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Glioblastoma Multiforme (grade 4)

nancys
Posts: 336
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

Seenie44
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.

Stay_Strong
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

lime19@hotmail.com

Thank you

Jennifer 33, Canada

RLR
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.
Blessings
Rick

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
cindysuetoyou
Posts: 508
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:

http://www.virtualtrials.com/survive.cfm

http://www.livingwithbraincancer.net

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)

Mariaol23
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
Genoarose
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

Rose

 
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