Gbm grade 4 brain tumour

[Andrea]

Hi Melissa, My daughter also had Avastin. She didn't seem to suffer from too many side effects, mainly tiredness and a bit of nausea. Unfortunately, for her, Avastin didn't work, she was one of the unlucky ones. She only had three treatments (as they cost us $3,900 each treatment, it wasn't on the PBS) but her tumor continued to grow so we stopped treatment. Her doctor and she and I decided that rather than trying another form of chemo which we knew would make her very sick, more than likely not halt the tumor anyway we would make the most of the time we had left with her feeling as good as possible. Hopefully your dad will have a good result with the Avastin, when we got told about it I looked it up and in America some people have had amazing results. Hoping that your dad is one of the lucky ones. All the best. Andrea

[diannep52]

To all of you above, I have read all of the above responses and I am sitting her with tears in my eyes, for all of you (especially you Andrea, for the loss of your daughter who was so young!) and your loved ones. I have advanced breast cancer, which compared to what you are all facing is nothing!!! Andrea, you are sooooo right, cancer (any cancer) is a bastard of an illness, it doesnt care who it attacks, children, young adults and older people. I know some people recover from cancer and I am really glad for those people and wish them well, but we are talking about terminal cancer here!!! A cancer that has no respect for the patient and definately no respect for what it puts the families through. This is the disease that I HATE WITH A VENGEANCE, and I believe that it is my hate for this disease that helps me face and fight what is happening to my body! sorry, I got carried away there, and I hope you all dont mind that I added 'my two cents worth' but I just wanted to let you know you have all moved me with your story, and I wish there was something I could do for you all. The only thing I can do is hope that you all get to enjoy what time you have with your loved ones, and know that we (all of us on this site) are here for you all. Lots of love to you all. Take care, look after yourselves as best you can, and over all, try to remember the good times. Di 😞 big hugs to you all

[MissyM]

Hi everyone, Dad had his first infusion of avastin a week ago, and is due for another round this coming monday. He is very very tired, and also cant talk or walk well at all since having the infusion. He openly crys now, and seems very very depressed. His most recent MRI shows no further growth of the tumour, but "dangerous" amounts of swelling. Has anyone else had any exprience with Avastin? Any advice would be great. The doctors dont really tell us much, just that things are going "well".... It doesnt look that way to any of us. Hope you are all well, Melissa

[Andrea]

Hi Melissa, I'm so sorry to hear that your Dad is doing poorly, I had a cry because I feel I have some idea of what you are going through. When my daughter had Avastin it didn't seem to affect her too badly, it did make her very tired and a little unwell but that was pretty much it. The bastard tumor inside her head was what really affected her as far as mobility and all the rest of it went because Avastin didn't slow down its growth. Maybe it is the swelling putting pressure on his brain and nerves that is causing this downturn and if so, hopefully the Doctors can get it down with anti-inflammatory medication and he will pick up again, but medications affect all people differently so I'm just making a wild guess. I wish I could offer you more, I am sending you and your dad my best wishes. (I would love to say I'm praying for you but I don't have a very good relationship with the man upstairs at the moment so that wouldn't be appropriate) Hope things improve, big hugs! Andrea

[Rach_87]

Hi All, My mum was diagnosed with a grade 4 GBM inJan 2010. They gave her 12 - 18 months - this was devastating as mum was only 46. It is such a horrible and painful disease to watch someone you love go through - as harsh as it sounds loosing her in a freak accident would have been easier (yes that sounds horrible and wrong) but to watch a loved one be in pain and deteriorate right infront of your eyes daily is just heart breaking. Trying to explain to my kids (her grandkids) what is happening to nanna - is just really hard, especially when you dont really know yourself. My mum had her tumour in the back left hand side - which meant he right side was affected quite dramatically. She ended up with a tingleing/numb feeling in that right side after about 6 months after diagnosis. They changed her medication - as she was starting to swell on her brain - which was actually causing the right side to loose feeling. Mum suffered from seizures - but after the first few she could actually tell you that one was coming on. Towards the end her speech got - not bad, but sluggish - and she got forgetful - she didn’t forget any ones names but she would start a conversation then get half way through and go "what was I going to say" so you had to constantly jog her memory. She used to say that this was due to her medication - the stuff they had her on reduced the swelling , which meant she could walk around etc - but she felt all foggy in her head, so she couldn’t really have a proper conversation - she said it felt like she was really really high.. So it was a loose, loose situation. Mum had Operation, Radio and Chemo. Yeah I feel that it did give us more time - but they had to then stop the chemo, as it would start doing more harm than good (killing the good cells) they did have the option to operate again - but the risk leaving her paralysed was pretty high. By December the tumour had pretty much covered the entire brain. In September 2010 we went on our last family holiday - it was fantastic, just to spend time- whether it be relaxing by the pool, going shopping (mum loved retail therapy) or just sitting just spending quality time together. Mum ended up in hospital 2 days before Christmas - she was mainly un-conscious all this time and passed away 3 days after Christmas. Mum spent majority of the time at home *except for when away for tests* She didn’t want to be bed ridden - so I am glad it was only a week. The doctors were pretty right with their 12-18 months - we got 11and half- VERY special months with her - like you guys have said this is a BASTARD disease - but once diagnosed - It’s the Quality of the time you spend with the person. I hope I havent offended anyone with being blunt in places - but I have been there from start to finish, so if it can help anyone with what they are going through then im stoked...

[diannep52]

Hi Rach I am so sorry to hear of your mums death, but I am so glad that you got to spend some quality time with her - that is the most important thing and its what you will remember the most. All the nasty 'cancer stuff' memories will fade in time, but you will always remember the good times. Take care Di 🙂

[MissyM]

Hi All, Hi Rach, Thank you so much for your post. It wasn't offensive at all - I'm glad that I'm finally able to connect with people that have empathy, understanding, strength and tell the truth about whats happening and going to happen. The doctors just continually say "we'll re assess in a few weeks" or "he's going really well". As far as I'm concerned, they are telling fibs, and just trying to 'keep our hopes up' instead of helping us prepare for the reality of the situation. Dad has had his second round of Avastin this week. Immediately after the first treatment his speech improved and he had much more movement and feeling on his right side. This time round the effects have not been so good, the improvements not so dramatic. I just dont think its working. Dads tumor is in-operable. Its growing around the nerves in the front left lobe (which control speech and movement). The surgeon has told us that dad will definatly become immobile and will need to go into full time care (he wont be able to feed, clothe, bathe himself) if we took that surgical option. So, basically we only have the chemo, radio and the steriods. Latest scan shows "dangerous" amounts of swelling around his tumor, that they cant seem to get down. They are pumping the drugs in and nothing seems to be happening. Im actually having a meeting with his doctors in a week to find out what is going on - if they know or dare to say. He's not coping well, hes very depressed. Im going to be making visits without the kids for a while now, because seeing them makes him very upset. He wants to be able to do what he did before, but just cant. I dont want to upset him. All i know right now is that i feel alone,im angry and sad all at once, im watching my hero leave and i just want to scream at the universe.... Thanks to you all i do feel better....I just wish they could make dad better too.

[diannep52]

Hi Missy M They cant make your dad better unfortunately, but hopefully WE can make your pain less by being here for you! Sending big hugs Di 😞

[Rach_87]

Hi Di Thanks fo your kind words - Stoked we live close so we spent lots of good times together. and i will always have memories! X Missy, Mums tumour was also un-operable - all they could do was cut the top off it not actually dig around and get it all out. Im hearing ya with the doctors - and when they do decide to talk its in what sounds like Jibberish - its like hello - we havent done years of study, put it plain and simple. We were lucky to have a fantastic doctor here that spelt it all out which was fab and she was there till mum passed - but those specialists in the city... Nope dont get them! Its not a nice thing to watch at all - and i wish i could say its gets easier, but it hasnt for me yet. All i can say i spend as much time as you can with them - but you know they are never gone... most nights i head outside and talk for about 5 minutes to the sky - i must look like an absolute idiot - but if im feeling lonely or just want to talk to my mum - well thats what i do or i write to her on facebook and it sounds stupid - but it works. i have had some real downers and just going and sitting with her at her grave you have this whole weight lifted. Your Dad will walk with you no matter what your doing or where you are.. just make the most now while tou can still touch and hold them. Oh and take lots of photos/videos - they are worth more than words can explain. Take Care Chick XO

[Tanyag]

Hi Everyone, It has been good & bad reading all these posts especially now. Dad was transferred to Pallitive care a couple of weeks ago and although required FULL nursing was content if that make sense. You would go to visit him and ask how are you and he would always say great! Last Tuesday we got a phone call to say he had started seizing and the only way they could stop was to sedate him and told us all to come and say goodbye. Dad kept fighting until Monday morning. It was so hard to watch him fight so hard but we stayed with him making sure there was one of us with with him all the time. We didnt want him to be alone. The funeral is this friday, his fight was only 7 and half months but he was so brave and we are so sad that he is gone but so blessed to have what we did. Tanya