Glioblastoma multiforme survival stats

Lorelei · New User Joined: 05 Dec 2004 Posts: 7 Location: Florida

I know someone who was diagnosed with a GBM recently. The prognosis is not good. Sad

I have been doing some research online to try and find some information to give some hope, but instead I am getting the impression that this is a very bad kind of cancer. Does anyone survive this? How many live 5 years? 10 years? The doctor has recommended Temodar (sp?) chemotherapy and radiation. Are there any new or better treatments available if this doesn't work? Thanks for any info you can provide.

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Hello

Unfortunately GBM has a long history of unfruitful studies, and very little improvement in prognosis over several years. The treatment that was recommended is the standard of care, and there is nothing better currently available...

The 2 year survival rate is about 9%, 5 year: 3% and 10 years around 1.7%. The big problem with glioblastoma is the aggressiveness of the tumor, and the difficulty of drug penetrating the brain tissue.

best regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

Lorelei · New User Joined: 05 Dec 2004 Posts: 7 Location: Florida

Thank you for the information. Even though it is not what we wanted to hear, it helps to know. This is a wonderful site for cancer patients. If there is anybody on this site who is in the 1.7% who made it to 10 years or know someone who has survived GBM, please post and let us know what treatment you received and how you are doing. Thanks.

fredfryguy · Posted: Mon Dec 06, 2004 8:58 pm Post subject: Ben W 10 yr survivor web page

Lorelei, Hi go here for info...http://www.virtualtrials.com/surviveben.cfm
May you and your family receive the support and information you need in this
journey. Fred

[quote="Lorelei"]Thank you for the information. Even though it is not what we wanted to hear, it helps to know. This is a wonderful site for cancer patients. If there is anybody on this site who is in the 1.7% who made it to 10 years or know someone who has survived GBM, please post and let us know what treatment you received and how you are doing. Thanks.[/quote]
_________________
b/o Bob 58yo
dx 10 06 04
GBM 4

Kristen · Experienced user Joined: 01 Nov 2004 Posts: 60

HI Lorelei,

I just happen to come across your post as I was logging into the breast cancer board. I just wanted to let you know about the American Cancer Society site. I know of two people on the brain cancer discussion board with gbm both of whom were dx at about the same time and live almost in the same area. Both men in their early 50's were dx in early 2003 (i think). Anyway I highly suggest going to that site as there are a lot of posts in the brain cancer board. Also there is a live chat there too!
I am afraid what Leo says is holding pretty true for GBM patients, its very sad.
Good Luck,
kristen

Lorelei · New User Joined: 05 Dec 2004 Posts: 7 Location: Florida

Fred and Kristen, thanks to both of you for these excellent links. I will go check them out. My friend has since opted not to do any trials and instead go for quality of life rather than quantity at this point. I am supporting this in every way I can. Our new motto is: No day but this day.

dolittle · Posted: Tue Jan 11, 2005 2:28 am Post subject: Glioblastoma

My father was recently (Dec. 22,04) dignosed with a brain tumor, at this point the doctors are suggesting radiation therapy. Does anyone know how well this therapy works? The doctors are still not sure if the cancer has came from any other part of his body, does anyone know what the likelyhood of it starting some where else and spreading to the brain?

hhmv73a · Experienced user Joined: 16 Jan 2005 Posts: 95

dolittle: whether rt will work from your dad's brain tumor depends on the diagnosis. if the disease is a mets from another organ (e.g., lung), radiation will provide palliation. if it is a GBM or other primary brain tumor, radiation only helps the symptoms too unless a special type of radiotherapy, stereotactic radiosurgery, is used.
you should talk to your dad's doctor to find out the diagnosis and th purpose of the treatment first. his radiation oncologist should have all info you need to know.

Let us know if you have further questions. You can also visit:
http://www.thecancer.info/brain/index.asp for more info on brain tumors.

Regards,

J. Jay Lu, M.D.
Diplomate, American Board of Radiology (Radiation Oncoogy)

dolittle

So am I to understand that the rt treatment will not work on this tumor? According to his doctors it will shrink the tumor. They have also recently found a mass in the chest, and are considering kemo. What do you think?

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Dolittle,

Radiation therapy can work. What he is saying is that it works better in metastatic tumors of the brain. Unfortunately, there are no guarantess that it will work.

best regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

hamily · New User Joined: 09 Feb 2005 Posts: 1 Location: Missouri

My brother has a glioblastoma and he has now lived almost 3 years since diagnosis. He has had surgery and underwent radiation and chemotherapy. My suggestion is to try everything possible and never give up hope. Last year he was hospitalized and I wanted him to get more help so I sent out e-mails on his story to every cancer hospital I knew of and received hundreds of responses and ended up taking him to NCI in Bethesda and they helped him tremendously. His life isn't what it used to be but he is still living and happy. Don't ever give up hope and try everything possible.

eden · Posted: Tue May 31, 2005 3:49 pm Post subject: Ditto

[color=blue]I agree Never give up my wonderful husband of 42 years was diagnosed [color=blue]with a grade4 glio last september .. he has since gone through a cranionomy to remove a 4x4x5 cm tumor he received all the latest therapies ... the internal and external radiation ... low dose temodar and a round of Ceenu ... the tumor returned and he is now on a high dose temodar ... he is fighting like mad to stay alive and to be with me and our 4 children and 5 grandchildren and wants to be around to see our first great grand child born in nov. He isn't living the way he used to or doing the things that he wishes he could do but we cherish every moment that we have together .. we laugh we cry and we hope and pray that soon there will be a cure for this horrible devastating disease. God Bless.[/color][/color]

Lee · New User Joined: 07 Jun 2005 Posts: 3 Location: Canada

Thank you so much. You have given me a ray of hope for my mom. She has GBM as well. I will keep hoping . . .

SLE · New User Joined: 19 Jun 2005 Posts: 2

[quote="leo"]Hello

Unfortunately GBM has a long history of unfruitful studies, and very little improvement in prognosis over several years. The treatment that was recommended is the standard of care, and there is nothing better currently available...

The 2 year survival rate is about 9%, 5 year: 3% and 10 years around 1.7%. The big problem with glioblastoma is the aggressiveness of the tumor, and the difficulty of drug penetrating the brain tissue.

best regards,
Leo[/quote]
Hi,

My father was recently diagnosed with a GBM. He's had a craniotomy/resection and is just now finishing his 6 weeks of radiation and Temodar (temozolomide).

I wanted to mention something to you about the survival rates you mentioned in your post. In the past, most survival stats did not look at patients receiving a concurrent combination of temozolomide and radiation. Since this is now the standard care, a new study was conducted in Europe in regards to the survival rate.

The results were: Median survival of all patients was 14 months, the 1-year overall survival rate was 72%, the 2-year overall survival rate was 30%.

This is a link to the study for anyone interested:
http://meeting.jco.org/cgi/content/abstract/23/16_suppl/1576

Also, it did look at people with good prognostic factors (which I feel my father has).

Here is another study showing a median survival rate of 16 months, and 1 and 2 year survival rates of 58% and 31%, respectively.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11870182&dopt=Abstract

I know it's still not very encouraging, but when our neuro-oncologist told us about the new studies and data, to me it seemed like all the time in the world, compared to what I was finding while I searched on the hospital's computers the night after he was diagnosed.

This is a nice forum, btw. This is the first time I've posted about my father's illness anywhere.

Smile

ceacker · New User Joined: 06 Aug 2005 Posts: 1

Has anyone heard of NCI Bethseda being a great place for glioblastoma multiforme stage 4 brain tumor treatment? My brother was diagnosed 17 months ago, had surgery, went to USC for gammaknife radiosurgery, did radiation, went through a clinical trial at UCLA which didn't work and now is starting Temador. Anyone else on Temado??

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