Searching For Successful Survivor Stories - Gbf

My husband (60 years old) suffered a seizure while driving home from work 3 weeks ago and was diagnosed with a brain tumor in the right temporal lobe.  The tumor was 19mm and they were able to remove it.  Biopsy showed it a Glioblastoma Multiforme.  He will begin both radiation and chemo next week.  Fortunately, he is healthy and has a great attitude so we are hopeful.  However, from what we have seen of the statistics seen grim and do not offer much hope.  We would love to hear about those who have survived for more than 5 years. 

I'm so sorry to hear about your husband, I remember what those first few weeks were like when my husband was diagnosed 8 months ago. I'm glad you found this message board now though, you'll find it a great source of support and information.

There is a website, Virtual Trials that has a section on survivors, read their stories, it gives us all hope.

http://www.virtualtrials.org/survive.cfm

You can also sign up for their newsletter which alerts you to new information on their website, clinical trials, and brain tumor news in general.

Best wishes to you and your husband and keep that positive attitude.

Nancy

**husband dx 8/07 GBM, surgery, 7 weeks IMRT radiation/Temodar, currently on 5/23 Temodar protocol, MRI's good 

you can go to www.jerrykline.com . He is a four year survivor but on his site there are others who have lived much longer. Good luck.

Diane

Check out www.TheCNI.org/braintumor

We host a long term survivor party every year.  The invitees are 3 or more years out from diagnosis of a high grade tumor.  Most are many years beyond that.  See the survivor stories also on a few of the patients.  I have one man 17 years out and a woman 11 years out.  This disease can be beaten.  Not everyone does, but there are many who do.  Also, do a survivors search on your computer.  You'll come up with lots.  I promise you.  Look at the American Brain Tumor Assoc, site for survivor stories and National Brain Tumor Foundation and look at David Bailey's site.  He's also amazing.

Don't give up hope. 

 

 

On 4/21/2008 nancya wrote:

I'm so sorry to hear about your husband, I remember what those first few weeks were like when my husband was diagnosed 8 months ago. I'm glad you found this message board now though, you'll find it a great source of support and information.

There is a website, Virtual Trials that has a section on survivors, read their stories, it gives us all hope.

http://www.virtualtrials.org/survive.cfm

You can also sign up for their newsletter which alerts you to new information on their website, clinical trials, and brain tumor news in general.

Best wishes to you and your husband and keep that positive attitude.

Nancy

**husband dx 8/07 GBM, surgery, 7 weeks IMRT radiation/Temodar, currently on 5/23 Temodar protocol, MRI's good 

 

Thanks for the info.  It is encouraging to know that we are not alone and that others have survived. 

 

On 4/22/2008 Lorre G wrote:

Check out www.TheCNI.org/braintumor

We host a long term survivor party every year.  The invitees are 3 or more years out from diagnosis of a high grade tumor.  Most are many years beyond that.  See the survivor stories also on a few of the patients.  I have one man 17 years out and a woman 11 years out.  This disease can be beaten.  Not everyone does, but there are many who do.  Also, do a survivors search on your computer.  You'll come up with lots.  I promise you.  Look at the American Brain Tumor Assoc, site for survivor stories and National Brain Tumor Foundation and look at David Bailey's site.  He's also amazing.

Don't give up hope. 

 

I checked out the stories and it was very encouraging to see those whom have survived.  We are believing that my husband will be one of them, too and we can encourage others.

I'll check out Jerry's story.  It is so encouraging to see that others have survived.

 

On 4/21/2008 sherid wrote:

My husband (60 years old) suffered a seizure while driving home from work 3 weeks ago and was diagnosed with a brain tumor in the right temporal lobe.  The tumor was 19mm and they were able to remove it.  Biopsy showed it a Glioblastoma Multiforme.  He will begin both radiation and chemo next week.  Fortunately, he is healthy and has a great attitude so we are hopeful.  However, from what we have seen of the statistics seen grim and do not offer much hope.  We would love to hear about those who have survived for more than 5 years. 

My husband,at age 58, began losing language one afternoon, after teaching all day and working out at home.  He had a seizure just as the ambulance got him to the hospital.  He was diagnosed with GBM and had surgery the next day.  That was October, 2004.  He then had radiation and Temodar, but by February the tumor was back.  He had surgery in March, and then was given the clinical trial of IL13, which consisted of pumping a drug onto his brain directly for 4 days.  It worked!  He was tumor free for 20 months!  Then in December, 2006 he had another partial seizure and the MRI showed that the tumor was back.  He had a resection and was given IL13 again.  However, this time it only gave him 4 months.  Doctors felt the current tumor is too close to the language area to operate, so he has tried Avastin and CPT11 for 4 months, then Tarceva and Rapamune for 2 months, but the tumor continued to grow.  However, during all this time, except for the 2 months on Rapamune, he was feeling great - surfing, sailing, hiking..(he had retired) Currently he is on a clinical trial of low dose daily Temodar, and amazingly, his tumor is shrinking!  It is back to the size it was last August.  So now at over 3 1/2 years, he is still hanging in there with a very positive affitude.  

Good luck with your husband.  Hopefully he will find treatments to buy him time and maybe they will come up with something that will really provide long-term help. 

 

 

On 4/21/2008 sherid wrote:

My husband (60 years old) suffered a seizure while driving home from work 3 weeks ago and was diagnosed with a brain tumor in the right temporal lobe.  The tumor was 19mm and they were able to remove it.  Biopsy showed it a Glioblastoma Multiforme.  He will begin both radiation and chemo next week.  Fortunately, he is healthy and has a great attitude so we are hopeful.  However, from what we have seen of the statistics seen grim and do not offer much hope.  We would love to hear about those who have survived for more than 5 years. 

II am not five years out, but ONEand still going strong...........I know you wanted to hear from five year survivors, I apologize for elbowing in.   When diagnosed I was told not to look at statistics on the internet as they will not give a true picture, as this is a situation where you cannot truly compare one with another, just exchange information....

David M. Bailey, 10 or 11 years out is a true inspiration for survival,

do look at his web, also the National Brain Tumor Foundation...

YOU WILL BE INSPIRED with H O P E.

Meanwhile keep the faith, the statistics are grim, the survivors are not.   You, your family and husband are in my prayers for HEALTH,

GRACE AND STRENGTH...

Frances

 

On 4/28/2008 Frances2 wrote:

 

On 4/21/2008 sherid wrote:

My husband (60 years old) suffered a seizure while driving home from work 3 weeks ago and was diagnosed with a brain tumor in the right temporal lobe.  The tumor was 19mm and they were able to remove it.  Biopsy showed it a Glioblastoma Multiforme.  He will begin both radiation and chemo next week.  Fortunately, he is healthy and has a great attitude so we are hopeful.  However, from what we have seen of the statistics seen grim and do not offer much hope.  We would love to hear about those who have survived for more than 5 years. 

Thanks for the encouragement and prayers.  This has been overwhelming for us to deal with.  However, we are encouraged by the many survivor stories we have found on the web.  Don't understand why the statistics are so grim when there are survivors.  Glad you are one year out and still going strong.  That's what we need to hear.  I did read about David Bailey and he is an inspiration.  Thanks for responding with such positive encouragement.

II am not five years out, but ONEand still going strong...........I know you wanted to hear from five year survivors, I apologize for elbowing in.   When diagnosed I was told not to look at statistics on the internet as they will not give a true picture, as this is a situation where you cannot truly compare one with another, just exchange information....

David M. Bailey, 10 or 11 years out is a true inspiration for survival,

do look at his web, also the National Brain Tumor Foundation...

YOU WILL BE INSPIRED with H O P E.

Meanwhile keep the faith, the statistics are grim, the survivors are not.   You, your family and husband are in my prayers for HEALTH,

GRACE AND STRENGTH...

Frances