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Thread: Glioblastoma multiforme survival stats

  1. #1
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    Glioblastoma multiforme survival stats

    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.

  2. #2
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    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.

  3. #3
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    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.

  4. #4
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    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 Originally Posted by 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.
    b/o Bob 58yo
    dx 10 06 04
    GBM 4

  5. #5
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    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

  6. #6
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    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.

  7. #7
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    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?

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    re: radiation to brain

    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)

  9. #9
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    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?

  10. #10
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    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.

  11. #11
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    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.

  12. #12
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    Ditto

    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.

  13. #13
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    hello

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

  14. #14
    Quote Originally Posted by 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
    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/a.../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/q...&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.


  15. #15

    NCI Bethseda

    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??

  16. #16

    GBM long-term survivor

    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
    Last edited by brainman; 07-22-2011 at 07:33 AM. Reason: Link violation

  17. #17

    Re: GBM long-term survivor

    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.
    Last edited by brainman; 07-22-2011 at 07:35 AM. Reason: Link violation

  18. #18

    GBM survival

    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

  19. #19
    Administrator Top User brainman's Avatar
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    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?
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  20. #20

    What are the end stages like? this is scary

    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.

 
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