Hi Anna I would love to grab a coffee with you but you will have to come up to North Queensland to do it! Sorry! You may have read on other posts that my husband has GBM for 8 and a half years now. He would feel very much in tune with you and your feelings I am sure. He can't do much these days but at least give hope to others that terminal doesn't necessarily mean very soon. Hope you are having some good times in a very tough journey ... View more

Hi The short version of a long story goes like this operation to debulk radiation plus Temozolomide regrowth 7 months later with another operation. Then various chemo treatments but mainly Temozolomide at 100mg daily rather than 5/23 new regrowth controlled by thalidomide for about a year, stopped thalidomide due to neuropathy next there was a cystic non cancerous growth and third operation to reduce pressure that had resulted in stroke like right sided weakness. More regrowth and targeted radio surgery with another cystic growth ...operation 3. More regrowth and on to Avastin with the temozolomide that started in 2011 Currently the tumour is under control not growing further and even reducing. in amongst that was controlling seizures that are now well managed with minimal treatment. My husband has always been very positive. He will tell you that he cried for one day when he found out….never since. Which does not mean we have not had our ups and downs. He needs a wheelchair to get around now as the brain damage has resulted in right side paralysis, but that has just been the last 7 months. So while it seems difficult being positive is possible even in dark times, keep a focus on the things that can still make you happy and go for maximising those times and feelings. Whether its a long time or a short time who knows but let there be good times. ... View more

My husband is around eight and a half years after his first operation for a GBM 4 in August 2006. And there are plenty of others out there surviving too. There are plenty of reasons to have hope and treatments are getting more effective ..slowly but surely. Good luck to you and your family wishing you the best outcome possible. ... View more

Hi My husband has just celebrated? 8 years with GBM. Surviving is tough but possible. Out there are quite a few survivors, more and more living longer and longer. I find Cheryl Broyles Facebook quite uplifting Ben Williams from the virtual trials site writes in great detail about treatment options and the American support groups through the American Brain Tumour Association very active on-line. Good luck ... View more

Hi My husband had a course of radiation for a brain tumour. He was at work while he did it just taking enough time off to do the treatments. Fatigue was the biggest issue. We were very liberal with Vitamin e cream so skin effects were minimal. His hair did fall out though. The mask and how tight it was was the biggest problem. All in all pretty well tolerable so do not have too many concerns. ... View more

You should also be prepared to live a lot longer than you seem to expect. My husband is now 7 years and eight months after diagnosis of a GBM with a very similar initial prognosis to yours. Well done for planning to post and share your experiences. You seem brave and sensible and thankfully still eloquent. I am an advocate of denial and indefatigable hope, possibly not smart but different things work for different people. Hope that all goes well for you and that you are still writing your blog for ages and ages! ... View more

with you and wishing you strength and peace. would love to give you a hug,,, sending you a virtual one. Thanks for sharing. ... View more

Hope Avastin works for you. It can be a lifesaver. In America there appear to be people who have been on it for many years , seven in one case. So hope this is the one for you. That Pete is still working is wonderful and that he is still so fit will stand him in very good stead. Not to mention that he has you as support. Thinking of you ... View more

HI Thank you for sharing your story. For being so brave and finding special moments even in the toughest times. You have helped to give me hope for whatever happens. We are still doing okay 7 years in August. One day we will know how to beat this thing for good All the very best to you Irene ... View more

It's a tough choice. I am working, and taking time off when needed. I feel a bit guilty not giving up work but have not had to so far as my husband can look after himself. It is my thing too, gives me time away which can help keep it all together, sometimes it is really hard to manage though. ... View more