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Lorelei
12-05-2004, 05:16 PM
I know someone who was diagnosed with a GBM recently. The prognosis is not good. :( 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
12-06-2004, 11:29 PM
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

Lorelei
12-06-2004, 11:55 PM
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
12-07-2004, 01:58 AM
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


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.

Kristen
12-07-2004, 02:00 PM
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
12-13-2004, 04:25 PM
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
01-11-2005, 07:28 AM
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
01-18-2005, 07:14 AM
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
01-21-2005, 10:59 PM
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
01-22-2005, 10:11 PM
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

hamily
02-10-2005, 01:56 AM
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
05-31-2005, 09:49 PM
I agree Never give up my wonderful husband of 42 years was diagnosed 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.

Lee
06-08-2005, 03:46 AM
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
06-20-2005, 05:48 AM
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
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.

:)

ceacker
08-07-2005, 04:28 AM
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??

KMT
02-02-2006, 01:20 PM
Hi,

Ever since my mother was diagnosed with GBM Stage IV in September 2005 I have been searching for every possible treatment. On my searches I have only come accross one long-term survivor (I do hope there are more). She has a website with her testemonial. Please note that I do not know her personally, and have never spoken to her. I am sending this as a source of information and hope.


Take care,

Karin

grana
02-03-2006, 03:46 PM
Well Kmt, I'm italian and I've got the same problem with my father. He had diagnoses GBM on january, 2005. Ordinary treatment do not have good result, a new treatment (for people who have or no have surgery options) is called Tarceve. Find it at . The project is called 26041. Try it.

totoro-dave
02-10-2006, 03:55 AM
Lorelei:

My father was diagnosed with a GBM on the day after Thanksgiving, 2004. The doctor told us that without surgery he would be dead in 3-6 months, with surgery, radiation and chemo he could possibly live another 18 months.

The initial surgery went well, but the radiation really sapped his strength. He was also on Temodor, which works in conjunction with the radiation. The toll the radiation and chemo takes on the body and spirit are almost as bad as the disease.

The GBM came back with a vengence and he died on June 4, 2005. It was an ugly way to go.

Dad's oncologist said he knew of one of his patients who had survived more than 5 years---everyone else was dead. I think the best thing to do for loved ones with a GBM is to just be there for them---help them to live and help them to die. My brother and I were able to care for our dad from the diagnosis until his death. Dad got to die at home which was what he wanted.

There's not a day goes by that I don't miss him.

Best of luck to you and your friend.

Dave

brainman
02-10-2006, 05:37 AM
I totally agree with Dave. My mother died due to a GBM in 1998. She lived only two months after diagnosis. Where Dave's father opted for full treatment in the hope of 18 more months of life (and it could have been more… much more), my mother opted just to come home and live what little life she had left to its fullest. That choice is an extremely personal one and I am not saying that either was right or wrong.

In 1992, I was diagnosed with a related primary brain cancer. Whereas a GBM is a grade IV cancer, mine was only a grade II… but involving the same family of cells. I opted for a year of hell and in return, well, here I am. Last summer, the cancer returned. This time it was a grade III. It was still relatively small and so I elected to have it surgically removed followed by radiation. Will I live another 12 years? No one can say. The statistics are not in my favor. However, I always remind myself that they are just statistics and that I am alive today. So, what kind of trouble can I get in today?
:lol:

liat_l
02-25-2006, 03:32 AM
I feel terrible asking this of those who have suffered losses, but I just need an idea... My dad was diagnosed late Oct. with a grade IV GBM. Though has gone through partial surgical removal and radiation therapy in conjunction with temodar, the last MRI showed that the thing is indeed growing, now back at 4cm only 4 months later, and worse off- my dad is losing almost all control of his left side, and drifts in and out mentally more and more. This past week it seems to have gotten so much worse I wonder- is this it? How does it happen? Will it be painful? Will the seizures get worse as a result of the edema? What stages can I expect?
I looked into a clinical trial that utilizes 'gene therapy' following a resection, through the cultivation and insertion of the diptheria toxin using catheters... It seemed extremely promising, but after seeing my father, the professor hinted that usually when the patient exhibits such poor performance levels, aggressive treatment is ill advised, and may not necessarily improve the quality of life. We just came back from another CT to see, after the results come in, if the trial is still possible for us (if the cells are relatively contained in the initial one area)... It's so confusing- my mother and I dont want to give up but at the same time- will it be worse after the procedure or during? Is there anything to lose? I don't know how to think anymore so if there's anyone out there that knows what i'm talking about i'd be really grateful for a reply.

brainman
02-25-2006, 11:53 PM
liat_l, unfortunately, I do not think anyone can answer your questions with any degree of certainty. My mother's death of GBM was extremely peaceful. But there are so many factors involved… location being one of the primary ones in this case. My mother did not have seizures… she just gradually slipped away.

Is your father on any anti-seizure medication? I would ask his oncologist about palliative care for your father. It is not giving up that is hard. It is letting go.

My deepest and most sincere prayers are with you.

The Orlando Kid
07-17-2011, 02:28 PM
I am a Partner In Hope for St. Jude Children's Research Hospital and recently received an update on treatment being given to a 7 year old female. Can't say I ever heard of this cancer so I did a quick goggle search and bumped into this site. Anyway, I don't know what the survival rate is today, but St Jude Children's Research Hospital states they offer cutting-edge treatment options for children with glioblastoma.

NikosF
07-21-2011, 04:16 AM
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

+1 - Ben Williams is an incredible resource for the GBM and glioma community. His philosophy is certainly guiding my treatment for a GBM.

There's lots to throw in along with the base temozolomide and RT - for example Celebrex, a calcium channel blocker and chloroquine during radiation.

THere are some interesting things to throw into the mix post RT as well - Tarceva as mentioned and Plerixafor (AMD3100).

This is a disease that can, and ought to be fought. The statistics are grim - but there are people that beat this d@mn thing.

http://www.virtualtrials.com/ is a great resource, and the long-term survivor section is inspiring : http://www.virtualtrials.com/survive.cfm

Rhonda1210
03-08-2012, 03:43 PM
Hi all-
I'm not sure exactly what to say here, but I feel compelled to give a brief summary of my mother's story. Forgive me if I misspell some terms here.

She had a Gran Mal seizure on day in early 2000, which led docs to discover Glioblastoma. She was 52, had no headaches or anything before and had been a little overweight but healthy. They gave her 12-18 months to live. She had the tumor removed but they said it would grow back & she'd probably need future surgeries. She did agressive radiation for a couple of months. She was headed to MD Anderson Center to learn about (try?) some new treatment methods. When she got there, they found no cancerous cells. We are believers in the power of prayer and that the Lord is the Mighty Healer, and I think her story is evidence of a miracle in our lives. She has never had re-growth, and was able to stop the medicine they said she'd have to take for the rest of her life. She does have some memory trouble and has had to take a nap about every day, gets tired easily. There are also some other "common" health problems but I do not think they're cancer-related, just diet or age related.

I don't have her medical records, and don't remember a ton of details (I was younger), but can try to answer any questions. Or I could just ask mom I guess! Even if your loved ones are not survivors, I hope that this can strengthen your beliefs in the power of prayer and of Christ's evidence in the world today.

stageleft
03-08-2012, 06:35 PM
Thanks for sharing your Mom's story of hope and survival. Too often, we hear of short survival times of glioblastoma patients. Any time a cancer patient is in remission is a cause for celebration. I wish your Mom many more years of enjoying life.

ABBIEgbm13
03-20-2012, 07:08 PM
Just wanted to spread the word... there are GBM Survivors out there and I am one of them, one of the lucky ones. I was diagnosed at 21 with a right frontal lobe baseball size tumor. I had a craniotomy with a full resection, 6 weeks of radiation with chemo followed by 18 months of temodar chemotherapy. I am now 29 years old and can happily say I am an eight-year Brain Cancer Survivor!

“You don't know it yet, but we are the lucky ones”

Rhonda1210
03-22-2012, 02:21 PM
Abbie, thanks for sharing your story! Yes, you are a lucky one...a blessed one. I hope you do wonderful things with your life, in honor of those who cannot.

jigpatel
03-26-2012, 08:24 PM
I was diagnosed with GBM in Sept 2002...the tumor was the size of a golf ball in the left frontal lobe. I knew something was wrong when I began to get headaches and nausea that couldn't be fixed with over-the-counter medicine. I also lost feeling in the ring and pinky fingers on both hands. I didn't think it was too serious at the time so you can imagine my surprise when my doctor told me it was a brain tumor. (I was 25 at the time). I ended up going to Duke in Durham, NC for treatment and very proud to say I am 10 years cancer-free! My treatment started out with radiation for 6 weeks along chemo (Temodar, CCNU, Celebrex, etc) for a year.
I know that others have not been so fortunate and my heart does go out to those families. I just wanted to share my story so that others will know there are survivors living longer.

jpearson
03-26-2012, 09:53 PM
Thank you for your words of encouragement and support. Its great to hear there are those that are doing good for many years.
josh

acertuono
04-02-2013, 02:45 PM
I am a 4 yr survivor was treated at Duke , I'm also a Vn Vet. along with 5 others Duke is treating ,my Dr is convinced that is was caused by Agent Orange exposure.
All of our tumors is are the frontal lobe ,but the VA denies this was the cause.have apealled there determination will find out the results in July they want us to die before they rule but I don't anticapate dying
pardon all the miss spelling

stardome
04-04-2013, 09:00 PM
wow...what a story. keep on fighting :)

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