I don't mind you asking me anything in relation to GBM, as you may have read my daughter has just passed her 7th year of survival with gbm. Her tumour was removed, I say removed in the sense as much as they could remove, she had 2cm tumour left which has also gone, her last MRI Feb. 2013 showed no signs of visible tumour. She received rad. & Chemo. the standard treatment as they call it. I requested that Nicole should get more chemo to totally eradicated the 2cm tumour. After much debate and research etc.I told them she had no9thing to loss and everything to gain. They did agree in the end to give her extra 18 months chemo. Today she is back at work fulltime, saw her son start kindy/primary school and then high school. She is med. free and living a positive life without any speech, weakness etc. problems. I have written a boo about her journey and to inspire others who are travelling the same path as Nicole.
this is a non-profit book and available at
Feel free to ask me any more questions if need be.
Take care Femme
I am new to this site and have recently had my mother in law diagnosed with two GBM IV in early October 2013. She has had surgery 3 weeks agon on one tumour that was located on the right side above her ear and the other one (which is smaller) is located in the forhead region and is apparently inoperatble due to location (I belive this would significantly effect personality in this area). She is currently on Kepra and Dex to prevent seizures and growth of the tumours. Chemo (tablet based at home)commenced a week and a half ago and radiation therapy starts this afternoon.
The most significnat effect of the medication that the family is struggling to deal with on a day to day basis seems to be the aggressive tone of her conversation and getting quite emotional and aggressive about things that on the surface seem to be very petty. Has anyone else experienced this? I am struggling to understand how much of this behavoiur is controllable and what is not and how we should approach her when her behaviour is what would be unacceptable in normal circumstances (obviously what she is going through is not normal however). I am seeing her pushing her family and closest friends further and further away and I fear this will get worse as the fatigue from radiation is added to the mix of medications her body is enduring. Would love to hear from anyone that has experienced similar circumstances and how you have learned to accept/deal with this behaviour for a GBM patient.
I would love to see her happiness and quality of life maximised for what ever time period may be granted to her and what I can do to ensure this happens for her.
Love to all going through emotional times, thoughts with you
It has been awhile since I have been on the site.
My husband was diagnosed with GBM stage IV in June 2011 and passed away in June 2012.
I am not sure if you have read all posts on this area, as there is some great info and support.
The cancer council has a wonderful book they have put together about GBM, the info is on the site.
See how you go, if you want more info or a chat.
Hi min 1982, I'm sorry you've had to find yourself on this site. Our journey began 12 months after Groenvelt68's and I gained heaps of insight reading the posts from 2011/2012.
Your mother in law's behaviour can be affected by fear, tumour position, dexamethasone....everything really. GBM is a terrible disease for all involved. As difficult as it is to accept the changed behaviour, your mother in law needs all the support and love you can give her.She may/may not be aware of her behaviour and she may/may not be able to control it.
When my husband was diagnosed in June 2012, he found it really hard to cope with the way the dexamethasone made him feel. Fortunately he was aware of this and he would try to moderate his behaviour. As his dex was reduced he rejoiced. He never managed to be off it completely before recurrence 5 months later, and when the dose was increased, he felt he was able to control himself since he knew what to expect.
Not everyone is able to do this so family and friends need huge amounts of patience and tolerance.
My husband survived for 13 months despite treatment which included surgery x2, gliadel wafers, radiotherapy, temozolomide, antiepileptic drugs, and Avastin. He was also involved in a clinical trial.
I wish you and your family all the very best.
Hi Min, my hubby has a Gr 4 GBM & we have just finished radium (6wks) & he is off chemo (tablet) for a mth break. He was weaned off the dex last half tablet last Sunday but he hasn't picked up since we've come home from Brisbane Oct 25th & isn't eating & sleeping a lot. He too gets quite agro mainly with me over mundane things but from this site & info I've read this is normal & one must learn to deal with these mood swings & aggressive reactions. hey it's hard but I say to him don't speak like that love, & he apologises. Dr only today put him back on dex to see if it will help re appetite. I hope so, we are facing a hard road & the worst is yet to come. be patient with your m-I-law & try to explain to family & friends that this is part of the dreadful disease. Keep in touch. I find this site quite comforting for me knowing I am not alone on this horrible journey.
he had 2 craniotomies within 5wks & he was a fit healthy man prior to this ..had 3 seizures on July 13 & our nightmare began.
hi my name is christina. My husband was diagnosed with a gbm on oct 17 2013. He endured a 5hour surgery to remove the tumour which was the size of a mango. Unfortunately they couldn't remove it all. He is currently doing 30 sessions of radiotherapy and is on 140mg temodal. Im so scared as they are not hopeful and prognosis is grim. I know that Stan Zemaneck, Prof Chris O'brien and andrew olle also fought this horrible nasty tumour, a fight that none of these courageous men won.
I would love to hear from other people who are also familiar with this monster.
Many thanks xx
Hi everyone, please check out my facebook page on braincancer GBM, you will read the inspiring story of my daughter who is heading into her 8th year of survival with GBM......click on the following to take you there, share and like and be part the support & awareness page.
I wish each and everyone a healthy & happy Christmas and hope that 2014 may be the year a cure is found for braincancer.
Hi christina, my husband has a brain tumour as well. But unfortunately they cannot operate due to its positioning.
We are almost at a 2 yr milestone.
I'm not always around on the site but if you PM me I check my emails regularly. I'm happy to chat & be a shoulder to cry on if you need it.
P.S hubbie found having Miso soup (the japanese soy based soup) helped increase his energy levels whilst on radiation
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.