Living with a brain tumor

Good MRI

  • By Rofffamily · New reply March 6, 2014
  • 6 replies
  • My beautiful husband pulled through the MRI again. I was so scared and shaking this time. We are 12 months in and 8 months in to temodar. Anyway the oncologist said its good news, the tumour is stable ...

Can you believe?

  • By loneranger444 · New reply March 5, 2014
  • 8 replies
  • Can you believe I went to meet my new VA Doctor and she made the statement "well your tumor was removed so your fine now" I had to tell her that they couldn't remove it all and I'll have to have surgery ...

Signs of progression

  • By Rofffamily · New reply March 4, 2014
  • 13 replies
  • My husband was diagnosed with AA3 11 months ago. We have a MRI in 2 1/2 weeks. The last one in December apparently looked good, but I am petrified about this one. The last few days he has been behaving ...

Speech Difficulty

  • By calabria1982 · New reply March 1, 2014
  • 7 replies
  • My son Michael has had moments where speech has been delayed or he finds difficulty in getting the words out. He was on topomax and it was causing similar problems so the doctor put him on depacote. We ...


  • By Nanth · New reply February 28, 2014
  • 1 reply
  • My husband had a stroke in sept. They found 2 large tumors. He has since had two brain surgeries to resect them. He also has 2 smaller tumors. They are in 2 different lopes. He has completed radiation ...


  • By Nanth · Posted February 28, 2014
  • 0 replies
  • My husband had a stroke in sept. They found 2 large tumors. He has since had two brain surgeries to resect them. He also has 2 smaller tumors. They are in 2 different lopes. He has completed radiation ...


  • By mathmom411 · New reply February 26, 2014
  • 8 replies
  • Thought I'd start this thread to help. After waking up before 5 am this morning ... I decided to start reading another book. People on this site have mentioned it. Please add any books you've found helpful ...


  • By NH-DIPG · New reply February 25, 2014
  • 3 replies
  • My husband is falling apart.. I have a pontine glioma diagnosed in May 2012 and completed treatment with radiation/Temodar in August 2012. After treatment and recovery my symptoms have improved and MRI's ...

How long after incontinence starts?

  • By Gkg · New reply February 24, 2014
  • 21 replies
  • Greg is fixing to start his 4th month in hospice care. His decline has been very slow. The past week he has gotten much much weaker and has become incontinent. It is getting difficult to get him up and ...

Insurance Companies & Mounting Medical Bills

  • By KimberleyLB · New reply February 23, 2014
  • 11 replies
  • Hi, Would anyone be willing to share their best tips, tricks, and secrets for handling insurance companies, mounting medical bills, negotiating a break? Or in general how does everyone deal with all of ...

GBM last stages

  • By MJReid · New reply February 23, 2014
  • 10 replies
  • Brother no longer can pee or have bowel movement. Does this mean he's close to dying? Still eating and drinking. But in bed, weak ...

Survival Story

  • By Rofffamily · New reply February 22, 2014
  • 9 replies
  • I watched a TV program on a t TV program Australian Story tonight. It is the story of David Murrell. Download it! It is a lovely story and I watched it with my 11 year old daughter. It shows the journey ...

Hemianopsia help? Advice? Experience?

  • By mathmom411 · New reply February 21, 2014
  • 7 replies
  • My husbands tumor is acting up. MRI on 2.14.14 shows small growth - appearing whiter on film. grrrrr AA3 in RT occipital lobe - we were warned after the 2nd crainy that left peripheral vision was a high ...


  • By Rofffamily · New reply February 15, 2014
  • 5 replies
  • I read something on the web today about a study with mice showing that antioxidant supplements, particularly vitamin c and e, led to increased tumour growth in mice. It hasn't been trialed on humans yet ...

Non specific changes on MRI

  • By Scottttt · New reply February 11, 2014
  • 1 reply
  • I just had an MRI and I'm trying to interpret the doctors' responses. I had a Mixed Oligoastrocytoma grade III completely resected a year ago, followed by 6 weeks of radiation and chemo. Currently doing ...

Public or Private Sharing?

  • By olyfox · New reply February 10, 2014
  • 13 replies
  • As my wife and I near the end of her 3-years of various treatments for her GBM, I'm reflecting on our decision to make our family's "journey" through these years accessible to literally hundreds (if not ...


Bombastic (Inactive)
  • By Bombastic (Inactive) · Posted January 28, 2014
  • 0 replies
  • 'm dealing with a lot of pain as a result of the side effects of the medications I'm on, which is leaving me with anxiety. instead of focusing on the cause of the pain the doctor at the pain clinic that ...


  • By Wbac · New reply January 25, 2014
  • 6 replies
  • Is anyone taking provigil regularly? My father in law has just began taking it and We are starting to see some positive changes. He is more in the moment , speaks more and it's helping him with his daily ...

6 months post op Melongioma Brain Tumor

  • By Rebecca2013 · New reply January 25, 2014
  • 11 replies
  • Dear Friends,I wanted to let you know I am doing well since 6 months ago surgery.Only complaint at this time....I have this horrific odor smell in my brain! I can't smell anything! When I had surgery ...


  • By Mamike · New reply January 24, 2014
  • 27 replies
  • Does anyone know how to apply for SS Disability? I was diagnosed with GBM 4 last year and I am now unable to work any longer. Should I hire an attorney or can it be done on my own. Thanks for any and ...

Things you can do

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