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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

Gene testing, precision medicine, and shared information

Brian's journal

Brian

gene-testing-precision-medicine-and-shared-information

200054

Dear members, How should we be thinking about our genetic information when it comes to disease? It’s a question many of us are asking here on Inspire, sometimes very intensely, depending on the nature of the disease. The information we get from our genome can have a direct impact on so much, including how, or if, we can be treated for certain types of disease -- that is the nature ... Read More

American Brain Tumor Association

Two-Year GBM Anniversary Today

In: Malignant tumors

AG-1

two-year-gbm-anniversary-today

200054

Hi Everyone, I haven't posted in a while, but I continue to read. My heart continues to go out to every patient, family member, and caregiver facing GBM in our community. I gain so much strength from your perseverance, bravery, strength, and wisdom. I share the happy news that my husband Darrell and I are celebrating his two-year GBM diagnosis anniversary today. Here's a pic of our ... Read More

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American Brain Tumor Association

Brain Tumor

In: Living with a brain tumor

WHYME_ONLY

brain-tumor-31

200054

I was diagnosed with Maningioma (benign brain tumor). I took it very light. But i have been facing lots of problem like seizures, confusion, depression etc. Doctor suggested to go for surgery, i am not mentally prepared for it as i am alone. My wife left me and took away my kids too. She may be right because i become problem for them. They might have fed up of my condition. What to ... Read More

American Brain Tumor Association

Worried about no treatment

In: Treatments

Feluc1908

worried-about-no-treatment

200054

I am worried about my sister's treatment - or lack of treatment. She had her second surgery in early December 2017 - another successful surgery - 100% resection, and she has been lucky to again come through the surgery with no visible deficits. This surgery was 14 months after the first surgery. She has had great quality of life from the beginning. Did SOC - with 12 months TMZ. After ... Read More

American Brain Tumor Association

tincture of opium

In: Malignant tumors

Bonville

tincture-of-opium-1

200054

Has anyone used this for diarrhea? My husband's oncologist prescribed this because he has problems with diarrhea since he is getting Irinotecan infusions for recurrent GBM. Insurance does not want to cover it and I am trying to get them to make an exception. Just wondering if anyone has an opinion on this, good or bad? Thanks, Bonnie ... Read More

American Brain Tumor Association

Post Mortem Research?

In: Grief and loss

Julesidaho

post-mortem-research

200054

Hi - I continue to love this community despite my husband having passed away from glioblastoma multiform almost five months ago. And while I have gained significant insight from this community, this is my first post. My husband was diagnosed with GBM after a ten day stay in hospital following his biopsy. We were all hoping for a brain abscess when the pathology that had to be sent ... Read More

American Brain Tumor Association

Patients and caregivers are “Experts by Experience”

Brian's journal

Brian

patients-and-caregivers-are-experts-by-experience

200054

Dear members, Today we are excited to announce that Inspire and Mayo Clinic have launched “Experts by Experience” – a series of columns written by patients and caregivers from around the world. The kickoff column is Kindness at the Margins for Caregivers, by patient advocate Renata Louwers. A main purpose of the series is to bring the patient perspective to people who can learn from ... Read More

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American Brain Tumor Association

I just received an email from Yale in regards to the LGG

In: In the News

Hotaspid

i-just-received-an-email-from-yale-in-regards-to-the-lgg

200054

Hello all. I just received an email from Yale in regards to the LGG: Low Grade Glioma Registry. If you have not registered as having a low grade gliomoa, do so here; glioma@yale.edu I have no idea WHAT a twitter chat is, but they are having one: fyi we are having a twitter chat about the registry on March 4 if any interest to you https://l.facebook.com/l.php?u=https%3A% 2F%2Ftwitter.com%2Fbtsmchat&h=ATMu-xgnTH ... Read More

American Brain Tumor Association

5-ALA Guided Surgery, Accompanying anxiety, and Questions for the Hospitals

In: Treatments

VaxAdv

5-ala-guided-surgery-accompanying-anxiety-and-questions-for-the-hospitals

200054

The FDA approved 5-ALA guided surgery for brain tumor resection in July 2017. https://www.fda.gov/Drugs/InformationOnD rugs/ApprovedDrugs/ucm562645.htm. Not all hospitals have adopted this new technique, which may be due to a lag in training and implementation. Their has been multiple Meta-analysis of 5-ALA guided surgery has been done by the FDA and independent authors. Here's 3 studies ... Read More

American Brain Tumor Association

Subependymoma

In: Living with a brain tumor

Bctb

subependymoma-1

200054

Hey there, I’m new here. I was diagnosed with, what they believe is, a subependymoma in the cerebellum. I’ve had vertigo, nausea, migraines, blurred vision and fatigue since July. They found the lesion during an mri in November. It’s only the size of a grape so they’re saying it has nothing to do with my symptoms. Anyone else have this experience? I’m on wait and watch for now, due ... Read More

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