Anybody with GBM had the chemo tablet called CEE NU.
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Frequent Contributor
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.
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Hi Peanutz, The Carboplatin you talk about is that a Chem??the CEENU is a Chemo tablet which is very lethal Love to hear back from you and hows things going with your hubbys appoinments and such Regards Sandra
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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
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Hi Nat, Thanks for that info will have a look. Kep my son had a week in hospital as he had a couple of seizures out of the blue. Started the CEE NU yesterday waited for him to be sick but never happened. He has been told by the doctor he is dying didnt take it too good but still is in denial most of the time said " the doctor isnt going to f...ken tell me when I am going to die, he had a emotional morning on Saturday, I found it hard to cope with the emotional side to him, it just upset me so much I feel I am no use to him. How do you cope with it Regards Sandra
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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
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