My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
How did you find the teleconference? I was looking at the slides of the talk. Whenever I read research about developments I'm often left feeling a bit empty. Lots of reseach, hope, but no really new treatments available now. But at least the reasearch is going on. That's the important thing.Â
Let us know how you got on. And well done for getting a place.
Conference was very interesting and certainly made me a bit more hopefull, there are so many new drugs they have found that have given excellent results. The cosultant taking theconference Dr Fyne from National Cancer Centre says that in the 20 years working with high grade gliomas he has never been this excited, each indivdual tumour is tested to find the grade and type of tumour much the same as here but it is also tested for genetics to see which other treatments to add to the standard tmz and radiotherapy, there is an elderly gentleman who's gbm grew back after standard treatment he was given 2months of Avastin the tumour shrunk and is still stable after 2 years with no further treatment. There is another man same again tumour started to grow after standard treatment he was given 6 weeks of Zakeema (dont know if spelling is correct) the tumour disappeared and again after 2 years has never grown back. He was talking about different vaccine and immune therapies and lots more new drugs and ways of delivering them you will be able to log on to the site tomorrow and hear it, there is so much more and my spelling is hopless. Dr Fyfe is offering free clinical trials i dont know if it would be a valid option for us but i am going to call him anyway to have a talk with him. Why arent they doing these things over here.
Had a really stressful few hours- son at wheelchair centre for a new seat this am - went really well. Rog doing good and helping after meal tonight, but (my fault threw extra potatoes away - cooked for son's lunch at college) me mental!!!!! So very tired. It is almost 12 months since fit, hospital, op and diagnosis, and I know I am twitchy. Next MRI on 22nd December. I think that the scan will show a problem as Rog has great difficulty in trying to remember things- gets there eventually, but it can be very trying!! Feel very lonely at times - hospice have been in touch (that was hard - had to be done) so maybe it is time to avail ourselves of their help - anyone done that? and has it helped? Sleep tight everyoneXX
Sorry you have had a stressful time, leading up to scans and the results is a terrifying time, i hardly slept in the weeks leading to the scan and waiting for them was absoutely horrendous does it ever get any easier. Fortunately not had any dealings with the hospice, i am sure they will be very helpfull if you need them, hope tomorrow is a little less stressful for you, if it can be in BT world.
Hi there all- Visit here a lot but first time posting on this thread - sorry, like all of you, to be here but pleased to find you kind and helpful people and glad to talk..
Crazy Horse- I know what you mean about the empty feeling when reading about new early stage research- that feeling of frustration and fear that yes- wonderful- they are moving on and maybe will find some fantastic new treatment but that it may still be too late for all of us now... I hate the sense that we may miss the boat... or that there are already things available in the USA that NICE don't want to recognise in the UK yet... aaargh it makes me want to scream at times.. Is it anymore advanced in Holland ?- my husband's son is half dutch - lives in Waljwick (can't spell it) and has been coming over regularly to see D these last few months .. (D lived in Holland back in the early eighties)
My only fear is not asking the right questions re treatment options but have to say our consultant is very committed to protocol and following ONLY standard treatment etc etc - and more or less discounted all the homeopathic/herbal things that we've explored - I have read a lot about alternative approachs etc and D takes a lot of supplements - Can't know yet if they've helped (1st real scan since the op will be in March) but he came through ist stage of treatment with very few side effects and perhaps it may have been a little to do with that.. Whatever, it helps me to think I can be giving him some good stuff too - I can't stand that feeling of helplessness that BT gives you ...
- Gayle - glad to say hello to you at last - Looks like our fellas are running along together as far as diagnosis dates go etc so hope we can get to know one another and give each other some support along the way...
To everyone, Hope you and your loved ones are all as well as can be tonight - It seems we're at so many different stages - maybe I'm still at an unrealistic one because I still have strong hopes that good things can happen and that we should never give up hope .. Have read a lot of sad posts over the last few weeks but also feel the real solidarity and care for each other - and also know our loved ones are individuals and not statistics
Nice to speak to you although i wish it was under much better circumstances. How is you husband doing has he started the temodal 5 days yets, Martin has had 2 sessions the first was terrible he slept about 29 hours a day, the next session wasnt just so bad thankfully, hope you are.
I agree with you 100% about advances in treatment and hope and pray that they find a breakthrough before its too late for all of us, some of the American therapys sound really promising hopefully NICE will start to recognise this, i have contacted a doctor in America who recruiting patients just now for new trials i dont know if its going to be an option, but no harm in finding out we would do anything to help our loved ones.
Well done to you and your teleconference - (it sounds very hi-tech to someone who is dubbed a "technophobe"!). Seems like you heard a lot of positive things from it so that can only be good. When my dad was first diagnosed I went a bit mad and started emailing places in America - Cedars Sinaii in LA - fine if you have a spare million! There seems to be a major pioneering hospital in America for BT's (cant remember the name doh?) - we definatley need something like that here. Im no expert but it looks to me that America treats GBM's much more aggresively and are more open to trying new treatments instead of sticking to the old adage of "its not been proven to be effective in clinical trials yet". A few months ago I stumbled on an American site called YPSG (Young People Surving GBM i think) - it was really interesting looking at these survivor stories, and their treatments. Would be really great if you hear back from this Dr Fife - here's hoping. love to all
I saw the site Young people surviving GBM and it is very positive filled loads of people who are managing to beat this thing for many years.
The Americans certainly do treat it much more aggressively and try multiple treatments they use as well as standard treatment generic treatment on top giving fantastic results.
Have a look at national brain tumour site and you can read some more about it. At the moment Dr Fine is looking for more patients for free clinical in the states i am looking into it i dont know if it is a realistic option but am certainly going to find out more, its another bit of hope to hang on to.
Will defo have a look at the site - is it national brain tumor uk? Might email Dr Fine myself if he's looking for more people! Hope is something we need to cling onto now because if you dont have hope, well you dont have anything (as the saying goes). Went down to my dads earlier today but he's finding it difficult to get up as the tiredness is so debilitating, he only managed up for an hour before he had to go back to bed. Just back in from the pictures, went to see the changeling with Angelina Jolie - was a brilliant film but slightly disturbing as it was a true story - now prefer cheery films so shouldve went to see four christmases! Hope all is ok at your end. lesley xx
Being on the go all day trying to get some christmas shopping done while the shops are fairly quiet. Sorry its national brain tumour usa unfortuntley, thats why it might not be an option, but we will have to wait and see what Dr Fine and Martins consultant says.
The tiredness is terrible, Martin stayed in bed till 3 o'clock today and says he feels like going back but i think he is only joking, its not nice to see but hoopefully it wont always be like this, is your dad eating much?
Thats good you went to the pictures, i like true stories but they make me cry too, i do enough of that at the moment, take care.
