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Brain tumor support and discussion community. Share information about malignant and non-malignant tumors, GBM, immunotherapy, genetic testing, and more.

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American Brain Tumor Association

Almost Goodbye

In: Grief and loss




I never thought my husband and I would be in this place. When he was first diagnosed in June 2016, I was beyond certain that he would be one of the lucky ones, that something so terrible couldn't happen to him. He's only 40. He has two little kids at home who adore him. His first resection was successful and he breezed through the SOC treatment. It barely took him down. Six months ... Read More

Ask the Expert: Genetic counselor Nisha Isaac

Cancer-Inspire's journal



Nisha Isaac, M.S., CGC, is a certified genetic counselor at the University of Maryland’s St. Joseph Medical Center who focuses on cancer patients. Ms. Isaac will be available from Monday, March 19 to Friday, March 23 to answer questions about understanding genetic testing and cancer risk. If you would like to ask her a question, we invite you to do so in a comment below. Ms. Isaac ... Read More


YOU made an Inspire glossary!

Radha_Inspire's journal



Greetings! I’d like to introduce a new resource for all of us in the Inspire community - a glossary. We believe this will be a helpful resource that will improve your experience on Inspire. Thanks to the many, many of you who suggested this feature and helped make it a priority. Inspire’s glossary includes common terms and acronyms that reflect the shorthand that patients, caregivers ... Read More

American Brain Tumor Association

18th birthday

In: Adolescents and young adults




Last week we celebrated my daughter's 18th birthday. How I wish the circumstances were different.... She was diagnosed 3 months ago with GBM (H3K27M, wild type) in her right thalamus. The tumor is inoperable (we also sent her scans for a 2nd opinion in St. Louis) so a shunt was inserted and a biopsy was taken. So far she finished the 6-weeks RD+TMZ and in a couple of weeks will start ... Read More

American Brain Tumor Association

GBM post Surgery

In: Malignant tumors




My father in law is just less than 3 weeks post GBM removal. We were wondering how others recovered post surgery. Drs don't seem concerned, however, he is not strong, he can't eat well and is sleeping alot. What was recovery like for you or your loved one ... Read More

American Brain Tumor Association

No Medical ins I need advice

In: Living with a brain tumor




A friend of mine does NOT have have medical insurance and was given MRI without contrast from a free clinic. They discovered white matter in her brain. She has hydrocephalus and possibly a brain tumor. I don’t know all the specifics, she has bad headaches, vomits and eyes twitching and was told not to drive anymore,I told her she needs to go to the ER... any suggestion for her. She ... Read More

American Brain Tumor Association

Glioblastoma support

In: Caregiver corner




I joined this community to find support as my family and I navigate Glioblastoma. My 61 year old husband was diagnosed in September 2017. Like most, it was such a shock... He went from teaching High School Chemistry and Math to retirement in a matter of weeks. At this point he has responded well to treatment. We were fortunate to be refered to UCSF. His tumor was located in the Left ... Read More


American Brain Tumor Association

Almost Home?

In: Caregiver corner




After 5.5 months in hospice care my husband with GBM may be close to ending his journey. He has been fairly stable the whole time he’s been in hospice and lived almost three times longer than his 1-2 month prognosis in October—thanks to the addition of Celebrex I believe. Yesterday he had so many focal seizures I lost count. He started his day using a walker to get to his favorite ... Read More

American Brain Tumor Association

EMU Test for Increased Seizures

In: Treatments




My husband has GMB 4 (diagnosed in 2014). His MRI's have showed the tumor to be stable, but he is having seizures a lot more often. He is having around 1-2 a week for the past 8 weeks. Prior to that he hadn't had a seizure in 1 1/2 years. Now his doctor wants to do a EMU test for 5 days in the hospital. Has anybody had this test done or experienced where the MRI shows stable, but seizures ... Read More

American Brain Tumor Association

Optune inclusion in SOC

In: Treatments




The National Comprehensive Cancer Network (NCCN), a not-for-profit alliance of 27 of the world’s leading cancer centers, has updated its clinical practice guidelines to recommend Optune® in combination with temozolomide as a category 1 treatment for newly diagnosed glioblastoma (GBM). With Optune included in the SOC treatment guidelines it should be impossible for insurance companies ... Read More

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