow. As a result, she discontinued the CPT-11 and began and oral chemo called Temodar. Her first round of this therapy showed that her tumor had not grown in size! She has just finished her second round of Temodar and feels good on this chemotherapy so far. She continues her regular medications as well but now is on neurontin in addition to tegretol to help prevent seizures. She is on Oxyear for pain and headaches. Liz has always been a very strong, positive person. She feels that this chemotherapy is preventing blood flow to the tumor and it will eventually shrink and kill the tumor. Her numerous family members all over the world, as well as her friends and family here have been very supportive of her and continually keep up their daily prayers for her progress. This is really helping her remain positive and hopeful that things will turn out well for her. composed by Liz's sister Miriam Matulich

My surgery was February 25/00. The tumor was discovered a couple of months of moving from Las Vegas. I had the new job. I had the new car for my job. During the coarse of operation , my eyes took a hit. I lost my left peripheral vision in both eyes. Driving is difficult. But, Im fighting. Im winning. The chemo nearly left a blank on my MRI Soon I will begin my hobbies. Fishing, motorcycles, big artwork . Im 31 years old so I know I have the power

Hello to all My name is Danny Yorke I have a glb brain tumor and would like to talk to other people my age and see how they are going. I am 35 years old and i have had my tumor for nearly 18 months, in that time i have had 3 operations, 2 lots of radiotherapy and are now on my 2nd lot of chemo drugs. my last o.p was on my throught which was extremly rare as glb are not suppose to spread from your brain down only the other way sometimes. So i have a lump and a vean taken out on my left side which leaves me with a big scar and a dent or impression. I still have tumor on my brain as they could not get all of it, i just have to wait to see how quickly it grows. My latest chemo drug is temozolomide which i have just started (4 days) so i dont know how it will go but i live in hope i have heard alot of talk about glevac/ glivac a new drug which is working well on lueciama patients. It was being trialed on brain tumors last time i looked into it but if any one knows something new please forward. Anyway hope to talk to someone soon as us ausies might have some tricks or secrets were hiding. Regards Danny Yorke