Hi Geoff, Bad news, the tumour grows back. The NO gave quite a depressing prognosis. Not sure what to do now. 😞 ... View more

Hi Geoff, Sorry to hear about your friend. I'm not having a good time myself lately. Dennis seems to be tired and sleep/stay in bed most of the time. He isn't a good patient either. He developed rash on his body about 10 days ago. I asked his oncologist and he ruled out chemo caused the problem and recommended him to see his GP. Of course, being stubborn as he is, he isn't going. I'm just so angry and frustrated with him at the moment. This morning he vomited and the oncologist said I had to take him to the hospital if he vomited as it could mean brain swelling. Again, he refused to go as he hates waiting for hours at the hospital like the last time we were at the emergency for 7 hours before he was admitted and diagnosed with GBM. He's now sleeping it off. I have no idea how sleep can help. I have no idea what to do. 😞 ... View more

Hi Michelle, I can relate to you about finding it hard to be patient with your dad when he looks well. If your dad wanted to get back to work, let him do it. I doubt he can do it as well due to the side effects of chemo and radio therapy. Anyway, life is too short to do things you don't want to. Your dad may think that he will beat this thing and lives his life as normal but truth is it will stick with him forever. Life with GBM is like a roller coaster ride. It may seem to be a smooth one sometimes but there are always up and down time. I have only experience this the past 7 months. My partner was diagnosed with GBM in August last year. He appeared to be fine during the first 3 weeks of radio therapy. However, his energy level dropped big time in the 2nd half. Once he was well enough, here came the chemo time. The first round was OK as the dose was lower than the following rounds. He's finished his 4th round a couple of weeks ago and at the moment not doing so well in terms of energy level and strength. By the time he feels well enough, he will be knocked down with the 5th round of chemo. Well, I can't give you much advice. Just hang in there and be patient. I know it's not easy and if it helps, try talk to people about how you feel I find it helpful for me to deal with this situation. ... View more

Is it fair to conclude that on insurance company will provide cover for a person with terminal illness? ... View more

Hi Geoff, Last meeting with the oncologist before Christmas was OK. Dennis seems to develop Carpal Tunnel syndrome in his right arm but his GP asked him to talk to the oncologist instead. The oncologist wants to see whether it's from the tumour or not so he ordered an MRI which we will see the scan this evening. We are quite nervous at the moment. The scan in early November wasn't good and the oncologist thought it might be the result from the radiotherapy as the scan was done only a month after the therapy. This last scan will give us some idea how he goes. Hopefully, he will decrease the Dex. Dennis puts on 10kgs in the last 8 weeks and his face starts to get a bit round from the Dex 😞 I guess it can be worse than this. Seeing you mentioned about Flax seed oil, I read from some where that Borage seed oil is better. It is probably from Ben William's book or article. Dennis is a big believer in supplements so he follows Ben's recommendation on the supplements e.g. Borage seed oil, mushroom extract (PSK), green tea extract, etc. Hope Lorraine travels along well with the Avastin. Take care, Nat ... View more

Hi Geoff, Thanks for the advice. How does Lorraine doing? Has she started on the Avastin yet? I heard it was a pretty good drug. I looked into it not long after the diagnose. However, I was advised to wait for the recurrent (if it happens) and then get Dennis on clinical trial as there is no significant benefit for newly diagnosed. It is also very expensive. We have a meeting with oncologist this evening. Hope he will give Dennis another scan soon as his right arm and three fingers (middle - little) have pins & needles the last couple of weeks and the advice (over the phone) he got is increasing the dosage of Dex (8mg to 12mg and now 16mg) which doesn't seem to help. There are so many bad side effects of Dex. He craves sugar badly but that seems to be a bit better now. He can't sleep as well, only 2.5-4 hours a night these days. Fluid retention, pimples on his body, energy level playing up. His brain and his thinking are still good though. Hope we get something good out of the meeting this evening! If I haven't had a chance to drop in here before Christmas, I wish everyone a Merry Christmas and Happy New Year! Take care, Nat ... View more

Glad to hear you had a great trip Geoff. I'm still up in the air with our trip to Europe next year. We already got tickets for the end of May which would be around 10 months after the operation. Your report lifts up my spirit but it's still daunting to take this trip. The airlines rang and left a message the other day to ask what we want to do. You didn't have a stopover to break a trip from Rome at all, did you? While you went to Europe, we did a small trip to Thailand for a week to see how Dennis coped with flying and all. He did remarkably well but a couple of days after the trip he got really sick from brain swollen 😞 He supposed to take 4mg a day but took only 2mg so he ended up having to take 16mg after he got sick and now down to 8mg. It seems to make him craves for sugar a lot and put on 4-5kgs in 2 weeks! His MRI scan didn't look real good either. The oncologist believes it's because he didn't have enough Dex during his time off from radio therapy and what we see could still be the effect from the therapy. How often does Lorraine get to do MRI scan? Our oncologist said the scan was not necessary unless he's not doing well and perhaps every three month would be max. We want to be able to do the scan every couple of months as I heard the tumour can grow incredibly fast. Hope all goes well with the scan next Sunday! Cheers! ... View more

MissyM, sorry for your lost. Three years and two months is a pretty good time though from my short understanding of GBM. My partner is only a bit over 4 months in after his brain surgery and diagnosed. I do wish he will be with me for a long long time. ... View more

All the best Anne Marie. My partner was diagnosed in early August this year and had operation on 8/8. His first MRI after radio and chemo didn't look good but the doctor said it could be the effect from the radio. Fingers cross. ... View more