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Name: Scott
Age: 43
Diagnosed in: 1999
Treatments: Surgery, radiation, hormone replacement therapy, and Humatrope (human growth hormone)
Tumor Type: Meningioma
Notes: Tumor on brain stem and cavernous sinus. Current good health; has hearing loss in one ear (may be from radiation). Sees an endocrinologist re: hormone production. Has trigeminal neuralgia. Update 2009: Had a second craniotomy, doing well besides double vision (that Drs say will subside) and 100% hearing loss in right ear. May be getting stereotactic radiosurgery (Cyberknife).
Medications: Somatropin (human growth hormone), Androgel (testosterone), Synthroid (thyroid), and Hydrocortisone (cortisol)
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Name: Lauren
Age: 25
Diagnosed in: 1993
Treatments: 2 surgeries; still seeking more treatments for weakness on right side of body.
Tumor Type: Cavernous Hemangioma
Notes: Had 4 leg surgeries because of right sided weakness.
Medications:
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Name: Erin
Age: 30
Diagnosed in: 2003
Treatments: Surgery
Tumor Type: Cysts
Notes: Epidermoid cyst located in brain stem, symptoms included vertigo and dizziness. Surgery was long, but successful with total resection. Completed physical therapy and currently has 90% hearing loss in left ear. She is married and works full-time in marketing.
Medications: Decadron, Percacet, Oxycontin
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Name: Marc
Age: 33
Diagnosed in: 1996
Treatments: 2 surgeries, chemotherapy (procarbazine), radiation
Tumor Type: Ganglioneuroma
Notes: Tumor located in right frontal lobe. First diagnosis found tumor to be benign, recurrence three months later was malignant. Has had 2 surgeries, allergic to Dilantin and generic Tegretol (Carbamazepine). Has follow-up MRIs every 9 months and does not have any physical or cognitive changes. Doing great!
Medications: Tegretol
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Name: Kathy
Age: 66
Diagnosed in: 1986
Treatments: Surgeries in 1986, 1990, 1996; fractionated radiation in 1997, surgery for shunt placement 2006.
Tumor Type: Meningioma-Atypical/Malignant
Notes: Malignant meningioma in cerebellum. Has experience with headaches and imbalance. She is a retired RN (disabled, 1987). Update 2009: has hydrocephalus, headaches, and ataxia, a shunt was put in in 2006. Used to have MRI's because allergic to CT scan contrast, but now the magnetism of an MRI can damage the valve in the shunt so she is back to CT's (without contrast).
Medications:
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Name: Winnifred
Age: 57
Diagnosed in: 1998
Treatments: Surgery
Tumor Type: Oligodendroglioma
Notes: Tumor was in left temporal lobe. Had 2 grand mal seizures and had side effects from anti-seizure drugs. Now is symptom-free, enjoying an active life and working full time.
Medications: Took Depakote; allergic to Dilantin
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Name: Randy
Age: 51
Diagnosed in: 2007
Treatments: 3 surgeries, 1st for hemangioblastoma in cerebellum, 2nd and 3rd for oligodendroglioma in right parietal
Tumor Type: Oligodendroglioma
Notes: Diagnosed with two low-grade tumors, oligodendroglioma in parietal lobe and hemangioblastoma in cerebellum. Very fit and active, had a general seizure out of the blue. MRI saw two spots and scheduled surgery for cerebellar tumor first, full resection. 2nd surgery for oligo was more complicated so first did a partial resection, then went to another treatment center for full resection using iMRI guided surgery. Had some left sided paralysis, physical therapy really helped. He is doing great, married, works full-time, swims a lot and enjoys yoga. He is, "hoping to help others battling this type of tumor".
Medications: Keppra, Trileptol
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Name: Randy
Age: 51
Diagnosed in: 2007
Treatments: 3 surgeries, 1st for hemangioblastoma in cerebellum, 2nd and 3rd for oligodendroglioma in right parietal
Tumor Type: Hemangioblastoma
Notes: Diagnosed with two low-grade tumors, oligodendroglioma in parietal lobe and hemangioblastoma in cerebellum. Very fit and active, had a general seizure out of the blue. MRI saw two spots and scheduled surgery for cerebellar tumor first, full resection. 2nd surgery for oligo was more complicated so first did a partial resection, then went to another treatment center for full resection using iMRI guided surgery. Had some left sided paralysis, physical therapy really helped. He is doing great, married, works full-time, swims a lot and enjoys yoga. He is, "hoping to help others battling this type of tumor".
Medications: Keppra, Trileptol
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Name: Ashley
Age: 30
Diagnosed in: 1999
Treatments: 4 surgeries, craniotomy, burhole evacuation. Tunnel shunt placement and removal
Tumor Type: Pilocytic Astrocytoma
Notes: Very little movement in left arm. Uses massage therapy for symptom management. Loss of left peripheral visual fields. Works as a Neurological Rehabilitation Social Worker. Update 2009: Doing great and celebrated her 10 year survivorship!
Medications:
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Name: Ed
Age: 39
Diagnosed in: 1996
Treatments: Chemotherapy (Temodar), radiation therapy
Tumor Type: Mixed Glioma
Notes: Oligo/astro tumor located in lower left hemisphere in occipital lobe. First MRI showed small tumor and thought benign, then biopsy showed oligo/astro mixed glioma grade II, in 2006 it graduated to a grade III found through biopsy. Actively surveying tumor growth and still on Temodar, Keppra, and Lamictal. Family supported him through the process and has one daughter. Takes exercise and diet more seriously and needs a 2 hour nap everyday. Update 2009: Taking Temodar for 3 1/2 years and tumor has shrunk by 1 cm.
Medications: Keppra, Lamictal
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Name: Jeff
Age: 57
Diagnosed in: 1996
Treatments: Surgery, chemotherapy, radiation therapy
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor located near motor cortex, participated in clinical trials, gets MRI every three months, currently a support group leader. Still experiences migraines. Stays fit, acupuncture, meditation, yoga and exercise.
Medications: PCV (BCNU and Vincristine), Carboplatin and Thalomid, decadron
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Name: Joseph
Age: 50
Diagnosed in: 2005
Treatments: 2 surgeries
Tumor Type: Oligodendroglioma
Notes: Tumor in left temporal lobe; had a very negative experience with 1st surgery including mis-diagnosed pathology, went for second opinion and 2nd surgery with a different neurosurgeon and now receiving excellent care; has other medical issues including diabetes and systemic degenerative arthritis; now semi-retired, worked for over 20 years in mental health and human services.
Medications: Keppra and Trileptal
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Name: Josh
Age: 32
Diagnosed in: 2004
Treatments: Surgery
Tumor Type: Oligodendroglioma
Notes: Left frontal lobe tumor; grand mal seizure led to diagnosis. Had difficulty with speech/language immediately following surgery; has improved with time. Still has occasional word-finding difficulty and perseveration (persistence of a single thought). Has 1p19q deletion. Doing well now, works full time; married with 2 sons. Update 2009: Had another seizure in May 2009 and found the tumor was growing. Now treating it for the next 12 months with Temodar and is "feeling pretty good considering".
Medications: Keppra
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Name: Katie
Age: 28
Diagnosed in: 2007
Treatments: Surgery, chemotherapy (Temodar), radiation
Tumor Type: Anaplastic Astrocytoma
Notes: Grade III tumor located in left temporal lobe, diagnosed after focal seizure at age 25. Currently gets an MRI every 4 months, works full-time, and has since been married. She believes a sense of humor and positive attitude can be some of the best medicine.
Medications: Keppra
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Name: Nancy
Age: 53
Diagnosed in: 2003
Treatments: 2 surgeries, stereotactic radiosurgery (Gamma Knife)
Tumor Type: Meningioma-Atypical/Malignant
Notes: First tumor in 2003 in tentorial region. Vomiting, falling down, vertigo, got a CT scan and saw tumor on meninges. Sent to ER and had surgery. Surgery went really well, she prepped by nutrition, meditation, and swimming. In 2006, saw another tumor in sub-occipital lobe, kept an eye on it and it grew so surgery again. In 2008 saw a "dot" in cerebellar region, did Gamma Knife, she did not like the frame and had a lot of fatigue after. Feels really good now with some slight fatigue and a mild stutter. She wants to, "offer hope, encouragement, and support to others".
Medications: Decadron (varying doses)
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Name: Randy
Age: 27
Diagnosed in: 2005
Treatments: Three surgeries and stereotactic radiosurgery
Tumor Type: Other
Notes: Central neurocytoma, located in left ventricle, pushed on optic nerve and blocked CSF. Had three invasive surgeries to debulk tumor and one stereotactic radiosurgery. Stayed in hospital for three months for surgeries. Had trouble walking/talking. Took a break from college during treatment, but is now working full-time and taking classes. He has some memory loss, but no real fatigue and has learned the ability to recognize his limitations. MRI every year and is hoping to move it a year and a half.
Medications:
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Name: Liz
Age: 30
Diagnosed in: 2008
Treatments: 2 surgeries, lumbar puncture, chemotherapy (Temodar)
Tumor Type: Astrocytoma
Notes: Tumor in left parietal, low grade, grand mal seizure, rushed to ER. CT scan saw 2 masses and surgery was scheduled; second opinion suggested no surgery but to watch in case MS. Sent home with anti-seizure meds. MRI showed one mass grew, total resection, biopsied as grade II. Next MRI showed growth, maybe first time a sampling error or upgraded (grew back so fast). Second surgery still showed grade II; now treated as grade III. May 09 MRI looked good. Partial seizures are the hardest part. Second surgery left her with minor sensory loss in right side and balance issues; physical therapy helped. She "hopes her experience can help others".
Medications: Keppra, Depakote, Ativan
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Name: Tina
Age: 40
Diagnosed in: 1990
Treatments: Surgery, radiation therapy
Tumor Type: Ganglioneuroma
Notes: Diagnosed with epilepsy in high school, in college started working for Disney, seizure frequency increased so went to a neurologist. MRI showed tumor in left temporal lobe. Kept an eye on it and tried other seizure meds, but did not help. Had surgery, tumor found to have astrocytic tendencies, worked/danced all through treatment. Upset by hair falling out. Doing great, has worked for Disney for many years and she "knows how important it is to have positive thinking".
Medications:
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Name: Brenda
Age: 43
Diagnosed in: 2007
Treatments: Surgery, radiation therapy, chemotherapy (Temodar)
Tumor Type: Anaplastic Astrocytoma
Notes: Diagnosed with MS in 2000, MRI showed "plaque" in left frontal lobe that was growing, did biopsy and it was tumor. She had surgery in 2008 followed by radiation and Temodar. Did well with chemotherapy with the help of Zofran. She practices visualization, meditation, and prayer. She is married and is involved in 3 different support groups/services. She believes that others should "never give up hope" and "keep positive thinking".
Medications: Keppra
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Name: Cheryl
Age: 42
Diagnosed in: 2000
Treatments: 3 surgeries (1 standard and 2 awake craniotomies); radiation and Temodar (ongoing)
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in left temporal lobe, found inside of an AVM (very rare). Participated in clinical trial involving radiation treatments; and currently takes many herbal supplements. Has experienced three recurrences (04, 07, 09) and has occasional word-finding difficulty, no major deficits. Quit her job as a wildlife biologist to be a stay-at-home mom with two young children; has an active lifestyle. Has written a book about her experience.
Medications: Kytril, Compazine, Ativan
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Name: Peter
Age: 66
Diagnosed in: 1994
Treatments: Surgery, radiation, chemo (PCV)
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Retired and doing well, he is active in support groups and braintmr listserv. He believes that support systems are a mus and has participated in a group about long-term survivorship. Peter is a 15 plus year survivor and "is still going strong".
Medications:
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Name: Phyllis
Age: 48
Diagnosed in: 2005
Treatments: Radiosurgery (Cyberknife)
Tumor Type: Acoustic Neuroma
Notes: Tumor on left side, received SRS fractionated over 5 days in 2006, is her own advocate and believes very strongly in a patient-centered point of view. She also volunteers for other organizations as a support person. She has some mild hearing loss, feeling of "wonky head", and mild tinnitus. She believes every patient should become the most informed patient that you can be and wants to "share the knowledge".
Medications:
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Name: Randall
Age: 46
Diagnosed in: 1997
Treatments: Biopsy, radiation therapy (Peacock IMRT) for four weeks
Tumor Type: Astrocytoma
Notes: Low grade, in left parietal (motor strip), noticed right food dragging after busy day working in restaurant business. Orthopedist suggested neurologist, scan showed tumor. Had biopsy, was very active, then 4-7 days later had a massive hemorrhage, felt "waves of electricity through body". Needed extensive PT/OT. Struggles with seizures, having surgery in Fall 2009 to investigate. Has a dropped right foot, able to be very active with biking. MRIs every 6 months, married, has 2 young boys, and works full-time in Real Estate. He has "learned what he can and can't do" and that it is important to "get out there and be active".
Medications: Phenobarbital, Dilantin, Keppra, Depakote
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Name: Richard
Age: 44
Diagnosed in: 2002
Treatments: Surgery, radiation therapy, chemotherapy (Temodar, CCNU, Celebrex, CPT-11)
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in right frontal lobe, thought really bad headaches, CT scan showed tumor (couldn't have MRI due to pacemaker). Immediate surgery in GA then referred to Duke. Temodar first, then CCNU, saw some "hot spots" so did a clinical trial: CPT-11 and Celebrex. Went well, then did Temodar again for 1 yr. Now gets neuropsychological evaluation once a year at Duke and CT scan at home every 6 months. Has had focal seizures. Has three kids (14, 12, 9), married, and is a busy dad who also volunteers with a camp for kids with severe illnesses and disabilities.
Medications: Keppra, Lamictal, Nexium
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Name: Steven
Age: 55
Diagnosed in: 2005
Treatments: 2 surgeries, reconstructive skin graft, shunt, and radiosurgery (Gamma Knife)
Tumor Type: Meningioma
Notes: Tumor in frontal lobe, mistaken as a bad sinus infection, CT showed tumor the size of thumb nail. Has some STM and LTM loss that his family calls "memory deleted". Works full-time for AAA in call center and notices concentration decreases as stress increases. Notices that the Support Network has started more conversations with others in his life. Wrote a piece in the AAA "Jump Start" regarding his experience. Looking forward to being a support for others.
Medications:
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Name: Paul
Age: 50
Diagnosed in: 2004
Treatments: Surgery
Tumor Type: Meningioma
Notes: Tumor in sagittal sinus, originally lost vision in one eye and MRI showed tumor. Knows that the tumor has changed him, that he is "not the same person he was". Feels lucky, struggles with multi-tasking and sometimes feels "scattered". Is a graphic designer and owns a printing business and stationery store. Interested in a career change, either with counseling or social work regarding brain injury. Married and has two grown children and is hoping to "help in anyway possible".
Medications:
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Name: Jennifer
Age: 34
Diagnosed in: 2007
Treatments: Surgery, radiation therapy (7 weeks)
Tumor Type: Hemangiopericytoma
Notes: Always had severe headaches, but then they stopped going away, had a seizure and didn't realize it. MRI showed large "lemon size" tumor in right temporal lobe. Lost hair in radiation therapy and had some short-term memory loss. Hopes to "help others by decreasing fear and letting them know they are not alone". Still has bad headaches, works as nurse (RN) and is happily married.
Medications:
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Name: Louise
Age: 47
Diagnosed in: 1992
Treatments: Surgery (awake craniotomy), radiation therapy
Tumor Type: Anaplastic Astrocytoma
Notes: Tumor was located in left temporal lobe, worked as a sea merchant for many years, had a grand mal seizure aboard a ship while sleeping. Surgery at UCLA after biopsy. Initially fine with idea of surgery until she found out she was going to have an awake craniotomy. Experienced very painful brain swelling right after surgery that morphine alleviated. Happily married, still has some "word salad" and notices she's not as "quick tongued" as she used to be. She loves to travel and hopes to encourage a positive spirit for others.
Medications: Dilantin
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Name: Lorraine
Age: 52
Diagnosed in: 2006
Treatments: Chemotherapy (Temodar), stereotactic radiosurgery
Tumor Type: Brain Stem Glioma
Notes: Originally diagnosed with pituitary tumor in 1989, later diagnosed with brain stem glioma in 2006. First noticed leg dragging & talking out of one side of her mouth. Started treatment, health severely declined, spent months in two separate subacute care facilities and hospital. Lots of rehab helped to make enormous strides, has some left-sided weakness. Believes having hope is the most important and sees life as more precious. She also writes poetry and believes that laughing each day is just as essential as chemo/radiation!
Medications: Synthroid, hydrocortisone
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Name: Rory
Age: 37
Diagnosed in: 2004
Treatments: Retrosigmoid surgery (uses a microscope and the skull opening is made closer to the ear in order to minimize brain retraction)
Tumor Type: Acoustic Neuroma
Notes: Tumor on left 8th cranial nerve, misdiagnosed a few times before final diagnosis. Tumor caused vertigo and nausea. Once diagnosis was reached she received a second opinion and decided on retrosigmoid surgery. Has found acupuncture to be very helpful and believes a positive outlook is important . Has no hearing loss and currently works, is a student, and sails all over the world.
Medications:
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Name: Tom
Age: 57
Diagnosed in: 1999
Treatments: 3 surgeries, radiation, SRS, Gliadel Wafers, BCNU
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in right parietal lobe. Had recurrence 2 years after diagnosis, and suspected recurrence (turned out to be scar tissue and radiation necrosis) one year later. Has minor loss of peripheral vision on left side, no other deficits. Had low WBC counts, switched anti-seizure meds a few times, is now stable. On 6-month MRI schedule, feeling well, working full time. Married with three young adult children. Doctors have told him that he is "cured".
Medications: Currently takes Keppra; tried other AEDs
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Name: Neva
Age: 24
Diagnosed in: 2005
Treatments: Surgery
Tumor Type: Hemangioblastoma
Notes: Tumor attached to a cyst, located in right occipital lobe. Originally thought it was a sinus headache and was given pain meds for pressure headaches. An MRI revealed a marble sized tumor attached to the cyst and decided on surgery. Had some mobility and cognitive issues right after surgery with no side effects today. Tried acupuncture and herbal medicine, but they made her nauseated. Currently, she is a full-time college student with a double major in molecular biology and psychology.
Medications:
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Name: David
Age: 47
Diagnosed in: 1979
Treatments: Surgery, shunt, radiation. Alternative Medicine: yoga, meditation, biofeedback
Tumor Type: Germinoma
Notes: Tumor in pineal region, diagnosed at age 17. Had seizures, migraines for several years. Alternative Medicine helped. Feels he would be helpful to a teen/parent dealing with this illness.
Medications: Decadron, Midrin
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Name: Kevin
Age: 55
Diagnosed in: 1992
Treatments: 4 surgeries, chemo, radiation, clinical trials
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in right temporal lobe. Was the 5th human to receive gene therapy for a brain tumor (trial in 1993). Has partial paralysis on left side and has mild memory issues. Doing well and enjoys spending time with his family.
Medications: Currently: Dilantin, Mycelin, Tegretol, Depakote
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Name: Chelle
Age: 40
Diagnosed in: 1998
Treatments:
Tumor Type: Oligodendroglioma
Notes: Diagnosed while pregnant, delivered her daughter and began treatment 2 weeks later. Doing well now.
Medications:
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Name: Paul
Age: 41
Diagnosed in: 1998
Treatments: Surgery in 1998, and again for recurrence in 2006
Tumor Type: Mixed Glioma
Notes: Tumor in right temporal lobe. He has not had problems with seizures, but has been taking Dilantin since 1st surgery. Had recurrence in 2006 and another surgery. He returned to work 4 weeks after surgery and is doing very well. He has an active family with two small children. He has a great sense of humor and wants to help others who are going through this type of experience.
Medications: Dilantin
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Name: Walter
Age: 48
Diagnosed in: 2000
Treatments: Awake Motor Mapping surgery (6 hours), 6 rounds of external beam radiation, 6 rounds of BCNU.
Tumor Type: Anaplastic Astrocytoma
Notes: Tumor located in the parietal lobe against the nerve strip. Had 4 seizures in 5 hours (leading up to initial diagnosis). Had anxiety after surgery, difficult recovery. BCNU made him very sick- low blood counts, extreme stomach upset and fatigue. Recovered fully, and now works full-time.
Medications: Took Dilantin for 3 years.
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Name: Kristen
Age: 24
Diagnosed in: 1998
Treatments: Surgery, Ommaya Reservoir (which will receive regular maintenance for the rest of her life)
Tumor Type: Craniopharyngioma
Notes: Diagnosed at age 13 after many years of symptoms, tumor located near pituitary/hypothalamus (has had problems regulating hormone levels). Still sees her medical team on a regular basis and is considering Gamma Knife treatment in the future (1st surgery didn't remove all of the tumor). She works, and is also in school studying Cognitive Neuroscience.
Medications: Has taken Human Growth Hormone
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Name: Mark
Age: 41
Diagnosed in: 2007
Treatments: Surgery, IMRT radiation, Temodar
Tumor Type: Oligoastrocytoma
Notes: Tumor located on primary motor strip (right frontal lobe). Had a craniotomy, but 0% resection because of location. Has had seizures, now under control with meds. Still taking Temodar; side effects managed with Zofran. Is doing well, no deficits. Works full time; is married with two young children.
Medications: Lamictal, Topomax, Zofran
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Name: Teresa
Age: 41
Diagnosed in: 2000
Treatments: Awake craniotomy, radiation and many chemo drugs: BCNU, CCNU, Temodar, Vincristine, Procarbazine, Cisplatin, Irinotecan, Tamoxifen, Thalidomide
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in left frontal lobe, tangerine-sized. Has short-term memory loss, and word-finding difficulty. Side effects from chemo drugs include tinnitus and change in hormone levels. Developed AML (acute myelogenous leukemia) in 2008; a rare, but serious side effect of chemotherapy treatments. Is currently undergoing treatment, but is doing well. Is married with two teenagers.
Medications: Decadron, Zofran, Promethazine, Zoloft, Celebrex
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Name: Lisa
Age: 39
Diagnosed in: 2004
Treatments: Craniotomy, stereotactic radiosurgery
Tumor Type: Meningioma
Notes: Had a long, difficult recovery after surgery. Sensitivity to light, ringing in ears, other complications. Had very negative experience with health-care team. Willing to give advice regarding dealing with difficult doctors. Had a recurrence in 2007.
Medications:
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Name: Pamela
Age: 56
Diagnosed in: 1996
Treatments: 2 surgeries, radiation, chemotherapy
Tumor Type: Anaplastic Astrocytoma
Notes: Tumor in right frontal lobe.Tumor also affected occipital lobe, some seizures, some paralysis on left side, peripheral blindness in both eyes. Confined to wheelchair due to side effects from radiation, participated in a clinical trial for radiation necrosis. Used aquatherapy and acupressure, feels very well. Retired teacher.
Medications: Tegretol, Neurontin, Ritalin
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Name: Brad
Age: 41
Diagnosed in: 1993
Treatments: Surgery ('95), radiation, chemo, PCV therapy
Tumor Type: Oligodendroglioma
Notes: Tumor in right frontal lobe. No longer paralyzed from surgery; works full time; has young son & daughter.
Medications: Takes Dilantin and Neurontin for seizures
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Name: Lisa
Age: 40
Diagnosed in: 1998
Treatments: Surgery (awake craniotomy), radiation, chemotherapy
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Her tumor was located in the right parietal lobe. She underwent an awake craniotomy due to the "tricky location". Her daughters were 2 and 4 when she was diagnosed. She sometimes forgets her point and has difficulty with her left hand weakness, but is otherwise doing great. She volunteers with a few other organizations including hospice and participates in the NBTS Ride for Research.
Medications: Tegretol
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Name: Janet
Age: 39
Diagnosed in: 2000
Treatments: Embolization and craniotomy (2000); craniotomy (11/2004); 6 weeks of intensity modulated radiation therapy (IMRT) in 2005
Tumor Type: Meningioma
Notes: Original tumor in left sphenoid wing, optic nerve and carotid artery involvement.  Peripheral vision loss regained, some light & noise sensitivities, word search difficulties, short-term memory.  Double vision, balance issues post-craniotomy #2.  Speaks Spanish.
Medications: Allergy to Dilantin detected after 2nd craniotomy
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Name: Venu
Age: 37
Diagnosed in: 2000
Treatments: Surgery, Temodar, radiation
Tumor Type: Oligodendroglioma
Notes: Has coped with numerous side effects from surgery and medications; currently has one-sided weakness and fatigue. Difficulty controlling seizures. Has had occupational therapy, physical therapy, speech therapy and bio-feedback. Currently volunteers at NBTF office.
Medications: Keppra, Topamax, Klonopin & Provigil (as needed)
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Name: Dan
Age: 36
Diagnosed in: 2006
Treatments: Surgery, radiation and chemo (Temodar)
Tumor Type: Oligodendroglioma
Notes: Tumor was anaplastic. Side effects from treatment include: loss of peripheral vision, fatigue, short-term memory problems, and headaches. Background in Human Resources; went back to work after treatment, now is a stay-at-home dad with three young children. Has good advice re: navigating through the "system" (benefits, disability, etc) and helping children cope with a parent's diagnosis and treatment.
Medications:
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Name: Marisa
Age: 32
Diagnosed in: 2006
Treatments: Surgery, radiation, Temodar, vaccine clinical trial
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in right temporal lobe (size of an orange). Has some left peripheral vision loss. Currently on vaccine clinical trial at Duke. Also used nutritional supplements, acupuncture and yoga for symptom management. Had neuropsychological testing. Attends 2 local support groups. Working full time and feeling well.
Medications: Keppra
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Name: Eddie
Age: 50
Diagnosed in: 2006
Treatments: Surgery, radiation and Temodar
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in left frontal lobe. Has experienced side effects such as stomach discomfort, insomnia, anxiety and fatigue. Therapy has helped with emotional piece of survivorship; has had great care from medical team. Went back to work initially, but was unable to continue. Is married with a young child. In good health now and attends local support groups.
Medications: Keppra
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Name: Jennifer
Age: 35
Diagnosed in: 2001
Treatments: 3 surgeries; chemotheraphy wafers; 29 weeks of radiation
Tumor Type: Oligoastrocytoma
Notes: Tumor in right frontal lobe; diagnosed after a seizure; gets focused healing massage therapy; works full-time and is very active; runs marathons; organizes chat rooms for patients looking for current research and information
Medications: Takes phenobarbital to control seizures; has taken Decadron in the past
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Name: Jerry
Age: 51
Diagnosed in: 2004
Treatments: Surgery, radiation, Temodar, Carboplatin, Avastin
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in right parietal lobe. Side effects of treatment and meds include fatigue, ringing in right ear, and low platelets. Has had one recurrence. Current health is excellent, no significant deficits. Works full time as an electrical engineer and is an elder at Crosstimbers Community Church. Is married with 5 children; has website, www.jerrykline.com
Medications: Celebrex, Keppra, Accutane
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Name: Maria
Age: 60
Diagnosed in: 1998
Treatments: Surgery removed 99% of the tumor, Gliadel Wafers, chemo and radiation; Physical therapy
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in right temporal lobe. Diagnosed as a result of seizures. One year after surgery had a grand mal seizure and was in a coma for 5 days. Occasional seizures, balance issues (mostly due to meds). Willing to speak with people here and in Latin America who are interested in getting treatment in the US or in their native country. *SPEAKS SPANISH*
Medications: Neurontin, Dilantin, Phenobarbital, Cortizon, Topamax
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Name: Marjorie
Age: 44
Diagnosed in: 1992
Treatments: Surgery & radiation
Tumor Type: Ependymoma
Notes: Tumor was anaplastic. Gets MRIs every 3 years now. Has a family and is doing well.
Medications:
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Name: Corey
Age: 24
Diagnosed in: 2006
Treatments: Surgery
Tumor Type: Ependymoma
Notes: Benign left temporal lobe tumor. Had awake craniotomy with speech testing. Memory loss after surgery (now much better); has slight sensitivity to sound. Feeling well, working part-time, and plans to attend graduate school in 2009.
Medications:
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Name: Craig
Age: 54
Diagnosed in: 2000
Treatments: Surgery, Temodar, radiation; Alternative Medicine: acupuncture, meditation (very important)
Tumor Type: Anaplastic Astrocytoma
Notes: Tumor in right temporal lobe. He's a physician, hospice volunteer, had cancer previously and worked for years with cancer patients. As a doctor-turned-patient, he has a unique perspective and can explain what doctors don't. He has had great success with Temodar. His tumor is stable and he's feeling well.
Medications: Prednisone, Dilantin
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Name: Harold
Age: 60
Diagnosed in: 1987
Treatments: Surgery; clinical trial for seizure meds
Tumor Type: Low Grade Glioma
Notes: Benign glioma in the left temporal lobe; had complications after surgery (severe swelling); still has seizures occasionally, but otherwise is feeling good. Worked full time (just recently retired) and facilitated the ""Smokenders"" program for many years. Is married with two grown children and has a very close-knit family.
Medications: Lyrica and Lamictal
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Name: Joshua
Age: 34
Diagnosed in: 2005
Treatments: Surgery, chemotherapy (Temodar), radiation
Tumor Type: Oligoastrocytoma
Notes: Tumor located in right frontal lobe. His symptoms included one-sided numbness and severe migraines. Surgery resected 70 – 80% of tumor. He found physical, occupational, and speech therapy to be very helpful. Still has some balance problems, but otherwise feels great. Works full-time and is married with two young children, takes supplements and believes nutrition is very important to battling a brain tumor diagnosis.
Medications: Depakote
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Name: Allison
Age: 52
Diagnosed in: 1992
Treatments: Surgery, chemotherapy, radiation
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor was located in the left frontal lobe and was the size of a golf ball. Has over 16 years of experience as a long-term survivor, daughters were 10 and 8 when she was diagnosed. Found it very hard to go back to work, takes naps everyday. Has a very supportive and loving family.
Medications: Temodar, Decadron, Dilantin
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Name: Billie Jo
Age: 59
Diagnosed in: 1994
Treatments: Surgery, Gamma Knife for recurrence 5/06
Tumor Type: Meningioma
Notes: Tumor is intraventricular. After surgery she had cognitive retraining and vision therapy. She has vision loss in the right half of each visual field. She had a recurrence at the end of 2005 and did Gamma Knife in May 2006 in San Diego. She facilitates a small support group in her area.
Medications:
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Name: Lisa
Age: 49
Diagnosed in: 2002
Treatments: Surgery, Temodar, radiation
Tumor Type: Mixed Glioma
Notes: Tumor on brain stem (rare location for tumor type). Stopped Temodar voluntarily (severe side effects). Has secondary tumor in pituitary/optic nerve as a result of radiation. Gets MRIs every 6 months. Works full time for "Ticket to Work" (social security benefit)- she can answer questions regarding this program.
Medications:
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Name: Debbie
Age: 38
Diagnosed in: 2006
Treatments: 2 surgeries
Tumor Type: Meningioma
Notes: Tumor in right frontal lobe; was symptomatic for over one year ("migraines", vomiting, extreme fatigue, personality changes, loss of balance), prior to diagnosis. After surgery, had temporary paralysis in left hand and difficulty eating (jaw muscles cut during surgery). 3 weeks later started having seizures, swelling and drainage, administered I.V. antibiotics for infection, and underwent 2nd surgery. Returned to work full time and has a family.
Medications:
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Name: Jackie
Age: 50
Diagnosed in: 1996
Treatments: Surgery, radiation
Tumor Type: Oligodendroglioma
Notes: Tumor in left frontal lobe. She suffered from fatigue, hair loss, & redness due to radiation. Also suffered from post-traumatic stress disorder; has arthritis. Has video relay service - deaf or hearing impaired patients are welcome to call.
Medications: Centroid
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Name: Joan
Age: 58
Diagnosed in: 2004
Treatments: Surgery and CAM
Tumor Type: Meningioma
Notes: Tumor in right parietal lobe (size of tennis ball). Has had auras, fatigue, loss of balance and blurred vision. Is feeling well now, works full-time. Practices yoga; acupuncture helped with neuropathy. 2 grown children, has hospice volunteer experience. Has a positive outlook on life, and stresses the value of being your own advocate.
Medications: Keppra; had a difficult time on Dilantin
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Name: Meghan
Age: 18
Diagnosed in: 2007
Treatments: Surgery
Tumor Type: Low Grade Glioma
Notes:

Tumor in hypothalamus. Diagnosed after over one week of non-stop hiccups (unrelated to brain tumor). Had difficulty regaining short term memory after surgery, had intensive speech and occupational rehab. Currently a high school student; had a very hard time returning to school, but is doing very well now. Her career goal is to become a neurosurgeon.
Medications: Keppra
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Name: Jeanette
Age: 53
Diagnosed in: 2000
Treatments: Surgery and chemotherapy (IV)
Tumor Type: Meningioma
Notes: Tumor located in the right temporal lobe. After surgery, had difficulty walking and swallowing and is currently paralyzed on her left side. She went back to school and received her Master's in clinical psychology.
Medications: steroids
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Name: Michelle
Age: 46
Diagnosed in: 2005
Treatments: Surgery (emergency)
Tumor Type: Meningioma
Notes: Tumor in left frontal lobe, caused vision problems since close to optic nerve. Walked out of surgery four days later and felt great - no new growth.
Medications: Dilantin, Vicodin
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Name: Pat
Age: 49
Diagnosed in: 1995
Treatments: Surgery - suboccipital supracerebellar approach, Blood Brain Barrier Disruption, radiation.
Tumor Type: Pineal Tumors
Notes: Finally getting a diagnosis was a huge relief, headaches for over a year and disruptive sleep. Underwent 24 intense treatments (BBB disruptions with Carboplatin). Her son was 2 when she was diagnosed.
Medications: Carboplatin, Etoposide, Cytoxan, Sodium Thiosulfate, Mannitol, Methadone, Lyrica, Propranolol, Temazepam, Trazadon, Demerol, Imitrex, Neupogen, Decadron, Zithromax
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Name: Stephanie
Age: 35
Diagnosed in: 2007
Treatments: Endonasal-neurosurgery, craniotomy, 5 stereotactic radiosurgeries
Tumor Type: Meningioma
Notes: Diagnosed after severe headaches; "banana-shaped" tumor with brain stem involvement. Received multiple options, surgery was very risky. Copes with double vision (which might be corrected in a future surgery) and extreme fatigue. Practices yoga & takes supplements.
Medications:
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Name: Victoria
Age: 28
Diagnosed in: 2006
Treatments: Two surgeries
Tumor Type: Oligodendroglioma
Notes: Right temporal/frontal tumor (grade 2). Now has left field vision loss and copes with short term memory problems. Has had lots of seizures and very sensitive to side-effects from seizure meds, has had Wada test. Currently a stay at home mom with young kids.
Medications:
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Name: Mona
Age: 21
Diagnosed in: 2006
Treatments: Surgery, VP shunt
Tumor Type: Other
Notes: Intraventricular atypical central neurocytoma, tumor on right side of brain, left-side paralysis after surgery due to complications from tumor removal, and a VP shunt. She is going back to school to receive her bachelor's degree and taking it one class at a time. Comes from a big family with lots of support.
Medications: Dilantin (allergic), Keppra
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Name: Lauren
Age: 23
Diagnosed in: 1995
Treatments: 6 Surgeries, VP shunt, gamma knife
Tumor Type: Juvenile Pilocytic Astrocytoma
Notes: Tumor in cerebellum, diagnosed at age 9. Had 6 surgeries and gamma knife over the course of two years. After first surgery she was legally blind and lost coordination on right side. Doing great today, graduated college, working full-time, and is now on a 2-year MRI schedule!
Medications: Decadron
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Name: Jon
Age: 48
Diagnosed in: 1995
Treatments: 3 surgeries (1 shunt placement)
Tumor Type: Pilocytic Astrocytoma
Notes: Lemon-sized tumor, difficult recovery after 1st surgery (contracted meningitis). Tumor recurred in 2006 near brain stem, caused cyst to form, had 3rd surgery. Side effects limited physical activity, has a tremor in one hand and difficulty with balance/coordination. Used CAM for symptom management; hypnosis, Reiki & massage therapy. Working full time and is married with two children.
Medications:
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Name: Lynn
Age: 47
Diagnosed in: 2005
Treatments: Surgery, radiation, Temodar, CPT-11
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in right temporal lobe. Successful surgery, fast recovery. Difficult time with chemo drugs (elevated liver function and low white counts). Hospitalized multiple times for focal seizures and tried many AEDs. Doing much better now, is married with two adult sons.
Medications: Many AEDs; currently only Lyrica
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Name: Karen
Age: 63
Diagnosed in: 1998
Treatments: Surgery, Gamma Knife, CyberKnife with robot imagery treatment
Tumor Type: Hemangiopericytoma
Notes: Tumor near thalamus. Multiple recurrences. Used acupuncture & meditation for chronic pain management. Has thalamic pain syndrome on left side. Doing well now, very active.
Medications:
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Name: Jeneva
Age: 34
Diagnosed in: 2003
Treatments: Surgery, radiation, Temodar
Tumor Type: Anaplastic Astrocytoma
Notes: One-sided weakness led to diagnosis. Tumor was encapsulated. Radiation-induced swelling of scar tissue caused almost complete loss of mobility in left leg. Acupuncture and PT helped regain mobility. Feeling great, no noticeable symptoms. Works full-time as a school counselor, is married with one child. Local support group has been helpful.
Medications: Decadron, Dilantin, Keppra, various anti-nausea meds
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Name: Bruce
Age: 50
Diagnosed in: 1995
Treatments: Surgery, radiation
Tumor Type: Ependymoma
Notes: Tumor in 4th ventricle/brainstem. In the military at the time of diagnosis. Had many complications and long hospital stay after surgery. Has deficits that are manageable including memory loss, double-vision, and problems with balance. Facilitates 2 support groups (one online and one in-person) for survivors. Has advocated for the brain tumor community in Washington DC. Is married with grown children.
Medications:
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Name: Lisa
Age: 43
Diagnosed in: 2003
Treatments: Craniectomy & VP Shunt
Tumor Type: Oligoastrocytoma
Notes: Tumor in cerebellum. After 3 years of "watch & wait", symptoms worsened - MRI showed a cyst near the tumor. Had craniectomy and shunt placed to relieve the pressure. Still has occasional pressure headaches. Works full time as HR Director, is married with 2 children.
Medications: Steroids (in the past - had problems with them)
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Name: Karen
Age: 35
Diagnosed in: 2005
Treatments: Multiple surgeries
Tumor Type: Meningioma
Notes: Tumor was located near cervical vertebrae C1-C4. Had many complications after surgery. Could not swallow, eat, talk, move or breath on her own for many weeks. Had PEG tube and trach. Had neck stabilization surgery and wore a halo for 11 weeks. Has had extensive rehab and is doing well now. Worked as a dental hygienist before diagnosis. Is married with school-aged kids.
Medications: Currently takes Robaxin, Neurontin & Celexa
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Name: Michael
Age: 51
Diagnosed in: 1992
Treatments: Surgery, radiation and chemo (BCNU)
Tumor Type: Anaplastic Astrocytoma
Notes: Grand mal seizure led to diagnosis. Tumor located in occipital lobe. Has short-term memory loss and changes in cognitive "quickness". Upper left field vision loss. Did go back to work after treatment, is now retired. Active support group member. Is married, and has teenage kids. Doing great!
Medications: Lamictal; tried many AED's, allergic to Dilantin and Tegretol
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Name: Danielle
Age: 36
Diagnosed in: 1994
Treatments: 2 surgeries
Tumor Type: Meningioma
Notes: Tumor was located in the right ventricle, size of a small grapefruit. Recovered well from 1st surgery. Recurrence in 2003, had another craniotomy and suffered a stroke after the surgery. The stroke caused left-sided paralysis. Difficult recovery, many complications such as bacterial meningitis. Still recovering use of left side, has had intense PT and OT. Doing well now, has a family and works as a researcher.
Medications: Many AEDs, allergy to Dilantin
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Name: Debbie
Age: 59
Diagnosed in: 1984
Treatments: 2 surgeries, chemo, interstitial implant (radiation), external radiation
Tumor Type: Anaplastic Astrocytoma
Notes: After 1st surgery, chose experimental protocol for treatment; six months later, scarring and swelling required another surgery, had extensive damage to optic nerve, has learned to rely on visual cues to recognize people. Doing well and living life! Enjoys speaking with newly diagnosed patients. Featured "Survivor" in Search #65 (also on website under "Survivor Stories").
Medications:
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Name: Michael
Age: 43
Diagnosed in: 1996
Treatments: 2 craniotomies
Tumor Type: Pilocytic Astrocytoma
Notes: Tumor in cerebellum. Suffered many complications from surgery: double vision, balance problems, memory & a stroke, long recovery, has three children.
Medications:
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Name: Aprile-Anne
Age: 35
Diagnosed in: 1994
Treatments: Surgery, 6 weeks of radiation
Tumor Type: Choroid Plexus Pappilloma
Notes: Still struggling with seizures. Has had allergic reactions to many anti-seizure medications. Attends brain tumor support group. Has 4 children. Reflexology has been helpful.
Medications: Neurontin & Topamax
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Name: Joe
Age: 40
Diagnosed in: 1995
Treatments: 3 surgeries
Tumor Type: Hemangiopericytoma
Notes: Tumor located on left optic nerve. Originally (incorrectly) diagnosed as a meningioma. Has had 2 recurrences. Has lost 80% of vision in left eye, overall health is excellent. Father of two young children and does triathlons, very active and working full time.
Medications:
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Name: Patty
Age: 49
Diagnosed in: 2004
Treatments: Surgery, radiation, Avastin & CPT-11
Tumor Type: Hemangiopericytoma
Notes: Initially (and incorrectly) diagnosed as a meningioma. After surgery, did very well and opted not to have radiation. Recently had a recurrence with mutiple tumors and was treated with radiation and chemo, had extreme nausea and fatigue. Is feeling well now. Married with college-aged children.
Medications:
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Name: Timothy
Age: 33
Diagnosed in: 2003
Treatments: 2 surgeries; currently taking Temodar (plans to take 18 cycles)
Tumor Type: Oligodendroglioma
Notes: After 1st (and only) seizure, had 1st surgery and was diagnosed with a grade II tumor; had a recurrence and a 2nd surgery, 2nd pathology came back as a grade III. Has been taking Temodar, having little to no side effects, and is feeling very well. Very active, runs marathons and raises funds for brain tumor research.
Medications: Keppra
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Name: Kathy
Age: 47
Diagnosed in: 1994
Treatments: 3 Surgeries, radiation, stereotactic surgery
Tumor Type: Oligodendroglioma
Notes: Tumor in left frontal lobe. Experience w/ grand mal seizures. Still taking seizure meds - unable to drive. Has radiation necrosis, difficulty writing, speech not affected, paralyzed on right side due to blood clot, but mobile.
Medications: Tegretol, Lamictal, Neurontin
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Name: Kim
Age: 44
Diagnosed in: 1996
Treatments: Radiation
Tumor Type: Oligodendroglioma
Notes: Tumor in left frontal lobe. Has mobility problems, paralysis on right side (radiation necrosis). Has experience with seizures. Works full time. Used alternative medicine: acupuncture and tai-chi. Teaches piano and performs with her husband.
Medications: steroids in the past, Neurontin, Trental
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Name: Linda
Age: 65
Diagnosed in: 1986
Treatments: Radiation (Linear Accelerator)
Tumor Type: Oligoastrocytoma
Notes: Tumor in the right temporal lobe. No changes for over 20 years - doing well.
Medications:
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Name: Phyllis
Age: 60
Diagnosed in: 1996
Treatments: Surgery and radiation
Tumor Type: Meningioma-Atypical/Malignant
Notes: Tumor in right frontal lobe. Diagnosed as a result of seizures. Initial biopsy came back non-malignant, following pathology determined tumor was malignant. Cared for her father (now deceased) who was diagnosed with a GBM 8 years after her diagnosis. Works full-time as an adolescent and family counselor and has two adult children. She believes that her life experience as a brain tumor survivor and caregiver to her father gives her insight and appreciation for both sides of the road.
Medications: Has been on many medications in the past, including steroids and seizure meds; currently, no medications.
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Name: Mabel
Age: 48
Diagnosed in: 1995
Treatments: Surgery
Tumor Type: Meningioma
Notes: Speaks Spanish. Is active in a brain tumor support group.
Medications: Phenobarital for 5-6 months
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Name: Joyce
Age: 62
Diagnosed in: 1996
Treatments: Surgery
Tumor Type: Meningioma
Notes: Tumor in right sphenoid wing. Vision affected. Partial complex seizures under control, short-term memory loss. Over 35 years experience as RN. Has experience counseling. Volunteers, tutors children in reading and works with teens at her church. Enjoys tai chi, helps balance, arthritis, memory. Willing to call people from other states; she has unlimited long distance phone service.
Medications: Topamax and Keppra
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Name: Jeri
Age: 63
Diagnosed in: 1977
Treatments: 2 surgeries
Tumor Type: Meningioma
Notes: Tumor originally in left temporal lobe. Recurred in 1989 near pituitary gland. Has short-term memory loss. She has helped start 2 support groups in her area and worked on passage of Benign Brain Tumor Act.
Medications:
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Name: Pete
Age: 69
Diagnosed in: 1992
Treatments: Surgery
Tumor Type: Meningioma
Notes: Tumor was in right frontal lobe. Had temporary side effects. Has had improvement with memory problems. Willing to discuss spousal issues. Returned to work after 2 months; now retired. Current health is excellent. Happy to offer support!
Medications:
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Name: Chickie
Age: 53
Diagnosed in: 1991
Treatments: Surgery
Tumor Type: Meningioma
Notes: Tumor on right optic nerve. Part of tumor is still there. Has some memory loss. No add'l treatments; MRI every 5 years. Has good advice for people with vision problems. Working part-time and doing well.
Medications:
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Name: Lloyd
Age: 67
Diagnosed in: 1995
Treatments: Surgery
Tumor Type: Meningioma
Notes: Tumor was in left frontal lobe. No deficits. Very active in the brain tumor community.
Medications:
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Name: Laura
Age: 48
Diagnosed in: 1998
Treatments: Surgery and radiation
Tumor Type: Medulloblastoma
Notes: Tumor in Cerebellum. She can offer support and hope, not advice. She is knowledgeable regarding radiation and debated chemotherapy--did not do it. Taking CoQ-10 (antioxidant). Memory has improved over time. Did yoga, physical therapy.
Medications:
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Name: Diane
Age: 40
Diagnosed in: 2004
Treatments: 4 cyst aspirations, 1 craniotomy, radiation.
Tumor Type: Pilocytic Astrocytoma
Notes: After initial diagnosis, told that surgery (tumor on brain stem) was VERY high risk - had problems with cyst near the tumor filling with fluid. Had tremors, balance problems, vision and speech difficulty, low energy. After 4 separate cyst aspirations, decided to have surgery to remove the tumor. Had the tumor removed (and now is symptom-free), and is feeling mostly back to normal.
Medications:
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Name: Mary
Age: 58
Diagnosed in: 1993
Treatments: Surgery
Tumor Type: Pilocytic Astrocytoma
Notes: Tumor on cerebellum. Had severe vomiting; acupuncture for 6 months stopped it. Had Occupational Therapy and Physical Therapy. Deficits are all motor-related and include right-side weakness, balance and coordination problems, and difficulty writing. Works full time. No medication now.
Medications: Decadron, many anti-nausea medications
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Name: Linda
Age: 53
Diagnosed in: 1986
Treatments: Surgery
Tumor Type: Hemangioblastoma
Notes: Paralysis from neck down following surgery in 1986. Spent 8 months in hospital and had several years of outpatient Physical Therapy. Continued numbness and weakness along right side. Was featured in the Fall 2000 SEARCH as a Survivor Story.
Medications: Neurontin and Depakote for nerve pain
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Name: Dart
Age: 33
Diagnosed in: 1999
Treatments: 3 surgeries
Tumor Type: Germinoma
Notes: Tumor was central Neurocytoma. He feels great now; is working full time.
Medications:
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Name: Erika
Age: 59
Diagnosed in: 1997
Treatments: Surgery, chemo, radiation, and Gamma Knife
Tumor Type: Glioblastoma Multiforme (GBM)
Notes: Tumor in right frontal lobe. Left side paralyzed but does not affect speech.
Medications: Dilantin
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Name: Julie
Age: 43
Diagnosed in: 1999
Treatments: Sterostatic radiosurgery, PCV (did not respond well); Temodar
Tumor Type: Anaplastic Astrocytoma
Notes: Tumor in left frontal lobe. Positive outlook, wants to provide hope to others.
Medications: Dilantin, Keppra, Celexa, Topamax
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Name: Wilma
Age: 75
Diagnosed in: 1996
Treatments: Surgery and CAM. Had a regrowth and was treated with Gamma knife
Tumor Type: Acoustic Neuroma
Notes: Has tinnitis & balance problems. Tried complementary and alternative medicine- acupuncture, massage, chiropractor, nerve block injections (none worked). Started local chapter of Acoustin Neuroma Association. Has hearing loss in one ear and had surgery to repair CSF leak. Has 4 adult children, 7 grandchildren.
Medications:
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Name: Terin
Age: 52
Diagnosed in: 1997
Treatments: Surgery, 2 Gamma Knife treatments
Tumor Type: Acoustic Neuroma
Notes: Difficult diagnosis; post-surgical issues, headaches and facial paralysis. After initial diagnosis and treatment, had a recurrence that was diagnosed as a meningioma and treated with another Gamma Knife procedure. MRI every 6 months.
Medications:
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Name: Dalton
Age: 80
Diagnosed in: 1983
Treatments: Surgery
Tumor Type: Acoustic Neuroma
Notes: Tumor near brain stem. No current treatments.
Medications:
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