https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5445#M342 I,m so sorry your dad has bee. In hospital. How is he going now? Sorry for not replying sooner, dad has not been good either. Thinking of you x Tue, 28 Dec 2010 02:14:22 GMT Mands 2010-12-28T02:14:22Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5432#M329 Hi guys, 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. Mands Thu, 11 Nov 2010 09:44:53 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5432#M329 Mands 2010-11-11T09:44:53Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5433#M330 Hi Mands 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. Take care Julie Thu, 11 Nov 2010 21:50:03 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5433#M330 Jules2 2010-11-11T21:50:03Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5434#M331 Hi Mands, 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. Mon, 06 Dec 2010 09:01:51 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5434#M331 Andrea 2010-12-06T09:01:51Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5435#M332 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. Tue, 07 Dec 2010 09:54:10 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5435#M332 Tanyag 2010-12-07T09:54:10Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5436#M333 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 Mands Tue, 07 Dec 2010 10:30:01 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5436#M333 Mands 2010-12-07T10:30:01Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5437#M334 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 Mands Tue, 07 Dec 2010 10:44:52 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5437#M334 Mands 2010-12-07T10:44:52Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5438#M335 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 Thu, 09 Dec 2010 10:18:07 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5438#M335 Tanyag 2010-12-09T10:18:07Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5439#M336 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 Thu, 09 Dec 2010 10:36:52 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5439#M336 chris_martin 2010-12-09T10:36:52Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5440#M337 Hi Mands 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. ST Wed, 15 Dec 2010 05:33:51 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5440#M337 thaker 2010-12-15T05:33:51Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5441#M338 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? Mands Sun, 19 Dec 2010 01:11:01 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5441#M338 Mands 2010-12-19T01:11:01Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5442#M339 Hi Mands My husband was on tegretol but still had seizures. He also had balance issues. Try not to think of how your dad has changed because that will rob you of the now, of the present that you have with him. With GBM there is a high chance he will never get back to 100%. I compare it to someone aging 20 years in a matter of months. It robs us of the person we love but we rob ourselves of the precious time we have left with them if we dont make a conscious effort to continue to reach out to the person we love. I know this sounds cliche but it really is one day at a time from hereon. Try not to get ahead of yourself. Wishing you strength and love during this difficult time. ST Sun, 19 Dec 2010 10:45:04 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5442#M339 thaker 2010-12-19T10:45:04Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5443#M340 Wise words, thank you. It is hard not to think ahead but you are 100% right. Thank you. Sun, 19 Dec 2010 11:00:18 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5443#M340 Mands 2010-12-19T11:00:18Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5444#M341 Hi Mands & thanker, We have just had a interesting week. Dad was put into hospital last Wednesday with what the ambos thought was bad gastro. He had woken to vomiting & diahorrah in bed with a fever. They took him to hospital and was treated for same then rang me for some info which I gave and then drove over (i live 50mins away) to see him and find out what was going on. When I saw him his head was very swollen (like a balloon that was about to burst) and then I noticed a small hole on the top of his head where fluid was coming out. I mentioned this the to staff who hadnt noticed! They then started doing more tests and decided to airlift him to Melbourne to put in a drain. On reaching Melbourne they then said no we want to do surgery we think he has meningitis! Which they did to remove a piece of his skull that had been infected. He is still in Melbourne but is slowly improving unfortunaltey he will be there for Chrismtas which has caused a bit of a rift in the family as not everyone is on the same page anymore. On a possitive note they did a scan while he is there and the tumor is not currently growing. Sorry that was a bit long winded. Tanya Wed, 22 Dec 2010 10:51:22 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5444#M341 Tanyag 2010-12-22T10:51:22Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5445#M342 I,m so sorry your dad has bee. In hospital. How is he going now? Sorry for not replying sooner, dad has not been good either. Thinking of you x Tue, 28 Dec 2010 02:14:22 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5445#M342 Mands 2010-12-28T02:14:22Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5446#M343 Dad id ok, he got through surgery and has had some heavy duty antibiotics. Unfortunaltey he is still confussed and although he knows we are familar he dosent know who we are. How are things with you? How is your dad doing? Tanya Wed, 29 Dec 2010 10:41:07 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5446#M343 Tanyag 2010-12-29T10:41:07Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5447#M344 That must be hard to deal with, are your family all supporting each other? I believe this is very hard on the people closest to the patient. Dad too developed a bad cough that kept him (and me) awake 24hrs and the doctor gave him antibiotics even though his chest was clear just incase. His cough has cleared now but he is now less interactive, if that's the right word. He doest talk unless we ask him something, he will sleep all day and night if I let him, and has no idea of the day or time. He wakes at ten pm and get dressed for the day. I guide him back to bed and he is fine with that. He no longer talks about going home. I think he knows now what is happening. It is a funny thing cos although I have had plenty of time to come to terms with this I still was totally shocked and devastated at sudden decline over the last couple of weeks. My thoughts are with you Tanya Love mands Thu, 30 Dec 2010 02:36:35 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5447#M344 Mands 2010-12-30T02:36:35Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5448#M345 Hi Mands, Yes it is hard to watch someone you love become someone else. I suppose the one consolation as such is they dont seem to be aware of whats really going on. Dad is still happy to see us, can hold a conversation about any topic really just dosent know the details like who people are or their names. The infection is improving and he is more mobile I just dont know if the confussion will improve or if this is as good as he will get. He is dependant on nursing care at the moment. It must be nice and hard having your dad live with you. Sat, 01 Jan 2011 11:22:29 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5448#M345 Tanyag 2011-01-01T11:22:29Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5449#M346 Hi everyone, My name is Melissa and my father has a grade IV GBM. He was diagnosed in April 09. He lives in Sydney,and I live in Brisbane. My mum is dads part-time carer, but generally dad is still able to look after himself. I have joined cancer connections after having a bit of a break down. I dont talk to people about all this because I feel that they really dont understand whats happening and how im feeling. I dont want to burden my mother with my feelings because i am trying to be strong for her, which is what she needs and wants from me. I need to talk.....and to understand..... and to hear from others who understand too. All i understand right now is that my dad is not the same. He cant talk well due to his stutter, he cant walk well, he cant remember things. I can see him slowly deteriorating and I HATE IT. I HATE ALL OF IT. I hope that you can share your journeys with me, and mine with you, so that we can all gain some sense out of this madness. Melissa Sun, 30 Jan 2011 02:27:11 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5449#M346 MissyM 2011-01-30T02:27:11Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5450#M347 Hi Melissa, it is easy to hate all of this! My dad was only diagnosed in June last year so my journey has been a bit shorter that yours. I also dont have the distance you do which I am sure must be difficult. I am about an hour from my dad and I find that too far sometimes. My dad has just been transferred from hospital after surgery for an infection to pallitive care as we have made the decision not to have anymore surgery etc as he is just not up to it. (this was a very hard decision) However he is relaxed, the centre is lovely as are the staff and he will acknowledge us and talk if asked a question and in a weird way almost at peace (i hope that makes sence)He is however bed bound. I think we are more stressed and upset than he will ever be. The one possitive thing for us is that he is totally unaware of what is going on and how much he has deteriorated. But as you say it is soooooooo very hard to watch someone you love no longer be who they are......I also understand about not wanting to burden others my family are all finding it very difficult and I tend to be the one they talk to so I tend to keep how I feel to myself. I hope this site will be helpful to you. Tanya Sun, 30 Jan 2011 12:32:10 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5450#M347 Tanyag 2011-01-30T12:32:10Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5451#M348 Thanks Tanya, I guess there is comfort in knowing that you're not going through all this alone, that others feel the same. As I type, dad is having his first infusion of avastin, the drug his doctors call "liquid gold". Hopefully this helps him feel better, but at the same Im afraid that if this doesnt work, its our last chance at quality treatment. Has anyone else had any experience with Avastin? Melissa Mon, 31 Jan 2011 06:40:10 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Gbm-grade-4-brain-tumour/m-p/5451#M348 MissyM 2011-01-31T06:40:10Z