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Jennifer Heisler, RN

What is a glioblastoma multiforme (GBM)-Senator Ted Kennedy's Diagnosis of Glioblastoma Brain Tumor

By May 20, 2008

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The media has been using the term glioblastoma multiforme, (pronounced GLEE-OH-Blast-oma) quite a lot lately. Senator Ted Kennedy's seizures and hospitalization have lead to a diagnosis of a glioblastoma, a type of brain tumor that is very difficult to treat.

A glioblastoma can form in all areas of the brain, but typically form in the white matter, or deepest areas. Glioblastomas are often treated with surgery, which usually extends the life of the patient, but even with aggressive surgical removal of the tumor, chemotherapy, radiation and medication the survival rates for patients with glioblastomas are very low.

Unfortunately, most patients do not realize there is a problem until serious symptoms like vision problems, seizures, memory loss and severe headaches start. By the time the symptoms are noted, most glioblastomas are very large and too advanced to provide the patient with more than comfort measures.

In some cases, surgery will be performed to provide pain control for patients with glioblastoma, rather than for a cure. By reducing the bulk of the tumor, the pressure inside the skull is reduced, and headaches are diminished.

Find more information and support for glioblastoma.

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Comments
June 2, 2008 at 8:12 am
(1) Mike says:

My mother had this (glioblastoma multiforme) last summer. she was 68. she did all the chemo/radiation and was quite a fighter during the treatment. she worked hard to beat it. The doctors said without treatment she would live 90 days, with treatment the median lifespan was 1 year.

She lasted less than 90 days.

She did ok for 2 months, then she went downhill quickly.

June 3, 2008 at 5:32 pm
(2) surgery says:

I’m very sorry to hear about your Mom, I cannot imagine how hard it must have been to watch her decline so quickly when you were expecting more time.

Glioblastoma is an aggressive disease that seems to defy even our best doctors. Perhaps the high profile nature of Ted Kennedy’s case will bring more money to Glioblastoma research and treatment.

I know I would like to see stories like yours made history.

August 6, 2008 at 8:42 pm
(3) Me says:

My father and my brother in law (unrelated to each other except by marriage)both lived about one year with GBM. Personality changes and some crazy behavior from both of them. Ted K. will be blessed hugely if he can live more than a year and a half or two. It is brutal — my father was 69 and my brother in law was 49. It typically hits men in their 50s but women can get it, too.

August 7, 2008 at 9:50 pm
(4) surgery says:

I agree. Even with debulking surgery the prognosis for Kennedy is bleak. The upside is that many patients who opt for debulking surgery have less headaches and better quality of life after surgery.

I’m so sorry about your family members. I can’t imagine what it must have been like to watch one family member die, only to find out it was happening again.

January 27, 2009 at 5:27 pm
(5) Colin says:

I am also sorry to hear and I possibly going through the same thing. My grandmother died of glioblastoma 16 years ago and now her daughter, my mother, has a brain tumor. She is going in for surgery tommorrow and we will find out the outcome. I am so terrified I can barely make it day to day. Something needs to be done about this disease, it is such an awful way to die.

January 28, 2009 at 3:55 pm
(6) surgery says:

Colin,
I am so sorry about what you are your family are going through. Gliomas are such a terrible thing and our treatment options are so limited.

It is heartbreaking to know that there is no real cure, only treatment that may improve the quality of life.

To go through this twice has to be incredibly difficult. I’m sorry for your loss and your mother’s illness.

February 4, 2009 at 5:51 pm
(7) Charlotte says:

My 50 year old mother died of GBM over a decade ago now, and her mother (my grandmother), suffered 3 brain haemorrahges, the 3rd one being fatal. My maternal grandfather suffered epilepsy all his life.
I am reading on some web sites that family history of brain tumors is insignificant and then on others that those with a first degree relative getting the disease are twice as likely to develop the same problem.
I remember my mother used to use a lot of artificial sweetner in her decaf coffee and colour her hair a lot – also possible causes.
If anyone can offer any more info on this type of cancer, I would be grateful, more research needs to be done to find a cure.

February 5, 2009 at 2:10 pm
(8) Lina says:

My mother is suffering from GBM as well. She is 73 and underwent a complete resection of her tumor. Some complications during surgery forced her to be hospitalized for 13 weeks then she spent 5 weeks in rehab. She has been home now for 7 weeks and can not be left alone. In the last couple of days she has dramatically deteriorated. She is no longer able to walk and can barely hold herself up. She is now experiencing a seizure every 2 weeks (she has had 3). Is this something to be expected? Is there any documentation for caregivers about what to expect after treatments and towards the end?
Best Regards,
Lina

February 5, 2009 at 3:40 pm
(9) surgery says:

It is clear to me from all of your posts that there is a true lack of support for the families and loved ones of people who suffer from this terrible disease. For that reason I created a brief information sheet and a thread about glioblastoma support in the forums.

It is my hope that you can support each other and learn from each other there.

Here are the links:

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Find more information and support for glioblastoma.

February 25, 2009 at 1:06 pm
(10) Lisa says:

Hi, Last friday my mother in law was diagnose with this my husband hope they can cure it, but I know that is not so 40 year ago my grandfather had the surgery and died 3 months later and 20 years ago my uncle not realated.
my mother in law has 3 tumors she is already losing her merory and feeling in her legs they are talking about chemo and radiation therapy. Hre turmors are not operable they give her 6 to 18 months from last week to this week she does not have a conseption of where she is. What are we looking at?

February 25, 2009 at 1:27 pm
(11) surgery says:

I’ve created two threads in the forum area to address common questions about GBM and to provide an area where people affected can talk to each other.

What to expect when someone you love has a GBM: http://forums.about.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=ab-surgery&tid=118

Talk to others about GBM: http://forums.about.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=ab-surgery&tid=119

I hope this helps and feel free to ask any questions you may have. If I don’t know the answer, I will find out for you.

June 3, 2009 at 10:04 pm
(12) ISABEL says:

MY FATHER AGE 56 JUST HAD A SURGERY REMOVING AT LEAST 95% OF THE BRAIN TUMOR. RESULTS CAME BACK AS GBM. I KNOW THAT UNFORTUNATELY THERE IS NO CURE AND EVEN WITH TREATMENT IT DOES NOT HAVE A HIGH SURVIVAL RATE.LOOKING AT MULTIPLE SITES IT IS SAID THAT EATING HEALTHY, EXERCISING AND STAYING STRESS FREE CAN PROLONG LIFE.

June 25, 2009 at 2:00 pm
(13) Lisa D says:

My mother had GBM the tumor was removed (95%) in March she has gone through radiation and most of her chemo tag along and will get chemo again in a month for 6 months, no one will give me any idea what I am in for she has signs of dementia and she is pretty weak.
I am the classic sandwich generation, she lives with us and I have three young children what kind of time frame do we have?

August 26, 2009 at 10:16 am
(14) Ted says:

My mother also died of GBM a few years ago. She was diagnosed in July and passed away the following February. I missed her so much (she was only in her 60s). It is indeed a terrible disease. Most oncologists seem to have given up on this disease and simply prescribe palliative care. More research needs to be done, and physicians need to be more courageous in their treatment.

August 26, 2009 at 1:11 pm
(15) Janie says:

My son-in-law is 13 months past diagnosis of inoperable GBM. Just found out it is growing again. So many advances in cancer treatment and they can’t seem to get a handle on this one. He’s 24.

August 26, 2009 at 1:15 pm
(16) Renee says:

My mother, age 69, was diagnosed with GBM in January, 2003, after experiencing symptoms for a month while doctors determined the cause. She was bedfast by the end of March, turned 70 in April, and was gone in early September. I wish to high heavens she had not had one radiation treatment or one ounce of chemo, and I still blame the money-grubbers of the medical community for offering it to her. Their pockets were full while Mother “lived” an additional few months—flat on her back, totally helpless, and hardly able to see, hear or talk. Her father, too, died of GBM way back in 1968, and believe it or not science has made ZERO progress in treating this disease, as Mother’s treatment now in the new century was the same as his was in the 1960s. Now, Mother’s brother has recently passed of the same disease. Makes one wonder what’s ahead for me and my three brothers. As for me, unless the medical community can offer me a CURE, my family can keep the $$$, and I’ll say “Hello, Heaven!”

August 27, 2009 at 4:02 am
(17) Wilbert says:

Thanks ‘surgery’ for creatng those blogs and providing all that information.

I just posted there myself about our son who was diagnosed with GBM this yar at 17 months old. He is 22 months now, with 2 surgeries, radation + concurrent chemo behind him. And starting chemo for one year next week.

Ever since his diagnosis I have been reading a lot about cancer, brain cancer and specifically GBM. I echo the lack of advances wrt. to GBM treatments.

August 27, 2009 at 12:53 pm
(18) Renee says:

I am particularly touched by your message, Wilbert. I can hardly imagine your grief at watching GBM at work in your little man. If he were my child, I would be nearly frantic to read anything that might shed more light on this disease, and of course for ANYTHING that would give me hope of something I could do to help him. Seriously, you and your family have my prayers.

August 31, 2009 at 10:00 pm
(19) Joshua says:

Hi theare ,

Last week my father was diagnose with GM..He develope in a little while a very agresive behavior and lies all the time . Thats normal?….

September 1, 2009 at 8:36 pm
(20) surgery says:

Joshua,

I’m sorry to hear about your dad. Confusion (rather than lying) and aggression are both symptoms that can occur with GBM. The symptoms vary based upon where the tumor is located in the brain.

I hope you will join us in the surgery forum (surgery.about.com/forum) where there are other people whose loved ones have been diagnosed with the same illness.

September 3, 2009 at 6:48 pm
(21) Anette says:

My father passed away June 2009 after battling with GBM for about 5 months. He was a very strong man and it was really hard to see him so dependant on others to perform daily functions. In his last days one website that really helped me and my family was http://www.brainhospice.com. They provide much information about what to expect when that time comes. Within this website they talk about the “Hidden Under Our Hats” program which raises awareness about the severity of this disease and the need for further research. This is something we can all do to help beat this horrible disease. LETS SPREAD THE WORD TO BEAT THIS DISEASE TOGETHER.

September 4, 2009 at 4:09 pm
(22) Cliff says:

18 years ago we lost our first son to this nasty intruder GBM-4. He was one month short of his 9th birthday. We battled for 5 months (surgery & chemo), and had some real peaks and valleys along the way. 18 years later we still wonder…why and how does one so young end up with this? Will we ever know its cause?

September 17, 2009 at 3:37 pm
(23) Raquel says:

Hello, My father was diagnosed with GLio tumor, june of 08, he had surgery and had the tumor remove, he had radiation, and chemo, but the tumor grew back again, and he had 2nd surgery july 09. the doctor told me they are trying to expand his life time to 11 month. that was 2 month ago. The thing is that know his having paranoid behavior he thinks that some of his family members wants him dead and he has become violent, We dont know what to do, It kills me to see my father this way. He supposed to start treatment on October 09 (chemo), lets see how this goes, his not taking his medication the way he supposed to, he refused to, I Dont know what to do,

September 17, 2009 at 5:01 pm
(24) surgery says:

Raquel and all,

You are not alone. I wish it was not true, but there are many people out there living with a family member with GBM. I invite all of you, if you are interested, to the surgery forum. (surgery.about.com/forum) where we have a support group for people who are in your shoes. There is also information there about what you can expect as the disease progresses and more.

February 24, 2010 at 9:10 am
(25) De;; says:

My husband passed away from glioblastoma multiforme, after only 61 days. This is from the first seizure to the end. We only know about the cancer for two weeks. Is there anyone out there that has been through this so quickly? I am having a really hard time dealing with losing him so quickly.

Thanks

February 24, 2010 at 4:46 pm
(26) surgery says:

De,

If you check out the forums at surgery.about.com/forum you will find several conversations there that include dozens of people who are living with a loved one or have lost a loved one with a glioblastoma.

They can certainly share their experiences, some of which are very similar, with you.

March 7, 2010 at 2:44 am
(27) matt says:

My mom was diagnosied with GBM Sept 2009, chemo and radation, dexamothisnie, and Temodor were her treatment. tumors too deep to operate. she died in early Feburary of 2010. She fought to surrive for 5 months. it was very horrible, we used hospice at home who were fantastic, shorthly after end of radation treatment she went down hill fast and slipped into coma. She was 79, God bless all Families fighting this horrible diases.

May 5, 2010 at 4:09 pm
(28) Cindy Saunders says:

I am absolutely horrified to read all these notes. My mother, 75 has just been diagnosed with inoperable GBM…. we waited (what seemed so long) for this diagnoses. What a horrible – horrible thing to happen to any person and loved one. My heart is breaking reading everyones story…. I am trying my best to read up on everything and one of my biggest fears is that my mother is just going to ‘give up’ They are saying Radiation is the course of action…. I’m afraid she will decline and play the hand she was dealt. I have already seen a huge decline in her since this first came to light 5 weeks ago :(

My heart goes out to everyone…. strength in numbers they say… so…count on me to help with getting the word out!
Cindy

May 7, 2010 at 12:23 pm
(29) nikki says:

My husband age 72 was diagnosed with GBM oct. 09. Chemo (made him so sick it had to be discontinued), and radiation both done. Surgery to debulk done Oct 28. He hasnt had one decent day since. Can’t sit up, can’t walk, no bowel or urine control, total confusion, vision difficulty, incoherant, ‘picks’ at imaginary things, talks to imaginary people and dead people. Paralysis setting in, mostly lies in an ‘S’ shape. In care of hospice since January. Sorry we did anything! A great man brought down way too fast.

June 5, 2010 at 10:18 pm
(30) Carolynn says:

My daddy who is 68 was diagnosed with stage IV glioblastoma. He though he was having a stroke, slurred speech and drooping on his left side. He got a catscan and they found two tumors…….had an MRI only to discover that he has 3 plum size tumors. A craniology was done, but nothing could be removed. They gave him maybe 3 months without treatment, 4 to 6 with treatment. He is already coughing, gargly, and extremely slurred speech. I need to know what to expect and how long we have with him.

June 6, 2010 at 11:00 am
(31) surgery says:

Carolynn, I’m very sorry to hear of your father’s diagnosis. This link leads to some basic information about what to expect after the diagnosis of a glioblastoma.

No one can predict with absolute certainty what will happen, or how long he will be with you, but I hope this information will help. http://forums.about.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=ab-surgery&tid=118

September 24, 2010 at 12:29 pm
(32) Joan Davis says:

My sister died at 67 three years ago from GBM. Since then, I have been reading as much as I can about this horrible disease. Some people believe that there is a connection with vinyl chloride and GBM. Does anyone have any info on this.

October 10, 2010 at 9:25 pm
(33) brian says:

The following is my father’s HPI:

Pt is a 64 y/o W M with a h/o GBM dx and resected on June 9th, 2009. On May 28, 2009 pt had his first sx’s (a generalized tonic clonic seizure lasting less than 3 mins) and was rushed to ED where approx 3 cm lesion was seen on imaging in right parietotemporal region. Pt had between 90-99% total gross resection and received Gliadel wafers and same day gamma knife. On pre-planning imaging (just prior to starting radiation) a new 1 cm lesion was noted superomedially to resection site. This raised suspicion for new tumor growth versus pseudo-progression 2′ to stereotactic radiosurgery. This lesion was included in the radiation field. Pt received concomitant temozolomide with radiation and elected to begin Avastin therapy a week prior to finishing XRT. Pt has been on Temodar(5/23)/Avastin(q 2 weeks) ever since. Temodar doses have been variable over the past year 2′ to thrombocytopenia and adjusted accordingly to minimize bone marrow suppression. Pt endorses fatigue while taking Temodar, but denies headaches, N/V/D, abdominal pain, palpitations, chills, hair loss, fever, dizziness, neurological deficits, seizures, or other complaints since the surgery.

October 10, 2010 at 9:26 pm
(34) brian says:

I have been reading about 5-ALA fluorescent dye being given IV prior to surgery. While my father doesn’t actively need surgery right now, I am just preparing for the worst in the future. There was a study published out of Germany in The Lancet which claims that they can almost guarantee a greater degree of tumor removal. I have personally met with the surgeons at Duke/MD Anderson, and spoken on the phone numerous times with the surgeons of Cedars Sinai/UCLA/Sloan-Kettering/Moffitt/Northwestern/Columbia/Johns Hopkins and none of them seem to be experimenting with this form of surgery yet. Only in Pittsburgh have I even seen it tried in the US. I was wondering (1) if you have heard of it at all (2) if you believe it has any merit and (3) why these other major institutions haven’t joined in as additional arms to the clinical trial? Please help me shed some light on this if anyone has any additional information.

October 10, 2010 at 9:27 pm
(35) brian says:

Also, I try to meet as many survivors as I can at conferences and through blogs such as this, so if anyone would like to exchange contact information we can continue to give each other updates as to disease progression and new therapies being attempted, I would love to speak to/e-mail you.

October 25, 2010 at 1:06 pm
(36) brad says:

My 81 yo dad in pretty good health was diagnosed with a glio in July.

In retrospect our family would have never had agreed to radiation and the chemo – 2-3 weeks after he is left very very weak, can barely stand, and speech dwindled away to nothing by end of October. He is angry, frustrated always

Thanks god there is no pain, I just prey he passes soon and out of his misery.

December 16, 2010 at 5:17 pm
(37) John F says:

I had surgery to remove a grade IV GBM in January (2010), followed by radiation and chemo. I’m done with radiation and am still on a 1-week-on-chemo (Temodar), 3-weeks-off rotation. All MRIs since March have been clean and most have shown improvement (filling in of the empty space left by the tumor resection – it was the size of an orange; reduction in the pooling of blood in my brain). I experienced a lot of fatigue in the early months following surgery, but I was able to go back to work full time in July. I even managed to get a couple of games of softball in at the end of the spring season. My first at-bat was an in-the-park home run (but I was slower than before and barely made it to home before the ball got there). I think that was the only home run for me this year, but the timing couldn’t have been better…it gave me hope that I could get back to “normal” eventually.

For an uplifting blog by a five-year survivor of GBM, check out:

http://onkristasmind.blogspot.com/

Krista is a great writer and has chronicled her experiences better than I ever could and I find that I can relate a lot of my experiences to what she has written in her posts.

February 5, 2011 at 8:03 am
(38) Tanya says:

My mother was diagnosed with GBM and died within 3 months of diagnosis. She was diagnosed too late. Her GP was tretaing her for ‘memory problems’ and trying to refer her to the mental health team rather than looking for a physical cause for her presentation. We feel she was cheated of her life and it is very hard to accept. Such a cruel illness :-(

March 18, 2011 at 10:53 pm
(39) Judy says:

My 77 year old father was just diagnosed this week with glioblastoma….radiologist says go for treatment, hospitalist says enjoy what you’ve got left. My father is in better shape than most and is lucid and joking constantly….he is leaning towards no treatment. What and how soon do we see changes in behavior and physical abilities? We want to respect his wishes to not pursue treatment, so we want to be as prepared as possible…what is our next course of action? How do we make him comfortable and secure?

April 12, 2011 at 1:14 pm
(40) Amanda C. says:

My mother was diagnosed in Aug. 2007. I remember reading information online and preparing for the worst. It has been almost 4 years since her diagnosis and she is still battling this disease like the fighter that she is. Please don’t lose hope because their are people that have responded very well to treatment. She has had a few set backs but otherwise she’s doing pretty well. GOD bless you all.

May 5, 2011 at 10:19 pm
(41) Rosa says:

My father was 83 and diagnosed with inoperable Glioblastoma Multiforme in February 2011 he passed away on 27 March. To see a fit, healthy, strong, independant, private man become confined to bed and reliant on us to do everything for him within 1 week of diagnosis still leaves me speechless. On finding a mass in his brain a biospy followed to confirm the diagnosis. A bleed on the brain contributed to my dad not being able to walk. Radiotherapy followed in a hope to give him some extra time with us but he didnt make his last treatment. Within 2 weeks he become increasingly week and was sleeping all the time. Due to complications of the therapy my father died. Until they tell me they have a cure for this despicable disease I say “go home and live the rest of your life amongst your loved ones”. For every 1 positive story I have heard about surviving GMB there are thousands to dont. Hang in there everyone, show your love whilst life if good dont wait for illness to surface.

June 26, 2011 at 2:12 am
(42) Rose says:

I lost my 79 year old grandmother on my fathers side to GM-4 around six years ago. My mother stood by my fathers side and they both nursed her as best they could to her death. Now 3 weeks ago my poor mother at the age of 66 years old has been diagnosed with the same GM-4. I cant believe that life can be so cruel to deal this hand on our family not only once but twice. To make things worse my mother knows exactly what my nan went through in battling this disease. My mother had no idea that she had this tumor until l visited her at home to check on her whilst my father was away and found her in her sitting chair unable to move or speak and barely concious. She was rushed to hospital, diagnosed and had emergency surgery to remove 90% of the tumor and relieve pressure on her brain. We have given her a very slim chance to fight this but l cant help but feel as though it would have been better for her to have died on the surgery table, even as guilty as that thought makes me feel.

July 31, 2011 at 8:06 pm
(43) Unidentified says:

I need some kind of information, My mother-in-law is almost 40 she was diagnosed with GBM in June of 2008. My husband and I have had to stay with her a lot here lately because she fell. We have been totally in the dark about everything, i literally just found out what type of cancer she has. I was wondering if anyone knew any odds to give me on lifespan. Her tumor was he size of a grapefruit and she had lost totally control of her body including bladder when she found out she had cancer.They removed all of the tumor but my husband said that some of it couldn’t be removed. She takes temador (sp) 5 days a week once a month. Here lately she seems to have gotten worse on memory and she’s just totally out of character.Anybody have anything, my husband leaves for boot camp in Sept. and is terrified his mother is gonna pass while he’s gone.

September 7, 2011 at 3:09 pm
(44) Andy says:

My father was 89 when diaganosed with GBM July 18,2011. He was not able to mumble more than a couple of words at that time. Doctors offered surgery and radiation for the tumor (size of baseball) but he wanted to go home and spend his last days on the farm. There was no guarantee that any sort of treatment would benefit him more than a few months. It wasn’t good enough for him and the family feels it was the right choice. It is hard to watch the disease progress but we are trying to keep him comfortable. Hospice has been called in and they give him 1-2 weeks.

October 4, 2011 at 9:18 am
(45) Barb says:

These stories sound all to familiar. My mother was diagnosed May 2. They did just a biopsy only due to the fact her symptoms were very minimal with just her speech being a little “off”. (no one noticed but me but I am an RN and picked up on it). So when the diagosis came back I was sick because I knew the prognosis. She was 78 but you would have never known it. She was active, going to the gym 3-4x week, didn’t even have arthritis. She was treated w/decadron, temodar and radiation but only managed to make it half way through because it debilitated her so quickly it was not worth it. She died only 10wks later. The doctors were a little surprised at how bad the treatment was for her since she was so healthy. There is a part of me that is thankful she had such a healthy life and no pain even with all the treatments, but yet a part of me is so angry because she did not deserve this awful disease. I feel for all of you because it is such a hard road. The time that should be spent enjoying the time you have seems to be taken up with doctor appts, treatments, trying to figure out what to do, in the meantime your loved one is going down so fast, there is little time to enjoy the life you have. Good luck to all.

February 16, 2012 at 8:20 am
(46) Tash says:

My mum died 2 weeks ago from GBM. She died almost to the day, three months from her diagnosis. She was also extremely active, working fulltime and a devoted grandmother, aged 73. She managed ok for 8 weeks, then started having bad focal seizures (up to every half hour) a month before she died. The doctors could not control them. Within 2 weeks she was barely able to walk. In the last 14 days she stopped eating, taking her medication, developed aspiration pneumonia and was in a coma for the final 6 days. I couldnt beleive how quickly the disease set in. If Id have known what has happening, I would have never left her in hospital so long, waiting for doctors to try and figure out what was happening to her. Nobody deserves this terrible illness. I cared for her at home, which I loved, until she was taken to palliative care in the last week. I sat at her bedside for 6 days, as she fought to stay. She died in my arms. She was my only relative and Im her only child.

March 22, 2012 at 7:35 pm
(47) Tink says:

Hi everyone, GMB is a terrible and shocking disease, it hits families hard and is so unexpected, you go from knowing nothing about it, to knowing as much as you get. My mum is in her second year after being diagnosed with a grade 4 GMB, it was like a butterfly on her right frontal lobe, she’s had surgery, they removed 98%, then radio and temadol, she found out early Feb that it has come back, but is now small tumours on different parts of her brain, she’s now back on temadol and will be having an MRI in April, although she is really tired at times and can be a bit confused, her positivity is amazing, she totally believes she is going to be ok, I think that her outlook and support from her family and friends has been part of her recovery and survival, I am thinking of each and everyone of you here, don’t give up xx

June 28, 2012 at 2:43 am
(48) joseph deepak says:

My Mother is 56 and was been diagnosed with GBM on Jan 2012 and operated on march 2012.she never had any chemo or radio and now june2012 she had a MRI and it is seen that her occipital region has patches of white matter and she is having a weak right side with pain in her shoulder. Can you all please guide me what steps do I take for comfortable rest of days.

July 1, 2012 at 12:46 am
(49) Mary Anne says:

I am reading all your comments while I am sitting watching my father die from GBM Grade IV. It all sounds too familiar and I feel everybody’s pain. My dad was diagnosed in early April at 86 years of age. He was very healthy and independent up to that point. The doctors said to be aggressive, have surgery, radiation, Temodor, etc. That was about 10 weeks ago. He did everything up to the last radiation treatment. He was miserable, and it ruined him. The day after he stopped radiation, he started dying. I wish we had done nothing, but you just don’t know. I know it is a rare form of cancer, but it is so tragic. I am biased because of my experience with GBM, but funds must be channeled to this research. I’m just glad it is almost over for my father.

September 12, 2012 at 11:06 pm
(50) Brooke says:

I want to give some of you some hope.. My Mother was diagnosed with a stage 3 GBM in 1994, she was only 37 years old and given 6 months to live (after surgerys, chemo and radiation) This amazing woman is still alive today, has never been in remission, yet she is still fighting – she has a few bad turns and has a mind more like a child, but she is still here with us!! Please believe in the will to live :)

December 20, 2012 at 9:52 pm
(51) karin says:

My father who is 81 was diagnosed with a GBM in October. Lucky for us I have a brother that is a radiologist in the family that found the tumor and had it promptly resucted. He is in the midst of radiation and id doing ok besides a few side affects from the steroids and tx. I am not sure how long he has to live. I hardly see him anymore asince he moved in with my brother. I used to see hime 3 times a week at least. That makes me sad. I miss my dad sick or not. I want him around me til the end. I pray for the best.

January 14, 2013 at 3:33 pm
(52) barbara says:

My husband had 80%of this tumor removed this past August. He is now receiving an avastin drip every two weeks and the tumors a shrinking. the original radiation and temedor did nothing. His side effects are fatigue and this is frustrating for him.I say if that’s the worst then naps work !! Hoping for a trip out west in a month or so.

January 14, 2013 at 3:38 pm
(53) barbara says:

My husband had 80% of his tumor removed. He is now receiving Avastin treatments every 2weeks and his tumors are shrinking. The radiation and temador for 6weeks did nothing.He has alot of fatigue so he naps…

January 21, 2013 at 5:18 am
(54) Wendy says:

Hi my father was diagnosed with GBM last year in September n he had the surgery then he had a round of radiation and kemo tablets now his having his 2nd round of kemo tablets but all he seems to do is sleep n he seems fine then later though the day he gets confused n seems to talk but other stuff that I don’t understand is this normal please ….

January 30, 2013 at 1:39 pm
(55) Matt says:

I am a 24 year old college student who just dealt with the death of my father last week. He was in his 50′s and one of the healthiest people I have ever known.

After two months of aggressive treatment the tumors showed progression and new symptoms arose. He started limping a little on his right side one day and within two weeks he was nearly paralyzed and confined to a walker/wheelchair. The dexamethasone combined with the tumor made him extremely angry and childish – he would constantly demand we go bring him food or whatever he wanted “right now.” He was constantly overwhelmed and irritated. His speech was so slurred he could barely be understood.

Almost all of the pain he experienced in the end was in his legs due to Avastin side effects.

One day he couldn’t get up anymore, not even with assistance. Within two days he had fallen into unconsciousness. My sister and I lay next to him for several days and talked with him all we could – we think he probably could hear some of what we said. It was so hard knowing he wasn’t getting any food or water, just medications that hospice provided. He stayed in his bed at home till the end.

The “death rattle” awoke us early on Monday morning, and soon he was foaming at the mouth. My sister was nearly hysterical, so I put an atropine patch hospice gave us behind his ear, and fortunately the foaming and blueness in his extremities went away.

He died around 2:30am on Tuesday, – the day I was supposed to start school – while my sister, mom and I were asleep. I had just given him his medications at 1:30am and then fell back asleep. A huge gust of wind awoke as at 4am and quickly we realized he had been dead for at least a few hours as his limbs had gone hard.

My father’s first obvious symptoms arose in late-July, he was diagnosed in early August, and by mid-November he required 24 hour-a-day care. He died January 22nd.

April 4, 2013 at 7:43 am
(56) Richard says:

my brother had a gran mal siezure and was diagnosed, went for debulking surgery and the cancer was benign still, two years later its covered his left lobe and pressing on his brain stem and optic nerve, he is blind and has slipped in and out of two coma’s. now a sharp decline started yesterday and i think we have a few days or weeks.

May 7, 2013 at 12:21 pm
(57) Vicki says:

Hi everyone – I was dignosed on 1 June 2011 aged 43 with stage 4 GBM, (although it was not fully confirmed till after the brain surgery results came in on 15 June, but he surgeon told me he had seen enough of it to know it was GBM and well advanced). I had no symptoms that they talk about like headaches until I had a sezuire that was my first sign. I had surgery but they couldnt remove it all, anyhow long winded I had radiotherapthy and chemo and I’ve lived well past what was expected. We were told to prepare for 12-14 max but its almost been 2 years. Its been rough, I’m not who I was after 2 strokes and I often feel sad for my family that I keep ticking on for so long. The way I see it we are all dying from the time we are born so each day when I wake up I see it as a bonus. In lots of ways its been a blessing for me I have the most amazing husband, family (also have some useless ones in there) and friends and I’ve learnt to take it one day at a time. I am ready to go when its my turn. My love goes out to all of you who have lost someone the price we pay for loving is the grief we feel when they are gone – BUT its all worth it to have that love. Vicki (davidandvickiwalsh@xtra.co.nz)

July 9, 2013 at 2:49 pm
(58) Nancy says:

My niece, 21, was diagnosed June 4, 2012 – She did all the chemo, radiation, trial vaccine and avastin – Nothing worked for her – She was a young bright happy young woman – Sadly she died June 26th, 2013 and our hearts are broken – I find it unthinkable that the treatments for this disease are basically the same as 30 years ago – This is a lethal form of cancer and the chance of survival is not good at all so why is there not more research being done to find out how you get this cancer and ways to treat it so you can at least have a chance at survival – I pray that happens for all patients that are dealt this hand!!

July 16, 2013 at 12:07 am
(59) jess says:

My father is in his mid 60′s. A month ago, he began to feel “not well”..nothing specific..thought he had a nasty flu..Within two weeks, he was sleeping all the time and had speech problems..this from a man who was a lawyer, a poet, and in better shape than most 20 year olds. His wife took him in to get tests(I thought a minor stroke). He was given a Ct scan, then an MRI, then a biopsy..our worst fears were realized one week ago today with a diagnosis of a butterfly glioma that is un operable. Treatment options are being discussed as we speak. Unfortunately, my father moved to the UK 3 years ago..I live in the USA. My only lines of communication with him are by phone or internet. He rarely gets online and refuses to speak to either my brother or I..this is so out of the ordinary behavior for my dad. We spoke on the phone every week and were more like best friends. I’m trying to stay optimistic and patient but reading these posts makes me even more terrified I will never speak to my father again…Reading all your stories breaks my heart. I hope and pray research is aggressively done to improve the lives of those with this diagnosis.

July 26, 2013 at 8:14 pm
(60) G Junior says:

I agree with all of you about how devastating this disease is. But I’m offering a glimmer of hope to all of you. We found out by total accident that my wife had a glioma in her frontal lobe. We sought out the best surgeon in our community and he removed a tumor the size of a grapefruit. Since then, they’ve removed another “grapefruit” and lastly an orange all about four years apart (three surgeries). Had we only listened to our first doctor, my wife would have been dead 8 years ago. We sought out a second opinion at the Duke Brain Tumor Center in Durham, NC. They’ve offered compassionate and personalized care to my wife. We were initially told that she wouldn’t live beyond 3-5 years. It’s now been in excess of 12 years. We’ve had our struggles, I can’t tell you how many MRI’s, rounds of chemo we’ve been through and now most recently the radiation treatments. I guess what I’d like to share the most is: we don’t know anything about this monster or how we got it BUT take responsibility for your care. Ask questions, seek additional opinions and don’t just give up. I’m not selling anything nor am I promising anything but I am certain had we settled on the “standard” treatment, my wife would be one of those statistics. I believe that everyday we’re one day closer to a cure. I have to, that’s all we have.

September 4, 2013 at 1:29 am
(61) Liz Webster says:

My brother had seizure 20 August 2012 we lost him 35 (5weeks to the day) days later. He was told if he did nothing he had 6mths if he did radio & chemo he could possibly have 5 yrs he did chemo & ray 3 days before he died they said 3 months. They don’t know much. I sometimes wish he didn’t fight so hard maybe he wouldn’t have been paralysed and maybe had some quality of life but that was his style he would have never given up. Good luck to everyone out there really hope your experience is better one day there will be better outcomes

September 7, 2013 at 11:12 pm
(62) Kelly says:

Hi,
My mother in law was diagnosed with a Glioblastoma grade 4 in February. She is 62. She has surgery to remove most of it but they could not get it all(left side)
She went thought her 6 weeks of chemo and radiation. She is also getting and injection every 2 weeks and takes the chemo pill once a month for 5 days. Although her scans show minor improvement she as a patient is declining. Can barley walk on her own, trouble sleeping, very weak and a lot of trouble communicating and understanding. It’s been very tough, she pretty much needs 24 hr care. She was doing very well right after her 6weeks of initial treatment, and again tumor is not any larger, infant slightly smaller. . The dr’s are stumped why the patient is not matching up with her good scan results. Has anyone encountered this before?

October 8, 2013 at 1:02 am
(63) sandra says:

my husband just died of glioblastoma not only does it kill you but what it does to a person before you die is like a nightmare He went from 210 lbs to 130 lbs in 7 months dehydrated and immaciated .

October 8, 2013 at 1:15 am
(64) Mark says:

I’m at 10 months from diagnosis of gbm iv. I had 98% surgery, radiation& still on chemo with minimal side effects. I’m riding my bike, working, and driving, pretty much back to my old pre-diagnosis self, just more tired.

November 2, 2013 at 8:13 am
(65) Audrey Morris says:

My husband was diagnosed with Gliblastoma Multiforme Stage IV August 2010 at age 73. Had surgery and radiation at the Cleveland Clinic. He was given 14-17 months. In June 2013 he was diagnosed with another small one… First one he was treated with temodar and radiation. Surgery is out of question this time and doing second chemo now.. However it is affecting his heart and lungs. We are Thankful that he was well for 3 years. he wasn’t running around any blocks with energy but he was still part of our lives.

January 21, 2014 at 10:21 pm
(66) patty says:

I’m sitting here reading all the blogs with tears rolling down my cheeks. My husband 52 yrs old was diagnosed in jan 2013 after a grand mal seizure. hes been thru 2 surgeries, chemo and radiation. He’s currently on his 2nd round of chemo, looking at him breaks my heart, his smile is gone, his hands shaking, he gets very angry for little things, he lies, he makes poor decisions and sometimes have a scary look on his face. I’m so scared for my 11 yr old son who cries quiet often because he’s so worried about his dad, his grades are dropping, im just so terrified i cant sleep, i can’t eat, my heart palpitates. Just so confused i dont know what to expect i ask the Dr’s at Sloan Memorial Hospital questions but they themselves seems puzzled at times. Does anyone knows what to expect when the time is closer???I just ask God to give me the strength to fight this battle it si a terrible battle to fight its now 1Yr and we are still fighting. Best Wishes to all and please lets fight it together

February 10, 2014 at 12:20 am
(67) G Junior says:

Hang in there Patty. I know the pain you are feeling. During the episodes of forgotten memory and bad decisions, it is extremely difficult to remember our loved one isn’t at fault; they are dealing with an altered brain. Some of the filters we all enjoy are missing. It’s during those difficult times I have to reach way down deep…I pray a lot. Prayers to you and your family…you are not alone.

February 13, 2014 at 5:30 pm
(68) Sue says:

My step-mum was a litle forgetful over the Xmas period and disinterested (she normally loved Xmas) aswell as far more tired than usual but we thought she may have been depressed. She had a seizure on 2nd Jan, taken to hospital and diagnosed with inoperable GBM. Was told she would have radiation therapy and that she was strong. She was sent home straight after diagnosis and we were told a care team would be sent (NHS) to the house which never happened as it was decided that there wasn’t enough funding. From the moment that she got home, things went down hill very fast. She didn’t really communicate, I’m not sure she had any idea what was going on, she had no strength at all, couldn’t even get off of the toilet or clean herself etc. When my Dad rang the care team for advice, they told him that he had to motivate her to do things, i.e. hoovering etc, which was an absolute joke in the state she was in. She got no help at all and we received no advice or even any explanation of her condition and within 12 days of being home, she died of a brain hemorrhage. I am still very angry at the lack of care that she was given not to mention the shock of losing someone that was perfectly healthy (or so it seemed) in less than a month. This is a cruel disease.

February 16, 2014 at 12:52 am
(69) Phil says:

My mother in law was just diagnosed Feb 15. I have no idea what to expect. They are not operating. That tells me its not good. I read the stories of people lasting a few years or less but all have had surgery. I have 3 children under the age of 5 who love there Gramma and a wife loves her mom dearly. I am speechless. Any kind words would be appreciated.

March 10, 2014 at 10:13 pm
(70) linda says:

my husband was diagnosed with gbm in August 2013. the doctors were giving him a high dose of methatrexate every 2 weeks for 4 months. They did surgery first and removed a tumor the size of a mans fist. Anyway, after the 4 months they went fron every 2 weeks to once a month. in Jan. 2014 the mri showed the tumor was growing back. We are now on a every two week regiment and also taking the methatrexate. The doctors have added tremadar, and rotuxin also. We had another mri this week and it showed shrinkage with this treatment. However, the treatment is very hard on my husband. He is very weak and tired. Also his temper is starting to show. He knows it is a side effect of the chemo so he tries very hard to control it. I am still working and I go to the hospital with him every other week. The treatment takes 4 days. Is anyone else going through a similar treatment? Thank you.

March 25, 2014 at 7:33 pm
(71) bill glover says:

was diagnosed with gbm march 14, 2014.
am now taking my 4th week of chemo/radiation at Emory, atlanta, Ga

April 4, 2014 at 5:03 am
(72) Jc ash says:

My mother 77 diagnosed with glioblastoma multiforme. She had surgery to remove the tumor. She spent 2 weeks trying to get back to normal. The doctors insist that radiation therapy and chemo pill is her best option. I don’t agree. I think she should spend the time she has feeling good, not spending 5 days a week at a hospital. But she insists on the treatment because she believes in miracles. Shame on the doctors for giving people false hope for money

May 1, 2014 at 11:18 pm
(73) Eileen says:

My husband age 53 was diagnosed w/ grade 4 glioblastoma January 7th. He had surgery on the 14th to remove the tumor. We started radiation then chemo. Other than no filter, mood changes and a little depression, his MRI has come back normal. It has been 4 months and he is on monthly chemo as preventative. Looking forward to our daughter’s wedding snd seeing family in August.

May 10, 2014 at 10:28 pm
(74) Laura says:

My dad was diagnosed with glio in 2012. He had the surgery, rediation and chemo. He has to go for an mri every two months. This past April we found out the tumor has returned my dad is 86. What happens now he also has a pacemaker? Will our doctor want to put him through another surgery and will he survive. Right now my dad can walk using a walker and can feed himself everything else is done by the caregivers. This is the worst thing in the world to happen to him. Dad says he wishes this will be over soon. I thank God for his life everyday he is with us. Once we talk to our doctor I will let you know what options we were given

May 19, 2014 at 9:03 pm
(75) Cindy says:

I have gbm. I was diagnosed in January 2012. I first did the temidR and there were infusions. The chemo left me weak and sick. I lost 90 lbs in just over a year from lack of appetite. My life changed when I switched oncologists. My new oncologist encouraged and supported my decision. I felt my previous dr just wanted me to give up. I could not do that and leave my husband to care for all or children ranging from elementary to college.i was able to be part of a trial using Avastan. It changed everything. I am now cancer clear. I do maintenance every 3 weeks to keep the cancer from growing and screenings every 3 months .so far there has been no new growth and the original is so small it it is not visible.we can only see the opening where it was. I believe in prayer and I had people all across the country praying. I am a two and half year Gbm cancer survivor which my dr tells me is a rarely. I tell everyone iam proof there is a God and he gives us miracles if we only believe

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