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glioblastoma

wizardofhaas
Posts: 2
Joined: Mar 2012

My brother was diagnosed today with glioblastoma, neuromd said prognosis is poor, I need info please from survivors!!

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im sorry to hear about your brother.I know the road you are on all to well...Tell me about your brother. Can he have surgery to remove it? Where is it, how big is it? I know this is all so over welming right now. I lived this nightmare with my sister. Hopeful you will come back to this site, it is a good support system because we all have been there.

dasspears
Posts: 233
Joined: Feb 2009

My husband's 56 year old sister was diagnosed with grade 4 glioblastoma in November 2011. She has 2 tumors - one was located on left side and 70% of the tumor was removed. The 2nd tumor is large and located midbrain - considered inoperable. She was taking Temodar and then had 5 weeks of radiation. The MRI showed the large tumor to be stable and the resected tumor began to grow. She is now on Avastin and scheduled for another MRI in 3 weeks. In November, she was told she may have 7 to 11 months to live. We are hoping the Avastin will give her some time. I know she sleeps most of the day, has weakness on her left side, is shaky and is experiencing confusion and dizziness. We are scheduled to visit with her and her husband in mid-April.

It doesn't seem as though there has been much time to process this journey. At times, it seems surreal.

archanasheth's picture
archanasheth
Posts: 5
Joined: Feb 2012

I had surgery Monday, February 13, got my diagnosis that Friday. I started radiation two weeks ago today, and Temodar the Monday before that. I feel good, and the surgeon was wonderful, Dr. David Barnett at Baylor Hospital in Dallas, TX. During surgery while I am still open, he did an MRI so he could see if he got as much as possible. I feel good about the treatment. I never asked "how long I have to live?" That is not an option I want to think about. The doctors have not given me a reason to think any different. Don't give up, get more opinions. Get more information. Did your brother have surgery. Is he going have surgery? Ask about experimental treatments. Because I also have Neurofibromatosis (neurological disease diagonosed at birth) and a previous cancer (sarcoma in 1996) made me disqualified for experimental treatments.

Scottgri
Posts: 44
Joined: Mar 2012

I was given the same news exactly one year ago, according tom the first doc I was supposed to be gone 3 months ago. There is hope out there, I am literally living proof there is hope!

GBMs are freaking' nasty and scary, no question. My first few days were the hardest, and then I found hope.

I am back to work full time and feel completely normal again.

There are more things than I know of that set the stage, attitude does make a difference, along with location, size, and again a lot more than I understand. Too many differences really means nobody knows how long, and every one of us is a Mack truck brake failure away, the difference is we got a warning shot across the bow and get a chance to see it coming, and try to do something about it.

My first docs offered me palliative care and a hospice bd in a few months. I thanked them for their time and with the help of my GP found a doc who sent me to Duke University and I haven't looked back. There are other excellent places out there like MD Anderson, University of California San Francisco, johns Hopkins and probably even more. I got admitted to a phase 2 trial, am currently on cycle 8 of 12, then we'll see what's next. Duke's tag line is pretty cool, "at Duke there is hope", and I found them at a time I really needed some. Now I'm chilling, building a new house and not even considering this is it for me, I'm not done yet.

I'm new to this board and will try to offer my perspective as best I can, but from what I've seen so far there are a lot of people on this site offering help, a lending ear and sharing our experiences.

This is certainly the hardest thing i have ever faced, but i truly believe i have it beat for the long-term. There are stories of long term survivors, we are a minority, but a growing population. No one can tell you how it will turn out nor when, I knew I could beat it and am proving it right now!

kt1243
Posts: 1
Joined: Mar 2012

I am sorry to hear about your brother.

As a friend fighting breast cancer (recurrence after 8 years) said to me all cancer "Stinks bigger than a stinking stinky thing that even roald dahl couldn't make cute!"

I was given the GBM diagnosis October 7 2011, and had surgery on the 8th. About 98 % resected. I am 44. My surgeon was not very optimistic, but I choose not to believe him. 33 days for radiation with temador and I feel great. I am now on the 5/23 Temador and Avastin. My post radiation shows shrinkage.

This is a scary and difficult to hear.

I have short term memory loss and did speech therapy for a while. Now I am fine. I ride my horse, exercise, work at our business etc.

My neuro-onco has never mentioned prognosis and I will not ask. This is one of the the reasons that I trust her. If there was no hope she would tell me. Find somebody that you trust will give you hope. There are more survivors than we know about I am sure. Many people are not comfortable with the Internet so we don't hear about them.

Like ScottGril I will not give up hope, there are new trials about all the time.

4liamella
Posts: 1
Joined: Mar 2012

I find your comment so interesting; my daughter was diagnosed with a glio stage 4 on
March 19, 2010. Please stay with the doctors on this and use this source as a way to express yourself during this time. It's overwhelming; so much information and so much happening. Believe me just stay strong (eat and sleep well). My daughter, who is just turned 33 yesterday has 2 small children and we daily pray for her. She has had 2 surgeries and the neurosurgeon also said the prognosis is poor (6 months to 1 year). And, with the help of her neuro-oncolgist and her neuro-radiologist she is with us today. She was on the chemo pill called Temadar for 20 months with very little side effects; also with that, taking Zofran to coat her stomach. She was tired many times sleeping for 11-12 hours. Now, she has taken a break from the chemo, and the tumor is stable. It's important to find out the location of your brother's tumor and how much can be operated on. The size is important; some have 2. My daughter's tumor is inoperable. Now that she's off chemo we just watch. It's been amazing how well she's done. She's been an inspiration to all. I'm sure your brother will be an inspiration to others as well. Keep strong! I'll be praying for him.

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