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.
I Hope that you and your loved ones are all doing well, my husband is doing very well, i still have not got my head round all this yet i still cant believe that he is so unwell, he only had a few minor dizzy turns now a ll of thiswhat a mess. All you guys seems so much more knowledgeable than myself where did you guys get all of this information? Did your hospital s give you all this information my hospital have not told me very much all you guys on here have given me lots more info, thank you very much. How long do people tend to live with this tumour is it true that some people can live for 10 to `15 years and some peiople only get 2 years. If any of you guys know could you let me know thank you very much.
Dear Izzy yes, a very small number of people can survive many years and we all hope our loved ones will be amongst them , but sadly the reality is that the average survival with treatment is around 14 months. Our consultant has one patient who has lived 8 years with GBM, and has not had the standard treatment everyone gets now. some people get much less time. there isn't really any way of knowing who will do better at the start but generally things like younger age, relative fitness and a lesser severity of symptoms at diagnosis would be in someone's favour. most of the information I have I have found from reading medical articles I have found from various internet sources and as I work in the health service I can access the medical literature quite easily which is an advantage, but just doing a google search for various topics can often bring up lots of information. You have to be careful though as there can sometimes be lots of claims out there for cures etc that are misleading.
Thought I would just add to attached website - for those of you that haven't already found it. Gives lots of technical info about latest research, articles etc. http://www.brainlife.org/
I, like many of you, researched everything I could about GBM. The consultants don't tend to give you the information - although ours was always ready to answer questions. I think it depends on the area you live, whether temezolomide is given beyond the 6 months. Bob was told he could continue to have it "indefinitely" as long as it was proving to work, and the body could cope with it. Unfortunately it did not work and the subsequent PCV also failed, and we are now just waiting for the inevitable. GBM and brain tumours in general are "rare" and the Cinderella of cancers i.e. don't get a lot of funding, hence so much research doesn't get done. There may well be alternative therapies out there that could have an effect, but no one has the dosh to fund them. Obviously the big phamaceutical companies have a vested interest in keeping the expensive drugs as the leading treatments. Also, as Diane says, you have to watch out for those claiming to have found cures. Realistically I believe that in the future there will be more treatments found to extend the lives - hopefully significantly - of brain tumour patients - but an actual, total cure, is probably a long way off.
Hope you are all doing as well as can be expected, Cure would be a dream come true for all of us, but unfortunetly it does seem a long way off, if they ever do find one. Meantime we will just keep praying and hoping that our loved ones will do well, stay as fit and healthy as possible and enjoy each and every day, and hope that these researsers can can come with even better drugs than we have now.
Hi Diane how is your hubby doing now is he out of hospital yet? Went to see Dr James on monday and he has agreed to put Martin back on temodal thank god, he due to get his first scan since radio finished in about 3 weeks fingers crossed.
Hi Ann how is Bob doing, hopefully still doing well.
Hi Izzy glad to read that your hubby is doing well, has he had his debaulk op yet?
Hi CH hope you and your hubby are doing well over in Holland.
Hi B+ve hope you and your hubby are doing well too.
hi gayle, thanks for the friends invite, had a read of your profile and saw the pics of your husband and your beautiful daughter, she looks very similar to my bethany who is 12 now, but looks just like her. My thoughts are with you, and im trying to come to terms with all this myself, came home tonight, made a lasagne for Josie which she inhaled, had nothing to eat since breakfast, i just wanted her to have something hot inside her as not had much last few days as not felt up to it. Hoping to hear some promising news tomorrow with regard to possible future treatment for her, as she really needs something to pick her up.
HI MY HUSBAND JUST BEEN DIAGNOSED WITH GLIOGLASTMA GRADE IV AND ALSO SPINAL TUMMORS WHICH AS MADE PARALYRIS THE TOLD US BACK IN JULY08 THEIR WAS NO TREAMENT FOR THIS SO I TOOK BACK HOME WERE HE WASNT TO STAY OUR MACMILLIAN NURSE IS WOULDFUL SHE KEEPS TELLING ME PUT HIM IN CARE BUT IS WISH IS TO DIE AT HOME HE NEED 24/7 CARE HE JUST GOOD FIGHTER MAKES WOULD WAY THE LET PEOPLE SUFFER LIKE THIS IF I WAS ANIMAL THE WOULD BUT HIM TO SLEEP I LIVE IN THE NORTH
Hope you Josie and the kids are all well. Hope that you get some good news when you go to the hospital today, what treatment has Josie had so far, how has her health been i see from your profile its been a year since diagnosis. How are you kids coping with their mum being so ill, my little girl seems to be doing ok she knows her daddy is very sick but does not speak very much about it my hubby has had a complete personality change, although now he has changed again and is a bit more like himself, its hard enough for us to understand all this what must it be like for the kids. Take care and let me know how you get on today.
How are you? How are you coping? Do you have family support? I certainly hope so, it must be so awful for you GBM is a horrible nasty disease on its own, without spinal tumours on top of that. How is your husband is he still able to speak to you, does he still have some quality of life i hope so, if you need anyone to speak too i am here take care thinking about you.
Hope you are all as well as you can be, Martin Martine and I are down in Bournmouth for a wee break first few days were great but now Martins headaches have came back he has a very high temp we went to the gp they have put his dex back up blood tests tomorrow i am hoping and praying that it is a bug that he has picked up and not the bloody tumour.
