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Glioblastoma Multiforme (grade 4)

Posts: 335
Joined: Aug 2000

Hello, I was dissappointed to see no posting in this forum. Does anyone looking in, have any information about this menacing tumor. My brother has just survived surgery and a big part of the tumor was removed. This was a primitive cell and may respond well to radiation. Has anyone had any experience with Chemo and what drug was used? We are just at the beginning of treatment and any information will be so VERY MUCH APPRECIATED. Your friend, Nancy

Posts: 3
Joined: Nov 2012


I really appreciate your father strength and wish all patients wll be as strong as him.
My father, 60 years, who I love so much and I can't imagine a life without him, was diagnostic with GBM IV early July 2012, he had only biopsy in august and had 6 1/2 weeks of radio+chemo therapy. Now he is back on a second chemotherapy treatment but he is feeling very weak (right hand and leg barely move, and can not read or speak in a proper way). What really kills me now is whenever I want to speak with him he always say: sorry I can't speak, sorry I can't do anything --> he is being sorry and we can not do anything about it !!!!
I know this is a deadly illness but I feel that weakness is killing my father, he used to be always so strong so wise and so happy (he used to make us laugh all the time) and now I see him lost in a world that I can't understand, and I see in his eyes that he wants to give up but at the same time he is accepting this for us.
If I will have a will it will be: either bring dad as he was or take him, I can't stand the fact that my father feels weak and he is being sorry about that and I can't explain to him that we love him and it is ok, he is strong he has a character and this is killing me.
I sometimes try to imagine what he feels but I can't, I feel that he is lost in a world tat no body can understand. He asked me many times what is happening to him ? why he can not read any more, why he can not speak properly, why he is feeling weak, and I LIED, I couldn't tell him the truth, I know that he knows but I never was able to tell him the truth, I hate GBM and I hate whatever created his GBM.
I hope the best for everybody but I hope that we live proud and healthy or we die

Posts: 2
Joined: Nov 2012

Hello fmkadem

My family is going through similar things with our grandma (diagnosed last week of January 2012, 78 years of age). Her left side has gotten weak and now slowly her right side is. I know it can be heartbreaking and hard when your dad appears to be giving up. My grandma goes through the same stuff and we just remind her to stay positive and try to do as much as we can so she has a bit of independence (her bedroom at home has been converted into a mini hospital room). Just remember to remain strong. It is hard, but we have found that if my grandma feels she is being a nuisance to us, that is when she feels like giving up and becomes negative.

Posts: 1
Joined: Mar 2013

Hi ! 

My mom was diagnosed 3 weeks ago with GBM Stage 4.  It was removed and from what they tell us most of it is gone.  I was hoping that you would be able to give me some information and support as we start chemo and radiation.

Please contact me if you would like


Thank you

Jennifer 33, Canada

Posts: 36
Joined: Sep 2009

Nacy: I am sorry to hear about you brother. Don't give up HOPE. God can and will help him through this. I was diagnosed just about 4 years ago (Dec. 15, 2008 and had surgery on 1/13/2009). At that time my surgeon Dr. Healy removed a 7.5 cm tumor. I then went through 30 treatments of radiation and I have been on Temodar chemo ever since Jan/15/2009. I have been doing very well( i say about 95%). I used to have MRI's every 2 to 3 months. With my last 2 coming back so good they have decided to now go every 6 months. I am still on the same Temodar chemo and I'm told I will be for the rest of my life as long as I keep tolerating it this well. If you would like to talk about it you can call me at 419-592-1226.

missy 1994
Posts: 8
Joined: Feb 2013

My granddaddy has the same tumor, I am scared because it never really sunk in at all and everyday I read a lot of stuff about this tumor and I still remain to be positive because although there are a lot of horror stories about this tumor, there are also the glimmer of hope that there are survivors some even live years!

I know my grand daddys old, 75 but I am not gunna give up- I am looking everywhere for answers,advice and information. I have probably done more reading now in my whole entire life. I know that I live in the UK but I have no where else to turn to, my parents are dead,brother and my grandaddy is the one to be my parent so now it's all so scary for me.

Reading peoples experiences here helps a lot, it makes me feel a bit better and sometimes cry too. My grandaddy had his tumor removed but not fully there is a small bit in there still and he has undergone radiotheraphy with a course of steroids and he was fine once the tumor was removed and radiotheraphy I had the sound of mind person back into my life BUT this February I saw a dramatic decline in his memory,his state of mind and everything was going crazy so he was omited to hospital, they found out he had pnemonia I think? because he is sick and old if I am honest with myself, thats why he got it and I don't think this is the case with all cancer patients as I am not wise enough on the subject.


The doctor explained to me the radiotheraphy only helps contain the cancer from not spreading or getting worse and does not kill the good cells like chemo does but again, I am unsure on it all as it is all overwhelming to take in as I don't have any other family to support me or fully advice or help me absorb this all in.

I am scared if I am honest as I let the horror stories consume me and people like the nurses tell me horrible things when that is not even their job to do so, it is the consultant who deals with his case. I remain positive every single day, pray to my mum for courage and strength and pray for everyone who is going through this situation too. I like reading the stories because knowing I am not alone helps me a lot.


Positivity is the key, I sure as hell feel like I have had to do a lot of growing up lately but I personally take everyday as it comes now and cross every single bridge when it comes to it.When people tell me negative things I push it aside and the important thing is I have this pact with my grandaddy to never give up!

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Dear Missy, 

Your situation breaks my heart. I wish you were closer to me so I could help you in some way, maybe take you to coffee or bring a dinner or something. Please know that my thoughts and prayers are with you.

I won't go into all the details about my situation except to tell you the main facts: my then 25 year old son, perfectly healthy, was diagnosed with a grade three anaplastic oligodendroglioma. He was told that he had 3 to 5 years. He died after 3 1/2 years, on Oct. 15th. My heart is broken and I'll never be the same. But I know he's in Heaven and that I will see him again some day. 

You are doing all the right things, Missy. Researching, reading, talking to people, being there for your grandfather, and most importantly, keeping your hope alive. It's a battle, I know. But you need to live with hope. Otherwise, it's not much of a life, and every minute counts, so good for you for being positive and for fighting for your grandfather. You are making sacrifices in your own life for the sake of your grandfather (staying with him, taking care of him, not doing stuff with friends). You will never regret doing these things later on in your life. One of the things that brings me the most comfort is knowing that I was always there for my son. You will be so glad that you were always there for your grandfather. But be sure to do some things for yourself too...that's very important. You need to be strong and healthy in order to help your grandfather. 

GBMs are bad. I would be not be truthful if I acted like they were not terribly serious and deadly. But sometimes for unexplained reasons, people are able to fight back and hang in there. I was like you...I didn't dwell on the bad stuff and I tried to always think and believe the good stuff. I think you are wise to be that way. If I had to do it all over again, I'd be the same way. 

Here's some links that might help you have some hope:



Please keep posting and let us know here on CSN how you and your grandfather are doing.

Love and blessings and strength and peace to you,

Cindy in Salem, Oregon (West Coast USA)

Posts: 1
Joined: Sep 2014

The reason nobody coments is that very little porcentage of people survive after the tumor was removed.  Las year my brother  had a brain tumor removed and it was gliobastoma multiforme grade 4 he hag his surgery on July 17 and died on August 30. So good luck with your brother.

Genoarose's picture
Posts: 1
Joined: Sep 2014

  I was diagnosised 2 years ago. I had surgery, most of the tumor was removed, then had 30 radiation treatments and 6 months of Chemo pil (Temodar). After the Chemo, my Oncologist wanted me to continue the Chemo for another 12 months, he said he didn't know of anything else he could do, so I went to Cleveland Clinic for a 2nd opinion. I qualified for a new study program I am on the study for a 1st occurance. After 3 months on the study and another course of Temodar, my remaining tumor had shrank 50%. Currently, the tumor has continued to shrink although minimal, but it is certainly not growing! Below is some information on the study if you're interested. Good luck and God bless you!

Recurrent Glioblastoma Treatment Options

If glioblastoma (GBM) returns, doctors may recommend additional surgery, radiation, or chemotherapy. However, in some cases, surgery and radiation are no longer possible. In those cases NovoTTF Therapy may be an option for patients. NovoTTF Therapy is a noninvasive regional therapy that targets dividing cancer cells in the brain and generally does not harm healthy cells. NovoTTF Therapy is approved as a monotherapy, a stand-alone treatment option, for patients with recurrent GBM.

Learn About NovoTTF Therapy


Posts: 1
Joined: Aug 2017

hello, I just want to hear any stories of people that have gone through this.  My dad was diagnosed in January 1 of 2017,  and passed away May 14 of 2017.  He did chemo and radiation but the cancer was so aggressive. He had a seizure one morning before a hike and that's how it was discovered. It killed me because his personality was never the same so I felt like for those five months I could not tell him how I truly felt. 

 It seemed every time I thought he couldn't get any worse ,  I was quickly corrected.  Vision got horrible ,  he did not make sense most of the time , and his speech got very bad.  

 Nothing is worse than having to help your dad get dressed because he canT dress himself. It's the emotional aspect of it watching him be so vulnerable. 


 In that short five months I watched him lose his hair ,  gained lots of weight,  from the radiation and chemo,  although I could see his legs and arms losing the muscle they once had . 


 Before treatment he always said I'm going to kick *** and take names ,   He seemed eager to go to treatment and I remember him telling me it's the little things in life that he values most now .  After about a month of treatment he would sleep the entire time to treatment and the entire time back .  He was very nauseated and complained of being sick . 


 The days  leading up to him passing away , he was under hospice care unable to walk, talk, or eat.  We were given a book from hospice that talks about the last days of life's and I can't exaggerate that those books read it Word for Word.   I would read something in that book and it killed me because I would see my dad Doin the same symptoms I had just read about.


He would  spit out his morphine and medication and we would try to give it to him , the morning he passed  he had a seizure .  The hospice nurse prepared us and told us that it would be most likely the thing to kill him  and it was. 


 My dad died while I held his hand ,  and my mom by his side .  


 Maybe  this is not the best place to talk about it and I do not want to scare anybody who has been diagnosed because everyone's experience with it is different I just really wanted to share my Personal  experience with it .


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