Glioblastoma Multiforme grade 4 Survivors?

My father, 59, was diagnosed on Dec.14, 2008, surgery to remove approx. 95% of the tumor on Dec.18th. Since the surgery he's completed 2 weeks of rehab and seems to be doing really well, along with current home rehab, although his short term memory is still a problem, and may never come back they tell us because of the damage the tumor did pre-surgery. Today will be the end of 3 weeks of radiation along with temador. The doctors told us that they are all about "statistics" and said the median life expectancy was 12-14 months. My father is a stubburn german, and was in excellent health until then. I am looking for success stories, advice, encouragement, etc. Thank you, Colleen

Yes it is all about statistics... somewhere in this message board there is a link to a hospital that shows bell curves based on ages and things... sort of helpful. I think attitude is as important as anything. My wife had a gbm IV removed in June of 06 and is still doing very well. Some short term memory issues, but still getting around great (driving, cooking etc.) when not recovering from the chemo. No other tumor related symptoms. Its the chemo that is dragging her down... I know its also helping keep the disease at bay, so that is the real issue for us. Good luck and keep a positive outlook!!!

If you were to "Google"  brain tumor survivors, you would find many stories of long term survivors.  The Virtual Trials web site has a lot of them.  I've said it before and I'll say it again.  I work at a relatively small institute and we have lots of long term survivors and every year host a party for them.  To be included you must be 3 years out from a high grade brain tumor.  Most of our survivors are GBM, but some have grade 3 tumors.  In 2008 we had 100 people we invited who met the criteria.  One fellow was 19 years out.  Another 17 years and many more in double digits.  This is a devastating disease, no question, but it can be beat.  These people are living proof that all stats are not written in stone.  To come to a median survival they take all tumor information and average it out.  There are many who survive a lot longer and many who do not.  There are always exceptions to every stat out there.  My opinion is to not focus on the stats.  It can be too depressing and while you're worried about that life will be passing you by.  Focus on the good response he is having to the treatments.  Let him be the fighter that his heritage has instilled in him.  Many people survive, why not him?

Lorre

 

On 1/30/2009 sumguy wrote:

Yes it is all about statistics... somewhere in this message board there is a link to a hospital that shows bell curves based on ages and things... sort of helpful. I think attitude is as important as anything. My wife had a gbm IV removed in June of 06 and is still doing very well. Some short term memory issues, but still getting around great (driving, cooking etc.) when not recovering from the chemo. No other tumor related symptoms. Its the chemo that is dragging her down... I know its also helping keep the disease at bay, so that is the real issue for us. Good luck and keep a positive outlook!!!

Thank you! My father is far from being able to drive or cook (well he never cooked to begin with). I am unable to find the link you were referring too, so if anyone knows of this link, please send it. thanks again!

 

On 1/30/2009 Lorre G wrote:

If you were to "Google"  brain tumor survivors, you would find many stories of long term survivors.  The Virtual Trials web site has a lot of them.  I've said it before and I'll say it again.  I work at a relatively small institute and we have lots of long term survivors and every year host a party for them.  To be included you must be 3 years out from a high grade brain tumor.  Most of our survivors are GBM, but some have grade 3 tumors.  In 2008 we had 100 people we invited who met the criteria.  One fellow was 19 years out.  Another 17 years and many more in double digits.  This is a devastating disease, no question, but it can be beat.  These people are living proof that all stats are not written in stone.  To come to a median survival they take all tumor information and average it out.  There are many who survive a lot longer and many who do not.  There are always exceptions to every stat out there.  My opinion is to not focus on the stats.  It can be too depressing and while you're worried about that life will be passing you by.  Focus on the good response he is having to the treatments.  Let him be the fighter that his heritage has instilled in him.  Many people survive, why not him?

Lorre

Wow... I can't wait for him to be 3 years out and join this group! He is no doubt the strongest man I have ever known....I just spoke to him as he has completed his 3 weeks of radiation and his hair is starting to fall out, his response "Let's take it all off", he says he has always liked the blad look...If anyone can beat this, it's him...he said he'll go fighting all the way, and guess what? I beleive him!!

 

On 1/30/2009 Bella117 wrote:

 

On 1/30/2009 sumguy wrote:

Yes it is all about statistics... somewhere in this message board there is a link to a hospital that shows bell curves based on ages and things... sort of helpful. I think attitude is as important as anything. My wife had a gbm IV removed in June of 06 and is still doing very well. Some short term memory issues, but still getting around great (driving, cooking etc.) when not recovering from the chemo. No other tumor related symptoms. Its the chemo that is dragging her down... I know its also helping keep the disease at bay, so that is the real issue for us. Good luck and keep a positive outlook!!!

Thank you! My father is far from being able to drive or cook (well he never cooked to begin with). I am unable to find the link you were referring too, so if anyone knows of this link, please send it. thanks again!

I think it may be,

http://www.neurooncology.ucla.edu/Performance/GlioblastomaMu

This is only the people treated at UCLA.

Best of luck to your father in his treatment.

Hi:

 

My wife was diaagnosed with GBM in June-07. Her scans have been cancer free since her second surgery in Oct-07. Slowly but surely overcoming some deficits frome the surgery she will be returning to full time work after this summer. She is taking only Avastin and Keppra.

Everyday is a gift, but all is Ok for us right now.

Hope this adds some incouragement.

Chuck

My mother was just dianosed with glioblastomas grade 4. the doctors told us with radiation up to 12 months.  my mother is 82, and a couple of months ago she was sitting with a 93 year old woman.  her doctor was treating her for a stoke.  she cant hardly walk, and she has no feeling in her right arm.  I took her to Jackson Tn. s(he lives in McKenzie tn.)  to the ER where they found the mass.  The niro dr. told us it is a grade 4, and they cant operate, because it would make her to weak.  So we are going to try radiation.  is there any survivors near her age.  should we try to take her to a more advanced cancer center.  If anyone has any suggestions.  it would be greatly appreciated.  I just lost my son 11/2 year ago.  I'm not over that, i'm not ready to give up my mother too.

sad, depressed and scared to death. 

my daughter was 7 when the DX occured. She is now 13 and was recently declared cancer free.

May God bless you and yours too

Hi - my husband was diagnosed with a GBM tumour February 06 (he was 56 years old at the time and had been in perfect health) and did the radiation, chemo drill for 10 months.  His MRI's were clear for 2 1/2 years and there was a regrowth in june 09.  He went back on temodal and his last two scans have been clear.  Aside from some problems with dates and numbers (I think that was pre-surgery tumour damage), he's pretty good.  He has been working full-time and thankfully living a full life.

We were also told the medium survivial rates were 12-14 months but sometimes you never know.  His coping mechanism has been to not read anything on the internet about brain cancer, to not ask his doctor anything about his prognosis (and I'm not allowed to ask anything in front of him).  So far, it's working for him.

Good luck and enjoy each day.

Sally