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 am new to this. My boyfriend was diagnosed with GBM Grade 4 on the left temporal lobe on sept 11th. He finished six weeks of treatment on November 7th. He was getting bad headaches and very confused, also dragging his right leg. So we called his Dr and he wanted him to go in. I took him on Tuesday of this week and they did a MRI, on Wednesday we got the news that his tumor jumped over to the right side and that he had to make a decision on what he wants to do next. He decideded to do nothing and enjoy the rest of his days. Before this happened he was a very active man, never ever sick, now its like night and day. He has good days and bad. His left eye has had some drainage and he developed a rash from his dilantin, so they are switching that and they gave him an eye drop. It was our 7 month anniversary when we got the news, we cried and laughed and came to terms with this awful tumor. I never ever had to deal with this sort of cancer. I have had other relatives with cancer, but never this sort. I have never done so much research in my life. The Dr gave him till the end of the year, he says it could be sooner or later. I have so may mixed feeling about all this, but I am there for him, no matter what. My friend gave me a book to read, it is written by hospice nurses and is very good, if anyone wants to know the name of it you can email me. I found that the information in it to be very comforting and it helps you understand what they may going thru. He is doing very well right now. He has three boys and a granddaughter, he wants to spend as much time as he can with all of them. I have five children and five granddaughters, all who have grown to love him very much, he tells them all the time that he considers them all his children. He such a joy to be around, never ever gives up!! We know its going to be tough, but what can you do, you feel so helpless. Why is there no cure, will they ever find one?? I feel what everyone on this tag is going thru, and sometimes you feel like your the only one, but know that your not, we all need to lean on each other for support. Thanks for being here!! Cheryl
Hi Cheryl, I saw your post and thought I would welcome? you to the site. I actually post on the "We Talk Brain Tumours" thread, but occasionally have a nosey in here. My wife also has her tumour in her left temporal, but thankfully it is only! a grade 3. A prognosis is an educated guess and everyone seems to react differently, we were diagnosed in January 2003 and "up to 2 years" was the guide! You seem to be dealing with the situation extremely well, in a very creditable manner. If you want another source of information. you may care to click on; http://www.brainhospice.com/ Look at Symptom Timeline on the right of the page, but it does tell it how it is! Best wishes to both of you, Martyn XX
Sorry that you have had to join this site, it is very difficult to deal with this whole situation, my husband Martin was diagnosed with GBM on june of this year, he has had the debaulk 6 weeks of chemo and radio therapy and now he is on the 5 days out of 28 on temodal, he had his first scan last friday since the treatment started we anxiosly await the results we get the on tuesday i am finding it very difficult just now i am scared to get the results but know that we have too. My husband sleeps lots and gets some headaches especially when he is outside and he gets confused too, i hate this cancer, its so evil. Like you i keep hoping and praying for a cure for this nasty thing, but i think they will one day but who knows when, hopefully in time to save our loved ones? Hope you and your boyfriend are doing as well as you can be.
Sorry to hear about your boyfriend, my dad was diagnosed with GBM (inoperable) in August of this year. When my dad was first diagnosed i spent many sleepless nights scouring the internet for information which helped me see the reality of it all but scared me witless. I do try and live for today but the fear of whats going to happen and when, is constantly on my mind. Its an evil evil disease which is so unfair in how it can rob good people of their future. Hope your ok.
Gayle - I saw the programme on Avastin - was really quite interesting. Im sure too that its a drug that is now pretty much routinely used in America to treat bt's. It amazes me how much these drugs actually cost - cant quite get my head around that. Good luck for tuesday - positive thoughts sent to you both.
Izzy - Hope your managed to get some control of your hubby's sickness.
Henrietta - I seen your post about someone called Chrissy who's hubby has gbm - I dont know how to find it but I do hope she's managed to find a thread and get some help if she's posted twice - wouldnt like to think she's thinks she's all alone (if you know what i mean!).
Thats my dad just finished his RT - he seems a wee bit low - think he quite liked the routine of getting up and dressed and felt like he was doing something positive in battling the "thing".
Glad your dad has finished his treatment, for a few weeks after martin finished his treatment he was running about all over the place excess energy but after a couple of weeks his energy drained and he rested much more, now he is sleeping for scotland, hopefully the healing process, still very nervous about tuesday, hope you and your family are well.
Very cold morning again yuck. My hubby has only one more week of treatment left chemo and radio combined, i think we weill miss going to the hospital everyday did all you guys miss it?? What happens after this week do we still continue to go to the hospital on a weekly basis or is it more often? I am unsure we have not been told very much at all our consultant and staff do not tell me very much at all if it wasnt for you guys i would know nothing. Hope you are all doing fine.
HI Izzy Usually after the six week radio/chemo you have a break of 4 weeks or so, then start on further chemotherapy, usually temozolomide fo r5 days out of each month, for 6 months. that seems to be the standard treatment unless there is any medical reason for it to be different in your case. regarding missing the hospital visits, yes I think we did a bit as at least when attending there it felt as if something was being done to fight the tumour, but we were also relieved to have all the travelling finished. We were told the radiotherapy keeps doing its job for weeks after treatment finishes, and your hubby might still get quite tired for a while yet. It can also cause swelling of the brain and thus symptoms that are similar to those caused by the tumour - if that happens the docs will probably increase his steroid dose. I think that the hospital staff often don't give a great deal of information so next time you go, go with a list of questions and don't leave till you have them answered! If you have a nurse specialist it mihgt be possible to arrange to see him or her during this last week of treatment, then you could get more info about what happens next.
HI Cheryl, welcome to the site, sounds like you have your hands full but you are doing a great job. Sorry you have to find yourslef here.
HI Gayle, good luck for tomorrow, fingers crossed for you - will be thinking of you
Thanks again for your kind wishes for tomorrow, i am so frightened about it, like you said going to the beatson was ok felt like we were actively fighting the tumour the southern general scared me because we were given the diagnosis there and the ops as well. But tomorrow i dread going to the beatson i hope and pray that things will be okay, i dont think i'll sleep tonight. Martin has slept all day and hardly eaten a thing 2 wheetabix and half a banana, does your hubby have times like this.
HI Gayle I know the chemo can cause tiredness. also yo can still get a lot of swelling in the brain even some months after radiotherapy. Extreme tiredness and being off food might be a sign he needs a bigger steroid dose -I'd make sure the doctor you see tomorrow knows just how sleepy he's been, and I think you said before martin had ben confused - they need to know that as well - see what they say. again, good luck, hope you don't have to wait too long once you get there.
Martin has been on only 1mg of striods for 2 months now, i put it down to 1/2mg as i was told to do at the beatson, but when i did he was having slight headaches especially if he was outside, prof rampling told me 2 weeks ago on the telephone this can becommon after surgery they call it icreamhead a bit strange but?? I am so scared this bloody thing is growing again already but if it was surely Martin would be having severe headaches. Hopefully not too long a wait tomorrow but every second will feel like an hour.
