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Glioblastoma Multiforme Stage 4 Brain Cancer!

We'd never even heard of it before March 15,2010, when our doctor told us that my husband had it. We were in shock! He'd never before been sick, was very athletic person.
He turned 58 in Feb. 2010.
Diagnosis - March 15, 2010, Surgery to remove 95% of tumor in right temporal lobe behind his right eye on March 23,2010. 6 1/2 weeks of  radiaiton and Temodar, Arpil and May 2010. Gammaknife on June 30,2010, Gammaknife on Nov. 3,2010.
We live from MRI to MRI.
He is now Permanently Disabled, can no longer do his job, which was a FireArms Instructor. Now when the weather cooperates and he's feeling up to it, he golfs and walks daily. Doctors told him to stay as active as he can.
This has been very hard on his 3 daughters, 3 son in'laws and 7 grandkids. Me too! He's the ROCK of our family! it's very hard seeing him this way and not being able to do anything about it.

My husband passed away on Dec. 10, 2011, he is greatly missed!
Grandmomof7 Grandmomof7 56-60, F 18 Responses Jan 12, 2011

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So sorry for your loss and all of the other loved ones on this sight.
My uncle, I'm his POA, was diagnosed June 1, 2012. 90% was removed but he has no short term memory and vision on right side is poor. Had been an avid reader but cannot now. Had his own florist shop but doesn't talk about it or ask about it. Doesn't really engage in conversations anymore but says we'll see what's next. When diagnosed, he didn't always remember but occasionally said he had lived a good life. Then dr's talked him into treatment...did 15 our of 30 days of radiation and chemo but he got worse.
Terribly restless and is in a nursing home and had been on ativan as needed then ceraquil but that made the human jumping bean. Doesn't know his legs are weak and tries to get up and walk...has fallen 6-7 times w/out major injury. Nursing home wants us to hire sitter...nursing home being paid out of pocket over $7000 per month. Hospice is on board but meds are making him worse so was sent to hospice center in local hospital to get it right. Now on phenobarbital and morphine and the best I've seen him since late June but still lots of confusion but more engaging. Nothing about this man has been by the book but wondering what will happen next.

Hi. My mom was diagnosed with stage 4 glioblastoma March 24, 2011 also when they did the first surgery to remove what they could of the tumor which was located in Part of the Temporal lobe and most of the Occipital lobe. She did 6 wks of radiation and temador. They then gave her a break and did another MRI. She turned 50 May 1, 2011. She went back in the hospital June 12, 2011 for a second surgery to remove some scar tissue. Then she started temador each month, only taking it for one week of the month. They also had her on dexamethazone everyday twice a day for swelling. They also had her on medication for seizures. She sometimes has headaches so bad that she has to get admitted into the hospital. She started on avastin treatments(not sure the exact date). That replaced her avastin. She did that treatment once every 3 wks. Then she needed dental work done so they stopped her avastin because it thins her blood. She had her dental work scheduled but had to be pushed back a month for paper work. So she was off her avastin and her dexamethazone for 2 months. She recently was put in the hospital for a small seizure. She didn't remember me for an hour. And she thought she was somewhere else. Now she is out and doing a little better but she is confused as to where she is. She knows she is in her bed but thinks she is in a different city. I have read all the symptoms of this type of cancer but nothing says like what to expect next. I am 32 and she has a 22 year old son and a boyfriend of 30 years. I have a 14 year old daughter. I quite my job of 6yrs to take care of her. After it knew she was in the clear(for the most part) I moved because of things I choose to keep personal. She lives with her boyfriend and her sister lives a mile down the street from her. I just want to know what to except next and have a group that I can talk to because no one I know has gone through this kinda thing before. My mom is my best friend and I don't show her how much it hurts me. <br />
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Can someone just talk with me and tell me what I should expect?? Thanks

Hi there, just wanted to know if your mum is ok? I lost my dad to GBM4, its such a heartbreaking journey😔

Hello all, My 51 year old sister was diagnosed with GBM in February 2012.Had 99% removed.Went through radiation Temadar. She has a visial defect on the right side and she cant read anymore.She started a five day cycle of Temadar at a larger dose and she was sick and sleeping alote. We couldn't get enough fluids into her and she ended up hospitalised for dehydraton.10 days later now and shes in rehab trying to get her strength.She is saying now that she will not take anymore Temadar. I agree with her and we are trying alternatives like Tong Ren therapy and acupuncture.Just want her to feel well for the time she has left.I want to thank Montyatk for his post. It was beautiful and made me cry. Everthing that I have read here has helped me.Thank you Thank

I just wanted to add that Facebook has a wonderful support group for glioblastoma patients.... just put in the search bar on FB: glioblastoma support group It is a private group, so you will have to ask to be added. Wonderful, helpful information from people who are battling the disease and also their caregivers.... God bless all of you..

I belong to several groups on FB. Helps to know that others are going through this too!

I am in the group for Glioblastoma are there any others on fb?

THANK YOU! I am a 42 year old mother of 4, diagnosed October 27, 2011. 100% resection of the primary tumor in my frontal lobe, and Temodar and radiation. ALL on this page know how vicious this thing is, and I have developed an allergy to the Temodar, and the last of the group I joined in November is gone. I really needed to find you guys, prayers for healing both spiritual and physical for you all and my family. I don't know what to say to my mom, she is so sad, I am her baby.

I am a nurse, so I am thinking maybe God wanted me out of the ER and into Oncology, so I am trying to find all that I can offer as a patient and a nurse to others as we walk this path. Good days and bad days are still days.

I lost my husband last week to glioblastoma stage 4 he fought so hard right to the end

I'm sorry for your loss, mine fought to the very end also!

How long did your husband fight?

21 very hard months.

grandmomof7 my husband had dr. friedman from duke also.... he only lived 5 months from diagnosis.... no real quality of life.... I miss him so much....

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Hi, my mother had this and was operated to remove as much as possible. She passed away 9 months after been first diagnosed. It is a very difficult situation and a roller coaster of emotions. <br />
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My uncle (mothers brother) has now just been diagnosed with the same thing. Extremely difficult. The doctors are saying it is inoperable and he is now in a hospice and going down hill rapidly.

Oh no! So sorry to hear about your uncle. I'm told it can run in families.
Worried about my 3 daughters getting GBM-4 like their Dad.

My beautiful , 68 year old mother was diagnosed with stage 4 GBM in her corpus collasum on Feb 27, 2010. We were told there was nothing they could do. They did the biopsy which caused a cerebral bleed and she was in a coma for 7 weeks. That took care of any options of getting a second opinion. They did do a short round of chemo. and another drug to help with the swelling. She came to my house for hospice and lived another 7 weeks. She did come out of her coma for a few weeks so I could talk to her. My mother had no short term memory and never knew she was dying or sick. It may have been a blessing, but I'm not sure. She died 3 months from the diagnosis in June of 2010. I'm still devastated and in shock. She never had a symptom and was just living her normal life while being in the end stages of brain cancer. I guess the tumor didn't press on any areas until she had a seizure and we took her to the hospital. My mother's mom also died of a GBM 17 years ago. My grandmother also lived 3 months after the diagnosis. I've been told it's bad luck, but I'm nervous for myself and my family. I don't understand why they both died so quickly. I pray for all of your loved ones and I pray for you as caregivers. That truly is the hardest job you will ever do.

I'm sorry you lost both your Mom and Grandma to GBM-4. It's an awful disease.

My father was complaining of horrible headaches in May. His vission was a bit blurry and he said he felt pressure in his sinuses. The doctors told him it was probably nothing to worry about and they did not wanted to do an MRI on him because they felt it was more harm to expose him to the radiation. The day after his 49th birthday (may 28,11) his wife took him to the ER with a splitting headache and they ran the MRI. The results came back positive for a large tumor on Brocca's area. That explains why he was also having dificulty with speach. Couple of days later he had surgery to remove the tumor. They were able to remove 98% of it. We were all very happy because it seemed that everything was going to be fine after he was done with the radiation and chemo. The results of the pathology came back positive for GBM 4. I didnt really know what this ment. I feel now I could have done a little more research or call more places looking for treatment. After the surgery my dad had trouble communicating and a little trouble with short term memory, everything else was perfectly fine. Last year my father was diagnosed with an incurable type of leukemia (Hairry Cell) but he went through treatment beautifly and the cancer was under remission! So we all had a hope that this was going to be the case again. While he was going through radiation another tumor developed in his frontal lobe. The doctors said there was nothing they could do with this one. The Drs did research and so did we but he was not a candidate for any treatment. He was sent home to enjoy his last weeks with his family. We all flew in to be with him ( His mother, 2 daughters, and 2 grandsons). He passed the way 10 days later. My dad lost the ability to walk on his own (even when he tried his hardest) He went to sleep one day and never woke up. If its any help to onyone out there, in the university of Duke in NC there is this vaccine for GBM it sounds very promissing. My dad could nt have it because his other tumor was in a diferent place. And to the people that are going through this, please dont get discuraged. Keep fighting, dont get depressed because you have lost your ability to walk or talk. You are still here KEEP FIGHTING for yourself and your loved ones, My father wanted to live and see his kids and grandkids grow. He would have been happy with only 5 years more. He didnt care if he couldnt talk or walk he just wanted to be around so please I know its a dificult thing but try to enjoy your loved ones.

We got bad news, my husband's tumors are not responding to Gammaknife, Temodar and Avastin Infusions.
Dr, Friedman at Duke has been contacted for consult on new treatments. So far it's not looking good.

Im sorry. You and your family are in my prayers. I am reading this book it might be helpful FINAL GIFTS. I'm really hoping for the best.

Thank you, he lost the battle in Dec. 2011, missing him more each day.

My husband was diagnosed with glioblastoma in May, went through Chemo & radiation we reunited almost 4 yrs ago (we dated in H.S) got married 4/26 had a pet scan yesterday and was told today the tumor had grown, trying to get rid of blood clots in his leg and lung and will probably be on Avastin, I don't know how much longer I can keep it together has been in and out of hospitals since 4/28.

My dad found out last year in April that he had a GBM stage 4. He had never been sick in his life. They did surgery on May 7th to remove all the new growth. He came through surgery great. Doctors couldn't believe how well he was doing. He went through 6 weeks of radiation and temador. Swelling started right after the radiation was through. He couldn't hardly walk, so they started him on Avastin. We could see the difference right away. They also started him on Temador everyday. Several months back he started using a cane to help him keep his balance. About three weeks later they said that the temador wasnt' working anymore so they tried CNNU. It didn't work so he is just on Avastin He moved from a cane to a walker about 3 weeks ago and last week he started to not be able to walk without someone being there with him to make sure he doesn;t fall. He has fallen so much and that worries us because they have told us that falling and Avastin don't go together. His short term memory is a problem. Lately we no longer get used to one thing till something else starts up. Don't know what is ahead but I do know that the Lord is in control.

We live by my motto: Life Goes On . . . One day at a Time!"

It's a tough journey we all are on and it affects all of us.

my father was just diagnosed this last week with a brain tumor he did have surgery and they got most of the tumor there is still some left it is wrapped around a major artery so they are going to do chemo and radiation aslo it happened so fast but he seems to be in good spirits he is only going to be 57 on july 16th with 11 grandkids and 5 children of his own any helpfull info would be greatly appreciated cause this is all new to us. thank you

I really wish I could help you. My husband is having memory problems, but doctors are very proud that he still walks every day and plays golf when he feels up to it.<br />
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There are many trials out there, but none that my husband can do. The infusions of Avastin seem to be doing a good job at this point.

Hello to you all - I am a mother of 3 young boys. Back in November of 2010 my youngest son Zachary who at that time was of the age of 16 was diagnosed with stage IV Glioblastoma. My husband and I as you can imagine were quite taken back by the news. Zachary's fight for life started! The doctors told us that he only had 8 months to live. He underwent chemo and radiation thereapies immediately. He was on chemo 5 days a week for 42 days and had radiation 5 days a week for the same duration. We were told from the start of these therapies that they would not cure our son but only stabalize the aggressive growth of the cancer. Zachary's tumor is on the left side of his brain and has extenssive edema as well that has crossed the midline section. Because of the location of the tumor my son has lost the use of his right extrremities. Writting, walking are near impossible. The doctor told us that because of the extent of damage he would never walk again. He gets physical therapy and ocupational therapy three days a week. He is showing signs of being stronger and the therapists hope that with much patience and endurance he might be able to walk again with the use of an assisted device. This was good news for us as we were told differently at the start. The tumor rests deep in his brain on the motor sensory and is not a canidate for removal by surgery. My husband did an incredible amount of research on the disease to see if we could find another answer to saving our son's life. After months of searching he final found a break thru. He found a phase I trial located in Minneapolis, MN under the direction of Dr Christoper Moertel. It is a vaccine trial that is designed to use your own cells to fight the cancer. We are currently in the begining stage of this trial but are already seeing good results. I thank God everyday for an answer of hope. Zachary has been nothing but an inspiration to all those around him including the doctors he has seen. He never complains or blames anyone for his most devestating time in life. I know though that deep inside he is hurting - not being able to have normal teenage life!! I do give hope to those who are dealing with GBM - there is becoming more of an awareness to fight this evil disease. <br />
I am wondering though if there is anyone else out there that has had the same affects from this brain cancer as regards to walking. My son desperately wants his independence back. Can you give us any positive feedback? <br />
Sincerely <br />
A broken desperate Mom

My mother has GBM and has a lot of the same walking issues as your boy does. Her brain tumor is on her right frontal lobe so she is not paraliyzed on the entire left side of her body. She is going threw a experimental sugery and the cnacer is still dying. Her cancer has also crossed over the midline of her brain which has cause a lot of speech problems. Hope your son doesnt give up and keeps on fighting this horrible cancer

i ment now paraliyzed....sorry about that

Hi. I am 47 years old and I have a GBM. I was diagnosed with an oligodendroglioma about 5 years ago. So I don't know if that counts as the time from which I have a GBM or what. (Any idea?). <br />
It is pretty yucky having this tumor. I have had 3 brain surgeries, two 6 month course of Temodal, and am now on maintenance Temodal (daily dose for as long as it works. cross your fingers). I have had great care on the medical end of things. I am a health professional with a PhD and have done all the research on this tumor, so I have a pretty good idea about what "best care" should be, and I figure I have pretty much had it. <br />
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Besides the usual trauma to the individual and families that this tumor causes, I guess I am wondering if there is anyone else out there who might be thinking that the "all treatment at any cost" approach is not the right one with a GBM? The statistics are pretty bad. The side effects of treatment are pretty bad. The liklihood that the treatment will work is pretty slim. <br />
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I have been thinking about the "lived experience" of GBM- it is amazing that most of the 'stories' about this diagnosis come from the family members who are caring for the person with the tumor. It does make sense given what the losses are/ are going to be. And they definitely have a very tough row to hoe. <br />
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So, as the 'patient', I am trying to develop my living will: to balance out what is right for me, with what might be right for my family and friends. I don't want to cause unnecessary pain, beyond what would be 'normal' for the death of a mother (2 sons in their early teens), wife, sister, friend etc. I would want the 'me' with this tumor be the same as the 'me' without it. <br />
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One of the other tasks before me is to figure out what might be right for developing a 'dying plan'; much like you may have developed a 'birth plan' to go through that very important life event. <br />
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any experiences, ideas or suggestions are most welcome.

I admire your courage and your devotion to your family. Sadly, I am the mother of a daughter that had an inoperable GBM. We lost Emmy in July 2007, she was 22 years old. She got sick in November 2006. She had been such a healthy person, a vegetarian, a runner, she worked and volunteered, she was in her third year of art school, she was a new bride. Our goal was to keep her comfortable and create a calm loving environment for her. She had Gammaknife in early Feb.2007. but, the tumor went wild in the spring and there was nothing to do. She had an excellent doctor, world reknowned. He assured us that he would fly her anywhere in the world if there was something that could be done. There was nothing.
I have been a caregiver for 30 years, so, I was able to do all of her primary care myself. She simply went to sleep. There was nothing dramatic, she just slept. if there is anything further that I can say that you would find helpful, please message me. Bless You and Yours

My husband has been on Avastin since Feb. and this last week's MRI showed to Avastin is working better than they had expected. He will continue on Avastin for 2 more months and have another MRI.<br />
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My husband was a firearms instructor here at Hanford Nuclear site here in WA State. He can no longer work and has been very hard on him also, he does go visit his work once in awhile and they always invite him if there's anything going on special.<br />
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Prayers are working for us and we've been very blessed by alot of people praying for him. He just turned 59.

My brother was diagnosed in October 2010. Had tumor removed. Had had severe seizures since. Was put on medication for that. Has put on extreme amount of weight due to the steroids. Was very active in the construction industry. Is now really depressed due to the fact that he cannot be as active. He gets tired easily and is having memory loss. His wife is the active caregiver as he lives far away from the rest of his family. We call him always to check on his progress. This been especially hard on my mother, as she is 80 and he is the youngest of 9 kids. We pray each day for him and pray for a miracle.

Hi I was diagnosed with GBM in May 2009 and they subsequently removed my right frontal Lobe I lost all short term memory and was having bad Viet Naam flashbacks for a while. I was given 12 months due to the extent of my tumor. I had pretty much the same treatment as Your Husband and when the GBM came back right on schedule in May I also had the gamma knife as it was now in an inoperable location. Then they added Avastin to my treatment I now get Avastin biweekly and Temodar every other Avastin Week. I passed my Last MRI 1st week of Jan. I wish I was lucky enough to have a wife whom loved me so I didn't feel so alone a times. Fortunately I have Three great Children two who have given me the insperation I have needed at times. I hope your Husband is doing well, I figure there is a reason we have been given this extra time. I know I have never felt so blessed for this. I may not be normal (what ever that is?) but now I have a great excuse whenever I need it. :) I can only tell U and any one else in Your situation that is the Out pouring of Love from my Friends and Family that makes my life, even in my reduced mental capacity worthwhile. I hope the best for all of U!!!! When I do get to Heaven? Hopefully:) I am planning on putting in a good word for all GBM Patients but Also 4 All of the Awesome Caretakers (Family,Friends,Hospital workers) whom give their Love and Hearts to the care of us Patients. U are all Hero's each and every one of U! Thanks for everything that U do! I luv U all. Mont

You have all my sympathy. My husband has just been diagnosed with this too. He is 53 and has always been extremely fit. This was a complete shock to us. We found out on 5 January. He has now just had an operation to remove 90% of the tumor. The doctor had unbelievably told us that this was a 2 hour operation and my husband would be probably home the next day. This has not been the case. He is still in the High Dependency Unit 5 days on and is currently having great difficulty with speaking and cannot move his right arm. We await the results of the operation to see what the new prognosis is.