http://my.braintumorcommunity.org/discussions/caregivers-family-and en-us http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/05/06/how-do-you-keep-going http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/05/06/how-do-you-keep-going Sun, 06 May 2012 05:23:15 GMT Jerangi http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/04/19/need-advice-on-breaking-the-news-to-family-and-fri http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/04/19/need-advice-on-breaking-the-news-to-family-and-fri Thu, 19 Apr 2012 13:53:15 GMT Family0418 http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/04/16/four-years http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/04/16/four-years Mon, 16 Apr 2012 15:20:55 GMT Anonymous http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/04/15/how-do-you-deal-with-the-emotional-and-physical-st http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/04/15/how-do-you-deal-with-the-emotional-and-physical-st Mon, 16 Apr 2012 03:16:25 GMT Jerangi http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/04/14/bob-more-tired-and-cold http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/04/14/bob-more-tired-and-cold First, I still want to say that Bob is feeling pretty good and continues on his cabinetry project in our bedroom to finish the reno. 
But...he seems to be growing more tired than normal.  His body always feels cold to the touch and he complains of being cold all the time.
I can also see him becoming more and more forgetful.  For instance, he will ask me a question and about an hour later, he will ask me same question.
Anybody out there have had this happening to you?]]> Sat, 14 Apr 2012 19:47:21 GMT Sus http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/04/09/scared-and-heartbroken http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/04/09/scared-and-heartbroken I'm feeling very scared and heartbroken for my sister and just wanted to vent to people who have been in similar situations and see if anyone has any thoughts or advice.  My 34 year old sister was diagnosed with a mixed glioma in her frontal lobe about 10 years ago.  She had surgery very soon after that at sloan kettering and they removed almost 75% of the tumor.  About 3 years later it began to grow again so she had chemo and radiation.  After that she began having a lot of focal seizures and had to stop driving, but the tumor wasn't growing which we were happy about.  
Then, last spring the tumor began growing again and so the doctors at smilow had her start Temodar.  The Temodar worked great for about 5 months and was actually shrinking the tumor.  But a MRI in January showed that the tumor was growing again and the Temodar was not working anymore.  And to make matters worse, we found out the tumor was much more agressive, a higher grade and that it spread to her brain stem and basal ganglia.  So, she is now doing Avastin treatments every two weeks.  The doctors say theres not many options after the Avastin.    
Since the tumor spread, her symptoms have gotten a lot worse and my family has had to schedule people to be with her and her 7 year old son at all times.  She has lost use of her left arm, her left leg is weaker, the left side of her face is droopy, she's gained about 30 pounds in a few months, her breathing is a lot heavier at times, and she has had issues with wetting her bed and not being able to make it to the bathroom.  Shes always had a positive attitude, but is starting to lose it and she alternates her moods between silly, grumpy and sad.  She feels like she looks like a "weirdo" and is embarrased.  I love her so much and it is so painful to watch. 
Most of the doctors havent given us a real prognosis because they want to see if the Avastin is working, but one doctor told my mom he wants to recommend hospice.  I try and stay positive so I can stay strong but I'm starting to really get scared because I honestly don't know how I'll deal if I lose her.  
We're going to an appointment next monday for an MRI and to see the doctor at Smilow to see how the avastin is working.  I just hope there's some sort of miracle.    

 
    ]]> Mon, 09 Apr 2012 11:06:45 GMT hermione73 http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/03/26/appointment-to-receive-diagnosis http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/03/26/appointment-to-receive-diagnosis Mon, 26 Mar 2012 18:14:49 GMT slpin http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/03/10/father-with-glioblastoma http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/03/10/father-with-glioblastoma Sat, 10 Mar 2012 12:23:16 GMT caseymarie05 http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/02/25/emotionless-2 http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/02/25/emotionless-2 Sun, 26 Feb 2012 03:54:20 GMT Gabrielle http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/02/21/my-mum-has-been-diagnosed-with-a-brain-tumour http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/02/21/my-mum-has-been-diagnosed-with-a-brain-tumour
We are currently waiting for the results of the tests but one thing the nurse did mention was that the tumour has moved the position of her brain.  She has asked for us to talk to the consultant but as of yet we haven’t not been able to.  Can anyone explain anything about this? It sounds terrible, can the brain move back, is this very damaging?

Thank you for your help!

]]> Tue, 21 Feb 2012 15:21:53 GMT NicoleBouzon http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/02/14/brain-tumor-survey-2 http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/02/14/brain-tumor-survey-2
My name is Debra Gotch, I am a brain tumor survivor and life coachi. I am writing a book to help thousands of people to overcome the emotional difficulties of having a brain tumor. I can draw on my own experience however I would really value hearing about your own challenges and how you have dealt with them. Please take this 10 minute survey below and forward it to anyone else you know affected with a tumor. Thank you so much!

https://www.surveymonkey.com/s/K833LPY]]> Tue, 14 Feb 2012 13:08:27 GMT debragotch http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/02/14/brain-tumor-survey http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/02/14/brain-tumor-survey

My name is Debra Gotch, brain tumor survivor and life coach. I was diagnosed with a brain tumor just 4 days after having my beautiful little girl. I am currently writing a book to help thousands of people overcome the emotional difficulties of having a tumor and would ask if you could spare 10 minutes to complete the survey below.  This is very valuable information as it will help me to consider other peoples challenges outside of my own for the book. Thank you so much for your time and if possilbe would you please pass this link to anyone else you know affected by tumors. 
https://www.surveymonkey.com/s/K833LPY]]> Tue, 14 Feb 2012 12:44:43 GMT debragotch http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/02/08/malignant-astrocytoma---help http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/02/08/malignant-astrocytoma---help Wed, 08 Feb 2012 19:54:24 GMT mathewvc http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/01/30/your-oncologist http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/01/30/your-oncologist Just thinking about what oncologists give patients as their prognosis for GBM4.  Would like to know what others say to you.]]> Mon, 30 Jan 2012 17:36:05 GMT Sus http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/01/24/peace http://my.braintumorcommunity.org/discussions/caregivers-family-and/2012/01/24/peace Tue, 24 Jan 2012 21:30:06 GMT 8ntfair