Happy Birthday Terese!! Perhaps we should give ourselves a break and sneak out to celebrate our birthday together 🙂 It's nice to know someone understand how I feel even though it's not such a nice feeling that I experience. I try to think that things could be worse for me but when I think like that another thing that come in my mind is that I haven't seen the worst part of this journey yet... How's your husband doing? How are you holding up? ... View more

Hi Sunshine, you aren't alone here. Sometimes when things are bad, I confined with my best friend the worst thing I wish for which is for this nightmare to be over soon. I don't know how other carers can get through this journey but it seems they could and so can we. We may think other carers can handle things better than us but I believe they all experience the same problem and frustration like us and probably react the same way as us 🙂 I have to repeat saying the same thing over and over sometimes. It is the tumour and the treatments that has caused all these changes to your mum and my partner. I sometimes forgot it and got mad at him and when my partner is quite lucid he would tell me to forgive him for being such a pain as he's not himself any more. For me it's like living with Dr Jekyll and Mr Hyde and for him it's like he can't really control himself to be his normal self. Try to enjoy every good moment that you have with your mum and forget those bad moments. BTW, I have palliative care nurse in for initial assessment. It didn't go down well but at least it's in place now. 🙂 ... View more

Anne-marie, I am so sorry for your loss. ... View more

Hi Nicole, I come across the clinical trial that you mentioned. We didn't go down that path mainly because one of my partner's tumour has grown rapidly and there's 50% chance that we would get to try the LY2157299. He also seemed unwell at the time but now looking back to his condition then and now I think he wasn't so bad. He had problem with his speech and appeared to be quite weak then because of the 2nd tumour has grown at the same time as him working with his Dr. to lower dosage of Dex. His speech got better for a while when he got back to higher dose of Dex but has been declining again probably due to tumour. He doesn't want to increase the Dex to see whether it will fix this problem this time so not much I can do to prove. Anyway, a few NOs suggested us to go with Avastin. Yes, there is a big cost involved and there is no guarantee that it will work. We were told it could cost up to 30K and we ended up paying around 10K. Our NO said Roche has changed their patient assistance program and we have to pay for 2 doses instead of 4-6 doses (I never really know how their program worked in the past). Your mum would be smaller than my partner so it should cost less. My understanding is this drug is not a magic drug. It could work brilliantly for some people while it does nothing to others. We have a scan tomorrow to see which group my partner is in. Good luck and take care. ... View more

Hi Harker - nop, no counselling for us. It's been suggested by many but not sure how it works and whether it would help. ... View more

Thanks for the Birthday wishes! It's not quite the same as getting one from my partner but I should be thankful that he's still here with me. 🙂 I just need to whinge sometimes. ... View more

Hi Sandra, I think your son and my partner feel the same way. I think they can't quite accept that their illness is very serious and life threatening. My partner told me that he couldn't accept those prognosis given to him and it's how he keeps on fighting. There's hope and everyday we hear it on the news how people find a different cure for some illness. However, what carers like us feel is helpless when we do our best but we can't see that we help them much. I sometimes cry because I feel helpless. I feel like I try so much but not achieving anything. I try to come to terms with what happening using the Buddhism way... 'let go'. Nothing is permanent. Everything has it own time. It's a cycle of life that you were born, getting old, having illness and die. Sometimes this does not happen in the right order but the end is death and no one can get away from it. I can accept that one day my partner is going to die but I can't let go of helping him. It's so hard not understanding how he feels and what is playing up in his brain. His speech has become a problem and we play guessing game a bit. Sometimes it works and some I just have to say sorry I have no idea what you are talking about. I think going to work does help me a bit, getting away from all these things.... have a sense of normal life, use my brain thinking/solving other problem. I don't know whether you have time to do thing that you enjoy or get away from being a carer to your son. I would encourage you to give yourself a break and have 'my time' and be yourself every now and then. Take care, Nat ... View more

Hi Sandra, Do you know of cancercompass website? I find this site contains a lot of interesting posts from people mostly in the States though. Yes, Carboplatin is a chemo drug given by infusion. It's newer than CCNU (Lomustine) and has less side effects, I think. From my understanding, these second line of chemo drugs only has 10-20% response rate so Carboplatin, CCNU, BCNU, I would say are all similar. I don't know how the oncologists decide which drug you should get first. I think it can be bias based on their own opinion and experience. I think our oncologist did a clinical trial of carboplatin + avastin in brain tumour patients previously and that's why he goes down this path. Our last appointment was just a general review. My partner appeared to be better so his doctor was happy. The problems that my partner has at the moment are extreme fatigue and speech. I have to play guessing with him to try to understand what he talks about. Sometimes he gives up as it's all too hard but I told him I'd rather play guessing game than having no one to talk to. With his tiredness, I just have to make sure that he has plenty of food to eat to give him energy boost. Last time we were at the hospital I fed him with bread, banana, soft drink, mocha, water so he didn't feel too bad. He has had problem with chronic fatigue syndrome for a number of years before being diagnosed with GBM. The treatment and tumours only make him feel worse. He's not really bed ridden but spends a fair bit of time having a rest in bed. I would say a good day for him is when we can have a good conversation in the morning and he feels OK to stay out of bed, go to the couch and watch TV a little bit or have a shower. A better day is when we could go out either for an appointment at the hospital or dinner at a friend's place. He's very independent and tries to do things by himself. It's interesting to see how he would ask what we do in the next few days and he'll plan on how to groom himself, shaving one day, shower the next, etc. If he's done all that the day before, on the day he can stay in bed until half an hour or 15 minutes before we leave to get dressed. We have a scan coming up on 13/9 and see the Dr. on 17/9 so it's something he's looking forward to even though he thinks the scan wouldn't be good. How are you and your son doing? Nat ... View more

I think it's the same as CCNU which was recommended by a couple of oncologist for my partner to have with Avastin. However, his oncologist has decided it's better to go with Carboplatin instead of CCNU, not sure on what basis. ... View more