I have joined this site in the hope that I can share other peoples experiences with gbm grade 4 tumors. My dad was diagnosed with this three months ago and I was told he had three months with us if we were lucky. They managed to debulk the tumor which is in the frontal lobe, however it was still the size of a fist after the surgery. It was too dangerous to remove any more. He has since had radium and chemo and he is going to the brain tumor clinic at the end of this month to have a MRI and a review of his progress. He has always been a very strong and independant man and he is now living with me and my family. He has no drivers liscence and although he is still reasonably independant considering his condition, he is very fustrated by needing a nurse during the day ( I work full time) and he doesnt realise that he is not the same anymore when it comes to his short term memory, thought process etc. It is very fustrating for him and so sad to see. He talks of getting his liscence back and going home and I know this will never happen.
I haven no idea what the future holds and I would be grateful to hear anyone elses experiences with this awful and cruel decease.
I do not have any experience with brain tumours. It must be terribly hard on your father aswell as you and your family to have to cope with the changes that cancer can bring to our lives.
I am very sorry but I don't have any good news. My daughter was diagnosed with a grade four gbm in July last year. She had surgery, chemo (temodyle in tablet form which is specialised for brain tumors), and radiotherapy. Hers was a very aggressive tumor and within two months of finishing treatment the tumor had grown back bigger and badder than before. We tried a different form of chemo by intravenous and avastin which is supposed to starve the tumor all with no luck. She passed away on October 15. Brain cancer is a bastard for those looking after the patient (my girl was home until she died) but for the patient it seems to be a reasonably peaceful thing. Drugs keep them out of pain and the tumor takes their memory so they don't remember from one half hour to the next.
I am wishing you all the best with your dad.
I will check this site to see if you want chat more, I haven't been on for a long while.
Hi, my dad was diagnosed with GMB grade 4 in July. He had surgery, then 6 weeks of chemo and radio, 2 weeks later he started showing symptoms of the tumour being back and was put into hospital, they did a second debulk and he is now out of hospital and having 5 days of chemo out of the month and has just started his second course. It is a horrible disease, my dad has also cannot drive or do much physically and like your dad finds it very frustrating. It is so hard to watch someone who has always been so independant, strong and a conversationalist no longer being able to be that person.
I am so sorry to hear of your daughter passing Andrea.I have three children and I can only hope that in ever have to feel the pain that you would have and would still be going through. You are so right, this is a very cruel condition and it is a blessing that the patients do not fully understand what is happening to them due to their memory loss. For us though it is avery hard to see. Dad had another MRI and it showed three more small tumors. He is not happy but is still in a state of denial which for him gives him a reason to fight this I guess.
Thank you so much for taking the time to write to me.
Your support is so much appreciated
Hi tanhag, you are around the same stage as me I suppose. Dad is going to start his second round of the 5days a month maintenance dose of tremador. I see his slow decline in health and ability but dispute his frustration he is relatively pain free with the exception of his headaches that are controlled by pain killers. My dad is only 61 and it is awful to see this happen to him
I wish you the best of luck with your journey with your dad, hold on to every moment
Hi Mands, Yes it does sound like our dads are at similar stages. Mine has always been a very possitive man and remains that way at this stage. We have a appointment with his oncologist next week to get the results of the last MRI and will know more then. I also wish you all the best with what lies ahead and that you where you can enjoy your dad. Tanya
Hi Mands. My dad had 2 types of cancer and he also was a very strong and independent man who lived alone despite being legally blind and I was always begging him to move in with me but he always wanted his independence and in the end he was not allowed to stay at his home but sadly he passed away in hospital. You are so lucky to have your dad living with you and please cherish every moment with him. I was with with my dad for 24hrs before he passed and that meant so much to me but I wish I could have had him living with me before he passed. Take care Chris
My husband was diagnosed with GBM IV in March 09 and we lost him in December 09. He too had a tumour removed from the frontal lobe. Like your dad he kept talking about getting his licence back. Depending on where the tumours are you will notice some slight deficiencies over time. My husband's was in his right frontal lobe. He suffered short term memory loss, some loss of language (as in he suddenly couldn't find the words and had gaps in his speech). He also slowly lost mobility on his left side. He was however still able to walk up to 3 weeks before he passed. To people who did not know him well, he seemed fine.
I wish both you and Tanyag and your dads all the best.
Thaker I am so sorry about your husband. It must have been very hard for you. This really is a ruthless disease. My dad has since began to change again and i am certain the disease is progressing now. His short term memory is getting worse daily and he is having more of what he call anxiety attacks but are actually small seizures. He is on 3000mg of keppra a day already. He seems to be very unsettled and says he feels muzzy headed along with having daily headaches. He is also more unstable with his balance. I hate knowing what's happening and just waiting for it. How are you going Tanyag?
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.