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!
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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.
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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.
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Thanks ladies, your right, I did feel much better after writing last night and slept alot better too. We will get through this together, one step at a time, its what we all have to do isn't it.
I'm very glad I have found this site, I've been a member for a while (but didn't think I had anything worth putting forward) and just reading various peoples stories and advice has at times made me cry but the thing is, it makes me realise that we are not the only ones going through this (I know, its been said thousands of times before, but I think that until you say it yourself you don't really believe it) and many, many of the things I have read must be far harder to deal with than what we have but the common thread is that we are all fighting a disgusting disease and we all need each other in order to do it.
Jill, I was very sad to read about your husbands plight, hopefully the radiation will make a difference. My fingers are crossed.
Thank you all for your support, my very best wishes go to all of you in your various battles.
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I feel a little selfish posting this when I read so many stories of people going through terrible amounts of suffering but I need someone to unload onto and this seems to be the only place I can find to do it.
My story is that my eldest daughter was diagnosed with a stage three brain tumor last July. She had been suffering from headaches for about 9 months to a year before and I, being me (the you'll be right kind) kept just saying to her "take some panadol". Of course this didn't help. She had a CT scan done in March which came back normal (it was done in b/w, not contrast and the tumor was missed) then she had a fit on a Sunday morning in July and was unconscious. The ambulance took her to hospital where she came to about 30 minutes later. A CT in the emergency ward showed the tumor.
Since then she has had surgery, radiotherapy and chemo. She has two more weeks of follow up chemo to go and then we start the wait to see if it returns.
She has been amazing, she suffers from varying amounts of anxiety and depression at times which is to be expected but no matter how bad she is feeling she won't let her friends and family (except me, thank goodness) know how bad it is for her because she doesn't want to upset them. She has told me that she doesn't want the chemo to end because while she is having it the cancer really can't grow back.
My problem is that I can't appear to be in any way not positive to her for her sake but I am terrified of losing her. Looking up her prognosis on the internet is only depressing (but who can trust the internet I say) and her doctors won't give us anything except "the longer you go without anything showing up on the MRI the better", which from what I have read here is pretty standard. She is also a member of this site so she may just read this. I have already lost a child seven years ago (he drowned in a dam at my parents house on fathers day when he was 18 months old) and now we have to deal with this, I want to say "ITS NOT FAIR!!" but after reading other peoples stories, life hasn't been fair to any of us! I know that I will cope, lets face it, you have too but really sometimes I wonder where that strength will come from.
Anyway, enough! Like I said at the start, I needed to unload and don't have anyone to talk to. My family have been wonderful but my dad is a worrier to point of anxiety attacks so I can't talk to parents, friends are great too but all have there own problems too deal with (real, not imagined) so I don't want to burden them. That leaves me you guys, you lucky things!
I just want to finish with - I love my three girls so much and can't imagine life without any of them. I lost my boy, surely thats enough! Thanks for listening.
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Hi, I am very sorry to here about your mother, I am also new here. my story is that my daughter was diagnosed with a brain tumor three months ago, has had said tumor removed (they took all they could see) and undergone radiotherapy and chemotherapy. Because the tumor is in the brain they cannot take an amount of tissue around the tumor to make sure all is removed, so they know there are some cancer cells left behind. Physically she is doing well but is feeling removed from her friends, feeling different. Her doctors cannot give her a long term diagnosis, all they can say is "we don't know".
She is scared, I am scared, and I don't know what to do or say.
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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.