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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

3rd year anniversary

In: Caregiver corner

Cura

3rd-year-anniversary

200054

Today is the 3rd year anniversary or the beginning of our GBM journey. Bob has endured radiation, 2 types of chemo, 5 craniotomies and various supplements. He was very active in his Triathlon and CrossFit activities until the end of December. A cold sidelined him in January and his 5th and last craniotomy on Feb 23 has been wrought with complications. We are now in palliative care ... Read More

American Brain Tumor Association

AnCan's Virtual Support Groups: week. of May 20 - free, drop-in ...join us!

ardeee's journal

ardeee

ancans-virtual-support-groups-week-of-may-20-free-drop-in-join-us

200054

Join these Answer Cancer Foundation www.ancan.org virtual groups online or by telephone - see below. All groups are FREE and DROP-IN .... no sign up required. Our groups are peer-led, very knowledgeable and provide support to help you navigate treatment decisions as well as providing a forum for related issues. The Caregivers and Inner Conversation virtual groups also offer emotional ... Read More

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American Brain Tumor Association

Is this Evil versus Good battle ?

In: Recovery

MartinoSclavi

is-this-evil-versus-good-battle

200054

Hello! I have been told of the return of the Cancer aliens on my brain...so, to engage this battle I have posted this Blog. here is the link, bu I'll put in below as well ( I no longer can read so I might have made a mistake- but that is a super power I guess ;-) http://thefinchinmybrain.com/index.php/2 018/05/16/is-this-evil-versus-good/ Is this Evil versus Good… ? by Martino Sclavi ... Read More

American Brain Tumor Association

PROGRESSION OF OLIGO

In: Living with a brain tumor

Hotaspid

progression-of-oligo

200054

Can an oligodendroglioma grade II ( aware that 1p19q co deletion confirm it’s an oligo) IDH1, MGMT methylated ever progress to GBM. I am aware it can progress in a higher grade but not in genetic makeup. I am part of Facebook group oligodendroglioma/ low grade and we are having a discussion on this topic. Is a grade 4 oligo the same as GBM? What is your opinion on this? Is there anyone ... Read More

American Brain Tumor Association

Not sure what to expect

In: Caregiver corner

Lovebug975

not-sure-what-to-expect-10

200054

Good morning everyone, From my last post - my sister who was diagnosed in Oct 2017 with GBM - 2 weeks ago ended up having a staph infections from her surgery which was 5 weeks ago. Because of this and the possibility of the lowered white blood cell count from the Avastin and Lomustin and just the tumors playing havoc - she was rushed to the hospital by ambulance - where she unfortunately ... Read More

American Brain Tumor Association

Another wonderful man gone too soon

In: Grief and loss

lattitude30

another-wonderful-man-gone-too-soon

200054

My sweet, smart, loving, 54 year old husband and father of our 15 year old son left the confines of his earthly body early Monday (5/14/18) morning. It is comforting to know that he is with Jesus, but I miss him terribly. Everything in this house reminds me of him. I seem to be able to function when I'm busy and people are here helping plan out his Celebration of Life for this Saturday ... Read More

American Brain Tumor Association

EGFR activating mutations in HGG / GBM

In: Living with a brain tumor

conley

egfr-activating-mutations-in-hgg-gbm

200054

Does anyone have any experience in seeking or securing EGFR inhibitor class drugs for adjuvant therapy in GBM or other high grade glioma, alongside SOC? These drugs (Afatinib, Cetuximab, Erlotinib, Gefitinib, Lapatinib, Osimertinib, Panitumumab - with trade names like Tarceva, Iressa, Tagrisso) are FDA-approved in other tumor types (e.g., lung) so their use in brain is considered off-label ... Read More

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American Brain Tumor Association

Announcement: an update on tags

Brian's journal

Brian

announcement-an-update-on-tags

200054

Members, This afternoon, we will remove all tags from Inspire until we can better address the concerns you have raised, and give you more control over this feature. I am sorry that we launched this feature too quickly, without enough member feedback, and I thank all of you who took the time to voice your opinions and give us helpful feedback. With this in mind, there are a few things ... Read More

American Brain Tumor Association

Navigating the New Normal After a Brain Cancer Diagnosis

In: Living with a brain tumor

iN33dZ3n

navigating-the-new-normal-after-a-brain-cancer-diagnosis

200054

In honor of brain tumor awareness month (#BTAM), Tocagen is sponsoring a live Q&A session for patients and caregivers on Thursday May 24th at 4pm PST. A registered nurse specializing in brain tumor patient care will cover topics ranging from managing a brain cancer diagnosis to clinical trials participation. The event will be live streamed via Tocagen’s Facebook page and archived ... Read More

American Brain Tumor Association

Facial Palsy Post Petroclival Memingioma Part Three

In: Living with a brain tumor

pressed4u

facial-palsy-post-petroclival-memingioma-part-three

200054

Hello all Hi Ming, Castra, Gloria ,Lerato and all to continuation of Mings post Lost my ipad a couple of years back and all my contacts etc on there, then looking after youngest daughter who was seriouslly injured in an accident so not been updating stuff and enjoying all your replies Ming59 Is going strong, just back from Australian trip to see Sister. My MRIs now only every two years ... Read More

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