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.
hi Gayle, don't worry, they will be able to tell you from the scan if there is a lot of swelling and will advise about the steroids, try not to imagine the worst, it could all be just due to the radiotherapy /chemo - I hope so
Hi Diane i know that you are right the results will be good i am off to try and get a few hours sleep speak to you tomorrow thanks again. Goodnight Gayle xx
hello my husband,michael ,died on sunday morning.it was very sudden.although he had been in the hospice for a while he was actually coming home.meant to get bath rails etc fitted yesterday.staff in hospice even shocked.can't believe he's gone! lesley kb ps i will be thinking about you today gayle all my love xxx
Hi Lesley, so sorry Michael has passed away so suddenly. You have battled this for such a long time now, Michael is finally at peace, my thoughts go out to you and your family xxxxxxx
So sorry to hear about your beloved Michael, Hope you and the children are as well as can be expected, thinking about you all. xx
Hi everybody else
I am so worried and scared about today, but at least now it is here and only a few hours to wait i am hoping and praying that everything will be okay today.
My wife has a GBM4 (diagnosed mid July 2008), and has had one course of radiotherapy and Temozolomide combined treatment over 6 weeks. The chemo shot her bone marrow causing her platelet count to drop to 9 (normally in the mid hundreds), but the fact the chemo nearly killed her means they cannot give any more down the line.
Can anyone help with some advice? She is on steroids (Dexamethasone) to reduce the swelling, gradually reducing the dose as the tumour has shrunk after being battered by the treatment. The problem is she has none of the euphoria other people have with this drug and she is very tired and lacking energy, mainly I suspect because the drug has wasted all her muscles.
Does anyone have any experience of an exercise regime building the patient up? I am currently researching for a personal trainer to visit her at home in the hope this will do some good.
We were led to believe that there would be a period of 'normality' post treatment, but this is yet to materialise, as she is far from back to normal.
Having lost my mother to Alzheimer's over an 11 year period, I am very aware of similar symptoms in my wife and although we were led to believe these were temporary and would recede post treatment, this is not actually happening.
Am I being too impatient????? Does all this happen, but in more time?
Sorry there are so many questions, but i eally would appreciate any comments at all.
Hello Lesley kb, sorry to hear of Micheal's passing. You both fought for a long time and I hope you can find some peace, despite the shock. take care xxx
Me again, just saw your post about the steroid dose.
My wife started on 16mg when diagnosed July 2008. It has gradually been reduced, but even now she is still on 5.5mg/day. We reduce 0.5mg every 5 days at present. No ill effects from these reductions, but it is still a very high dose compared to your partner's.
Last scan was mid October, tumour had diminished, next one mid December.
What does anyone know about life expectancy? My wife keeps asking every doctor she sees. Nobody will give much away, it really does seem a lottery, but information we have been given is that untreated these little monsters do their worst in as little as 3 months and treatment buys up to 18 months.
Any views on this?
Does anyone have any advice on the later stages, care required, is home help needed, will she need to go into a hospice? My wife is 50 and the 'children' are 17 and 21, I would like to have some advice so I can at least be mentally prepared for what could happen.
