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.
Thats very interesting what you say about the radiotherapy working for up to 3 months is that right enough that sounds very good that s something positive!!!! My husband has 9 more sessions of radio chemo to get, will his steriods reduce then?? Do you think that they might come up with a cure for this horrible disease soon ????
Hi Izzy, Well they say it can work for up to 3 months - thats why they dont (normally) scan before then as it can still be doing its job. Obviously people respond differently though.
I can only speak for my dad but his steroids have been being reduced throughout the RT - he was initially on 12mg but as i say he is now on 5mg which I think is ok. If symptoms start coming back I think they would have to be put up again.
If they found a cure for his illness soon I would be the happiest person alive - well, me you and everyone else on this site!! I dont think there is enough money funded into brain tumors, as there is with other cancers - they say GBM's are "rare" but doesnt seem that way to me.
hope your hubby's ok - just off to get my daughter from nursery. lesley xxx
We were told that RT can continue to have effects up to 6 months afterwards but I'm sure it varies person to person. Certainly related tiredness seemed to last that long. In fact it was that thought, that RT continued to work 'silently' that gave me something active to hold on to during that difficult time when B had finished RT and the 5/28 tmz days. B was very happy to finish treatment, I found it very hard.
B, normally a male double for Twiggy (unlike me!) also gained weight when taking dexamethason (sp?) especially on his cheeks and tum. He was only on it for about 3 weeks around diagnosis but I saw it as my mission in life to feed him up when he was taking tmz so that probably contributed. Â He has almost lost it all now, he managed to put himself on a diet - something totally alien to me!
Hi all, I have to agree with CH. We were warned that the R/T effects can last for up to 6 months and in Doreen's case I think they did. Her balance and vision were quite badly affected during and immediately post R/T, but gradually improved afterwards. She also became quite toxic, her eyes almost glowed! whether this was due to R/T or not I don't know, as she was changed from phenytoin to epilim which brought about a noticable improvement. Martyn XXXX
My husband Martin has been very tired this last month his radiotherapy finished early september he is so much more sleepy now than when he was going through the radio, it was as if the radio was giving him energy, he wanted to go out every night of the week, he isnow on the 6 month of high dose temodal, we awaiting the result of his first scan since the debaulk, and it makes me sick when i thinkabout it.
Martin put on lots of weight also because of the dex, put now he is only on 1/2mg a day his appetite has reduced dramatically, but he has now developed diabetes again because of the dex. The treatment affects everyone in so many different ways.
I'm struggling to understandthe logic of this 'standard' treatment for GBM. My dad has finished his 6th high dose TMZ but an emergency meeting with his consultant has resulted in 2 further cycles until we can sort out what's happening. As I understand it, treatment following RT and the 6 cycles is to wait until 'reoccurance'. How can something reoccur if it hasn't ever gone in the first place. Is this just semantics? Do some people have their tumour completely removed, have the standard treatment, show by MRI after that there is nothing left and then receive treatment on reoccurance? Is a 'debulk' what I think it is i.e. taking as much as possible away, but not all? My dad only had a biopsy so my argument with the consultant is that it is, and always will be there, so continued treatment is necessary to keep it at bay as long as possible. Even if only a little bit is left, if treatment is stopped, surely it is just a matter of time before it comes back - this is an aggressive tumour and while the blood vessels supplying it respond well to chemo, they quickly recover when it is stopped - so why is it stopped? My dad is due for MRI on 1 December - even if the results are as good as they could be i.e. tumour much smaller, it makes no sense to stop the treatment because we know it will start to grow again. We were led to believe that following the 6 cycles and MRI no treatment would be given until more symptoms show indicating that it is growing again. One consultant our GP has spoken to on our behalf can see the logic of not stopping (and agrees that there is evidence to support this) but is restricted as to what he can offer because of the agreed 'standard' treatment and NICE guidelines and PCT funding. He therefore regularly MRIs his patients in the hope of seeing growth before symptoms so that treatment can start again. How often do people who have received the standard treatment have MRI scans once they have stopped?
Sorry to go on and on but this gets me really frustrated. Best wishes to all.
I totally agree with everything that you are saying, why stop giving the temodal if it is working and the patient is well enough to keep having more, it is obvious to us all that when the chemo stops the bloody thing will start to grow again, how can NICE put a price on someones life, in my opinion they should carry on until it stops working or the patient is too unwell to have anymore.
Debaulk does mean to remove as much of the tumour as possible, with little or no damage to healthy brain tissue, i have read that in some occasions that all the tumour can be removed this is called total reset, but according to statistics it will almost certainly grow back.
In my opinion there is not alot of public awareness of brain tumours simply because its not a common thing, i certainly dont agree with that, people who say this should come on here and read this would certainly change their minds, i heard that there was a week in october that was national brain tumour awareness week, i dont know about you but i never saw anything on tv,billboards etc did you?
Hi Just had social services in they have fitted a bath and toilet aid as Martin has been struggling lately getting in and out of the bath and he finds it difficult to stand in the shower for any length of time hopefully this will help him. I was very emotional after this was done its just another reminder of how ill my darling is, its hard to believe this is really happening this time last year Martin was a fit and healthy guy now this thing has taken over.
You may already have found this but if not, here is a link to a study that is in phase II of research comparing 6 month tmz with continuous tmz. I think the problem is there have been no clinical trail proof. I also think that 6 months tmz is the standard because that is what was researched.
I'm not certain if recurrence happens because it's not possible to remove every single cell of the tumour (I think that is always the case) or if also the conditions that gave rise to the tumour in the first place are still present. I think it is the first option as I believe most regrowth is in the same place - or close to the site of the original tumour.
hi gayle - we too have the bath aids and toilet seats, they are in fact extremely useful, but I know what you mean it does kin of turn your home into a hospital! hi B+ve. I'm sure your frustration at what appears to be lack of treatment comes from the fact that although you are right, it seems common sense to continue a treatment that is working, there is just no current research evidence to back this up, the research is no doubt being done somewhere ( I hope!) but right now there is no evidence, and the docs are expected to practice so called "evidence based medicine", also when there is no evidence it is much less likely that new ( expensive)treatments will be funded. sady it is reality that when someone has a debulking operation they can never remove all of the tumour apart from when the tumour is low grade ( grade 1) as it tends to extend into the brain, so some is always left behind. the assault with max doses of radiotherpay is supposed to kill off as many of these remaining cells as possible and chemo complements this by stopping growth of the faster growing cells. The reason they do this "wait and see" after that seems to be a general feeling that the body needs a rest and the patient needs to be allowed some quality time whilst it is possible as the treatments generally cause tiredness and sickness at the very least. this is based on the assumption that the tumour will return and that quality of life during this period is as important as attempting to prolong life with toxic treatments that may or may not be effective. some people do infact do very well off treatment for considerable periods of time as you may have read on the brain tumour thread. There is one lady I have heard of who attends our clinic who has lived with GBM for 8 years! but that is very much the exception. so it is a very difficult choice to make. What does your dad think about it all? take care diane xx
