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Living With a Brain Tumor - A Patient and Family Conference in Washington, DC

March 20, 2010
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April 11, 2010
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Family Caregiver Workshop - Philadelphia, PA

April 16, 2010
Philadelphia, PA
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Name: Maria
Age: 61
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: Michael
Age: 44
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: Laura
Age: 42
Diagnosed in: 2007
Treatments: Surgery (lobectomy), chemotherapy (Temodar), radiation therapy, Keppra
Tumor Type: Anaplastic Astrocytoma
Notes: Tumor located in right parietal, symptoms included extreme fatigue, headaches. She had a grand mal seizure, MRI showed tumor. First Dr. told her, "Nothing can be done", but they did not accept that. She was med-evacuated to a different center and surgery removed right parietal lobe. The Wii video game system in physical therapy was a huge help! Now has left side neglect and drives with special eye glasses and GPS system. She is married with 2 kids, has a great group of friends and is, "Very comfortable talking to others and answering questions".
Medications:
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Name: Tina
Age: 41
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: Lisa
Age: 40
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: Cheryl
Age: 43
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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