Hi, I'm Jo, my husband has grade 4 GBM. His original tumor was found in July 2009. It was a grade 4 methylated tumour. His surgeon achived a 95% resection although its location in the ocipital lobe and its size left him with some disability around numbers and direction. His short term memory has also been effected. In August 2012 a second tumor was found during his routine MRI scan. This time it was the frontal lobe and located just below the surface. A 100% resection was achieved with the aid of Gliolan, a dye used for detecting brain tissue. This tumor was also a grade 4 but unmethylated this time. I'm here looking for people who are suffering from GBM or supporting someone with GBM.I live in Sydney and could really do with some support. I am afraid of what lay ahead for us. Some help understanding what other people are going may help to provide some normality, if thats at all possible. I also want to help support others in their journey too. I look froward to hearing from you soon.... Jo
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Hi my husband has a GBM too. I have no idea about methylated or unmethylated but my husband was diagnosed in August 2006. At the moment he is nearly two years progression free. There are issues of course, for Jim his inability to read and difficulty finding words has been a huge frustration. But we have good times too and live with hope always. Things are getting better all the time. Stay alive for long enough and someone will find a cure. We are sure of that. Even the Gliolan is new and seems to be making a difference. We are not in Sydney so although I would love to meet you for coffee that would be hard. We are in north Queensland. With you in spirit. All the best to you Jo Irene
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Hi Jo We live on the Central Coast and are travelling to RNS for radio 5 days a week. In Dec my wife of 35 years had a golf ball size Grade 4 GBM. She is coping really well with both chemo and radio therapy but is only week 2. They got hearly all out and apart from some short term memory loss she is pretty good. I am like you so fearful of what the future holds. Where is your husband being treated. We were told that Royal North Shore is the best of the best for treating brain tumours. Keep in touch. Tezza
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HI Husbands GBM Grade 4 first diagnosed in Nov 2011, Surgery took 70% he did radiation and chemo, followed by chemo till his new tumour was found in Dec 2012. Surgery this time with Gliolan which we are told there was 100% resection, so going through radiation and chemo again. We are upto week 4 of radiation and we have noticed that he is far more fatigued this time around. Iam also in Sydney and pretty much scared to death at times to think of what our future holds fighting this. Min
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hi, my husband passed away from colon cancer so not gbm but i know how scary it is being a partner of someone who is very sick... the ups and the downs, the worry etc... if you need to chat im here for you xox
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Hi, I'm so sorry to hear about your husband's passing. My thoughts are with you and your families. And, thank you so much for replying, I appreciate you reaching out to me. I'm honestly overwhelmed by the responses, it's given me a huge boost of enthusiasm to fight this thing till the end. If you want to talk,, I'm hear for you also. Take care Jo
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My brother was sent in to NSH last week and had a large Malignant tumour grade 4 taken out. The feed back he seems to be getting is good he is so positive where as I feel like I am float on a rough ocean. I have noticed he has trouble with short term memory loss and he is ravenously hungry,his left foot is giving him strange sensations also feels like everyone is staring at him when he goes into elevator or food hall. He is hoping to get out this Friday and go home to the Central coast He will need radiation and chemo I live in Gloucester. I just feel a bit frustrated trying to get all the information about his care. I am able to take him to NSH for treatments He seems to think he will be able to catch the train there and back on his own
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Hi Ronan It is certainly a living nightmare. My wife is nearly finished her second week. After my wife was operated in Dec we were ushered out of the John Hunter without much info. We were contacted by the Cenral Coast Co-orindator for Brain Tumours(Nurse) who gave us heaps of info, She told us that RNS is the best as they specialise in the Brain. Dr Helen Wheeler & A/Prof M.Back and they have access to all the medical trials. They have accommdation available and there is also a travel scheme where they assist with payment of travel and accommodation. There is also a group called Canassist who supply accommodation. Everything I read about this sh## disease is you have to be treated by a Drs who specialise in this field. Your brother will have a month off and then start 6 weeks of Radio/Chemo. Chemo is a tablet at home. My wife is coping well so far. If you need anything don't hesitate to contact. Tezza
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Hi Min, Our first time in 2009 was followed up with radiation and temadal oral 5 days on 2 off. Last august when the second tumor presented it was more of radiation but this time we're on 3 week cycles of chemo, carboplatin infusion. It's not nice. It's administered with zofan and dexemethzone. The dex is awful. We have rage that cannot be reasoned with, this places an enormous strain on our relationship. There's also the usual vomiting bouts the day of treatment. Energy and mood levels nose dive with the drop in platelets so his ability to cope with the poor prognosis diminishes. I have to work really hard during this time to keep him motivated to fight. We are at POW, Bernie kwok, surgeon. Dr smee radiologist and Elizabeth Hovey NOC. They are a formidable team and have done a brilliant job with my husband. Thanks for sharing your story with me. Jo
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Hi Tezza, I think best is where you're most comfortable. We are at POW, they have been very good. My husband at times doubts The descisions made and constantly questions his doctors. He was a GP before diagnosis so he never accepts new treatment without questioning it. For me, I don't get to be heard. My fears, concerns and issues balancing daily life get left behind because cancer is our priority. I'm scared. With us, we both and have adult boys from previous relationships so even the family extentsion kinda let's us down. Don't get me wrong, relative to others stories, we are lucky. It's the fear, it drives us nuts. Thank you for sharing your story, you're in my thoughts. Jo
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Hi, Welcome, I wish you didn't have to join this group! I'm Mel, My husband Ben has a stage 3 astrocytoma brain tumour almost a year ago, it is located in the thalamus. It cannot be operated on, radiation has been completed (6 weeks) with no change, chemo (temadol) has just started with round 1 completed. We are in our 30's with 2 children, a 1 year old and a 3.5yr old. We are in Perth, so too far away for catch ups but I thought I would offer our story & support. He is on dex as well, and the BT coupled with dex- makes for a rageful husband. We have experienced all sorts of outbursts over the last year- some more terrifying than others. The fatigue, insatiable hunger, the ability to be easily confused, it is somewhat tiring. As you mentioned, cancer is number one. You as the carer, quite often put yourself last- for necessity. We are extremely lucky, we have been given time, we are utilising this time to "create memories" for our girls. The one thing that has allowed me to cope, is going to the gym. I joined a gym which has a coffee shop, beautician etc. I make myself go, and I feel so much better for it! Even if it is just to sit down & have a coffee & read the paper. Change of scenery- away from the thoughts "what tablets need to be given" "what food needs to be given" etc We have a hard road ahead of us, you & I both. Trust me when I say this- don't think about the future, don't worry about what it's going to be like. Yes, it is going to be shit- and all kinds of scary shit- but don't deal with it until you have too. Enjoy today, enjoy the moments of clarity & laughter. Relish in the moments where you catch a glimpse & smile lovingly at each other or snuggled into his chest. Take a deep breath, smell him, cherish him and all the things you love about him. Smile & know eventually this will be over, and you will be ok- eventually.
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Jo We have the same team at POW, with our wonderful co-ordinator I feel comfortable and confident that we have the best treatment options for him, for where we live. Discussion of follow on chemo sounds the same as your husbands. Until now we have been fortunate to have only had dex for a few days following both surgeries, so will be prepared for that. His drive to fight this has to date been awesome, I hope this stays true for some time. Min
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Min that's great that your hubby is keeping a positive mind, it can be hard to do. Elizabeth can be less than positive. I understand that she needs to 'keep it real' but in this fight you need hope otherwise, WHY.. I don't go to the visits with my hubby, I'm at work and he's ability to do these things is still very good. We have hardly any disabilities in fact, just short term memory loss and rage with Dex. Otherwise, life is as normal as it can be with cancer. We're in Coogee, if you ever want to catch up for a coffee, let me know. Life for us isn't easy and support can help ease the burdens. Take care, you're in my thoughts, Jo
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Thank you Irene, I find some comfort in your story. Your husbands journey of almost 7 years is somewhat of an inspiration to me. I read the survival stats and I find myself terrified by what time we may not have. Although we are in our forties and have known each other over many years, we married only 2 weeks ago. I don't feel my circumstances are any more heart wrenching than anyone else's. I'm pleased we're not raising a young family and I'm very grateful that his independence is still intact, for now anyway, I'm just being selfish in wanting to make memories with him for as long as I can. He is my greatest love. We have our next MRI on Feb 22, fingers crossed nothing has changed since the last one. The emotions in my house are starting to change in anticipation of that day but we continue to plan for nice things too. Again, thank you Irene. I hope we can stay in touch. Sending lots of positive thoughts to you both. Jo
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Hi Mel, Thank you! You are an amazingly wise lady for your years. You are right, it's going to be a hard road ahead but with your attitude and clear thinking, you will be OK, eventually. I'm 45, my husband 51. He is a retired doctor, GP however can not practice anymore. I'm a senior executive in corporate Australia. I am still working, in fact I changed jobs only 5 months ago so life at work for me is pretty hectic. Between work and home I try to fit in a gym session, it's almost impossible and that's a cause for frustration for me. I love my healthy life and need to exercise to free my mind of all things that trouble me. It was never going be easy, right? :). Anyway, although you're in Perth I'd like to keep in touch. I'm sending lots of positive thoughts to Ben and you and your girls. Bye for now, Jo.
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Ha less then positive is right on. He is doing well in regard to any disability, he can't wait to get back to work once radiation is complete. I think being stuck at home with three kids for the entire school holidays had something to do with that. Coffee sometime sounds good. Min
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Thanks Tezza I hope your wife and yourself are doing well Thank you for the info My brother has been seeing Dr Helen Wheeler and Dr Back He had his scan yesterday after the month off of radiation and chemo All good so far. He has started his chemo tablets today for five days Then after 4 weeks he is going to Gosford to Dr Mathew Wong for check up and more chemo tablets. I have noticed that he is now losing weight says he isn't hungry he does have weight to lose after being on the dex. Have you found the same with your wife ? My brothers memory has come back after the op he had to remove tumor, but he is week on his left side walks like he is a bit tipsee. Has your wife had any seizures ? I have been hearing about them and I worry about it happening to my brother
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Ronan Helen and Michael are great people. My wife had 2 seziures about a month after finishing radiotherapy. She recovered from them and is now in Gosford Hospital for swelling on the brain again caused by chemo. She is currenlty very weak and confused but Marina tells me she will come good. In fact this is actually a good thing as it means the cancer is sensitive to the treatment and causes flare ups which is the cancer dying. Be very aware of any headaches that last longer than normal. It is a very long and hard battle and I have certainly had my ups and downs but never give up hope there is amazing research going on at the moment so we have to get them to hang in. Coleen Stevens is the co-ordinator for the Central Coast Health Brain Cancer she is a great person if you have not spoken to her you should. Send me a Private Message here, I am happy to help out if I can. Terry
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Wow Min I am sorry it came back But great news this time around they got a 100% resection Surely he will recover from the radiation given time. It seems that we can not plan our lives. My brother has GBM grade 4 diagnosed last Feb '13 he is copying so far but does not have the support at home Argh ! I live 2 1/2 hrs drive from him and try to take him to his now monthly check ups, mri's etc Take care we all get scared its a roller coaster Di
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Wow Min I am sorry it came back But great news this time around they got a 100% resection Surely he will recover from the radiation given time. It seems that we can not plan our lives. My brother has GBM grade 4 diagnosed last Feb '13 he is copying so far but does not have the support at home Argh ! I live 2 1/2 hrs drive from him and try to take him to his now monthly check ups, mri's etc Take care we all get scared its a roller coaster Di
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Hi Di Yeah well 3 weeks ago it all changed again with his first post radiation MRI where they found a new tumour. Unfortunately this sucker is inoperable. We took our kids for a holiday, he returned to work on Monday (not what I wanted) and has another scan tomorrow to see how much it has grown in this time with no chemo (3wks). Palliative care meeting next week and new chemo to start. It must be difficult for your brother witout home support, just the thought of getting around is difficult when you are not allowed to drive. Being at distance from loved ones is hard, especially when there is illness involved, my mum is in SA struggling with bowel cancer and chemo. Sometimes I just want a big motherly hug from her, maybe one day soon. Who knows what tomorrow will bring! Take Care Min
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