Glioblastoma Survivors

July 2, 2008 – 8:37 pm Dr. Leonard Cerullo

Senator Ted Kennedy’s shocking news gives us all pause. Even though I deal with news like his on a daily basis, the enormity of the national response has caused me to reflect on the less appreciated facts of his case. While glioblastoma (GBM) carries a terrible statistical prognosis, especially in older people, it is not a death sentence. Remember that statistics never apply to the individual. I, as most neurosurgeons, have patients who are living long after the diagnosis of glioblastoma was established. So why are these patients (survivors) different? Recent research at the molecular/genetic level indicates that there are many different types of GBM, each with different genetic abnormalities responsible for their growth characteristics. Age certainly plays a role, with younger people generally doing better than older. The location of the tumor may be important, especially in terms of the extent of surgical removal (reduction of tumor burden) possible. New chemotherapeutic and radiotherapeutic possibilities are proving helpful if not in “curing” them, at least prolonging meaningful life. Then there are the “intangibles”, which I personally feel make a difference. These include the attitude of the patient towards his/her disease. The aggressive fighter will fare better than the passive victim. Those with strong support systems, family and faith, will venture farther along the less proven paths. “Non traditional” treatment including acupuncture, meditation and nutrition may ultimately prove their value. All in all, glioblastoma is not a death sentence. It is a call to action.

Read more about the cutting-edge treatment of glioblastomas and other brain tumors at Neurologic & Orthopedic Hospital of Chicago’s Brain Tumor Center of Excellence

  1. 20 Responses to “Glioblastoma Survivors”

  2. My husband was just diagnosed with GBM, appreciate any updated treatments or hope.

    By Charmaine Ghent on Sep 5, 2008

  3. I was diagnosed May 9, 20008 after having a seizure on 5/6,08 and ultimately had the tumor removed on 5/9. Size was less than a cm. (which was good news)
    Absolutely explore non traditional things, such as Reiki, Healing Rooms, Faith Healing, and keep up that agressive fight!!!
    For me PPB works well - keeps me positive -
    (PRAYER AND PEANUT BUTTER) My grandma told me when I was growing up - peanut butter is good for whatever ails you!!!
    I have a Healing Room at my house (as well as the one I go to weekly at a local church) which I go into and pray as often as I can.
    I went back to work (at least 1/2 time and more) 2 weeks after I got out of the hospital (for the brain surgery)
    My Radiology Dr. told me that the hair I lost as a result of the radiation would not come back - WRONG - IT IS GROWING BACK FAST. (Lost it in July & August). It was on the top of my head - as big as a coffee saucer. The Healing Room and the ladies who operate it seem to have had success again!

    By Pat on Oct 31, 2008

  4. Never give up the fight!!!!

    By Pat on Oct 31, 2008

  5. Hello Charmaine,

    My husband as well, has been diagnosed with GMB.. he has been fighting his illness since June of 2007… He is my hero… if you need to talk…please feel free to email me….. thanks, and god bless…

    By Nancy on Nov 1, 2008

  6. To all who are fighting the horrible disease…my thoughts and prayers are with you. I run a non-profit organization in memory of my mother who lost her battle with GBM in May of 2003: http://www.fightbraincancer.org. There are message boards on the site that I’m hoping will help connect people and provide encouragment, information and support. Our mission is to help people fighting GBM spend more precious time with loved ones through educational, financial (through grants to major cancer hospitals), and emotional support.

    God bless,
    Leigh Anne Tibak
    President
    The Susan E. Lusty Glioblastoma Foundation

    By Leigh Anne Tibak on Dec 23, 2008

  7. Dr. Leonard Cerullo - Thank you…..Finally! A doctor who describes “GBM” as not being a death sentance. I hope we see this kind of information more often form the medical community for the newly diagnosed.

    You have coined it correctly. “a call to action”. Much of the information on the internet is outdated and negative for this disease. There are many factors involved, as you mentioned, as with any disease. There are a number of promising treatment options out there that have proven sucessful for many people. There are many success stories. They are all over the internet from all over the world. Their stories and your statement prove that research and development of new treatments are working for many. Much more research and treatments need to occur. ( The current stats are old ) Much more work needs to be done as there are no regular screening process to catch a GBM early before it becomes too agressive and large, (like for Prostate and breast cancer).

    Thanks again

    By Robin on Jan 21, 2009

  8. My father was diagnosed with a grade 4 glioblastoma in February of 2005. He had surgery to remove the tumor from his left temporal lobe, followed by radiation and chemo with temodor. He has now had 4 years without recurrence. He is doing pretty well. The main problems are severe itching which are somewhat controlled with prednisone, memory loss (especially of names). Some physical weakness, but better now that he started using poles for walking. He is 79 years old. It has been a difficult journey for all of us, especially my mother who is the primary caregiver and tireless, who has taken on almost all of the household responsibilities. The hardest thing for both of them is loss of the social network, of which they had been such an integral part. Their lives are much more isolated. However, they go to a drawing group every week. My father continues to sculpt, even when talking and reading have become difficult.

    thanks so much for your words of encouragement!
    than

    By Deborah on Mar 12, 2009

  9. wow deborah, 4 years with no recurrence.thats so.wonderful my 24 year old son was diagnosed early may 2008 gbm stage 4.had a total resection to remove a 2cm tumor. is doing fantastic no deficits but regardless can’t help but think what tomorrow will bring. i’m sure that all of us who have a loved one can’t help but be totally consumed by this horrible diagnosis. every day, month and hopefully years that go by is a miracle to me and a blessing.may we all be able to see them beat this monster. and also if anyone can post some positive sites of long term survivors of gbm. it would greatly be appreciated

    By divina on Mar 17, 2009

  10. hello all my father is also suffering with gbm grade 4
    He had surgery to remove the tumor from his left temporal lobe, followed by radiation,and he is about start chemo for 6 months (5 days in a month).. he is doing good but suffering with memory problem..and his right han and right leg is not that supportive as left hand and left leg…how long he has to face this memory problem ..we are worrying..hows health wll be can any body please give information abt survivals and these side effects like memory loss…and other side effect

    By Haritha on Mar 25, 2009

  11. heyy Deborah can I have a chat with u.. regarding GBM..as we r very scare with my fathers health..could u please ur number or mail..appreciate if u share ur experiences..

    By Haritha on Mar 26, 2009

  12. Divina, my 21 year old son was diagnosed with a GBM May 14, 2008. His surgery was successful, but he is still struggling with paralysis of his right hand. He has been battling brain swelling since his radiation and chemotherapy last summer. He is currently undergoing a clinical trial of Azixa and carboplatin which has worked wonderfully. He is finally off of steriods that he has been on since July 2008. We are hopeful that he will have a much better summer this year!

    By Laurie on Apr 2, 2009

  13. Hi Laurie, so glad your son is doing well.my son was taken off the steroids around the same time as your son.yes he’ll do better without them.my son was started on a dose intensive trial of temodar and so far so good.his next mri is 4/10.we’ll be on pins and needles as usual.we pray it comes back clean.Laurie, how do you cope with this whole thing on a day to day basis? it has emotionally drained my husband and I. Our faith is what helps to keep us going.are your sons doctors optomistic. what do they tell you? Divina

    By divina on Apr 6, 2009

  14. I was diagnosed June 30,2008 I had surgery followed by radiation and temodar. I am currently taking temodar every 28 days for five days. It leaves sick for about two weeks a month nothing seems to help that. I was also told maybe six months due to the size and nature of glioblastoma multiforme grade 4. I am nine months out and will soon have a MRI to see the growth ect. It is very good to see some have made it years I am trying to stay strong and hold in there for my family.

    By Lloyd on Apr 22, 2009

  15. Husband diagnosed in Aug 2006 GBM stage 4. Had surgery, radiation and chemo. Diagnosed again in May 2007 had another surgery where Gliadel Wafers were placed in resection. Did real well for 2 1/2 yrs. Now weak and has some memory problems but still has a strong faith and it keeps him going. Has been an up and down road for us. But so thankful for the time we have. Going back for new MRI on 5/19. Pleae pray for both of us. Thank you.

    By Leona on May 17, 2009

  16. My dad was diagnosed with GBM stage 4 at the end of May 2008. It is inoperable and its the size of a large marble. He had a brain bleed due to the cancer and it made him paralized of his left side. He is doing temodar and radiation and in only three weeks into it the tumor has shrunk by 10%. He is getting another MRI in three weeks to see more results. We are a family of faith and he is slowly getting use of his muscles on his left side. Things are looking good right now. My only advice to people is to stay strong, have a good attitude and keep your faith in the one and only true physician.

    By Jenny on Jun 4, 2009

  17. my mom was diagnosed with GBM stage IV end of february 2009, she had surgery, the drs removed most of the tumor, it was the size of an orange, she received radiotherapy and now receiving quimo, (temodor) ,she has not had any side effects at the moment, only memory loss. She couldnt even walk before the surgery, so she is doing great now. Her next check up is next month. I strongly believe that staying positive and giving everything to god is essential, family members we need to believe that what our loves one are going through is one step closer to the cure

    By ivonne on Jul 2, 2009

  18. My husband was diagnosed with GBM in October 2007. He had surgery to remove the tumor (front left) and a gliadel wafer was inserted. He underwent radiation and is still taking temodar five days every 4 weeks.

    He was given 12 to 15 months to live and is doing pretty good now. He is very tired and has some memory problems.

    He also acts in anger more than before - seems to be something that is uncontrollable. Has anyone else experienced this side effect?

    By Wanda on Jul 21, 2009

  19. My sister’s mother-in-law was just diagnosised with this horrible brain cancer. The doctors were unable to remove the whole thing. Does anyone have any suggestions for them to go and get a second opinion?

    By Elizabeth on Jul 25, 2009

  20. been 14 months with gbm4, been on temador, has anyone been on temodar more than a year, please let me no. thank you

    By george on Jul 29, 2009

  21. My sister was diagnosed today with GBM stage 4.
    Surgery went well and they removed a golf ball size tumor. The treatment suggested is, radiation and chemo at the same time for 6 weeks. I have noticed on this website that for most patients, the treatment plan is well over the six week time period given my sister.
    Also, we were told that no further treatment plan is scheduled after the initial six weeks.
    This sounds like a doomsday scenario to me.
    Any comments or suggestions would be greatly appreciated.

    By Adonna Wilson on Aug 1, 2009

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