We Talk Brain Tumours

Hi Debs

My husband was diagnosed with an AO in May 2004, and had two lots of surgery and radiotherapy. No prognosis was given at the time, but we were told the unit had patients who had lived for an extended period of time.

Good luck for Friday - will be thinking of you

Wow, that's inspired me Felix thank you and I think what the hospital told your husband is much better than being given a time frame, as that prognosis clock sometimes ticks very loudly in my head!  However, I am a very positive person and know that I am not a statistic and there are many more people I have yet to meet and annoy

Please feel free to add me as a friend, there aren't many of us with the same tumour type on here  - thankfully

Not sure how to start new post but apologies for getting it wrong.

Has anyone heard of Salvestrol?]

Opal

Good luck on Friday! Will be thinking of you.

My husband has his next scan on March 10th results on March 18th. It will have been 6 months since his last scan. Although my husband's tumour has been graded a grade 4 it is 'an infiltrating high grade mixed glioma with a significant oligodenogical component.' It was removed November 2009 and was a right occipital tumour.

Anyone know of anyone else with something similar?

Hello all. Hope you are all doing as well as can be expected.

I haven't been around on here for a while. It's been a difficult few weeks with dad. He's gone downhill quite rapidly and I've just been feeling too sad/angry to think straight.

Dad completed his second course of five day chemo (he promised to try it for at least one month) and then decided not to have any more. I fully support his decision. He declines so much whilst undergoing chemo and completely loses his appetite (something he can ill afford to do as he has already lost too much weight) and he's too weak to recover fully in between cycles. We met with his hospice doctor today and she answered so many of our (unspoken, even between ourselves) questions.

Dad is stumbling a lot now and is very unsteady. His steroid dose has been doubled in case it's due to swelling rather than tumour progression. He struggles to speak properly even though in his head, he knows exactly what he wants to say. He suffers constant nausea and also some extremely unpleasant side effects from the steroids that I wouldn't put on here to protect his dignity. He is now on 500g Phentonyn to try and ease his fits.

He remains my hero. I tell him at every opportunity how proud I am of him. He's the strongest person I know and also the most dignified. I'm in awe of him.

Glioblastoma - I ******* hate you.

Big hugs to you Deli, I know there are others who have been through the part of the journey you and your dad have reached and will hopefully have some better words of wisdom.

How often does he take the 500g of Phenytoin (I take 400g of Tegratol in the morning - allergic to Phenytoin -and have only ever had the one seizure that got me diagnosed back in Nov 2008) so I maybe wrong but that's not a huge amount, unless it's several times a day.

However I do agree with your last statement most wholeheartedly although I would extend it to all brain tumours.....they all suck!

Hi deli, my god do i know how you feel. My mum has also gone quite rapidly downhill, she was admitted to hospital last wk with seizures which we thought was due to progression of a second tumour. However after a ct they said there was no significant change. They are also treating for multiple infections and her condition has now improved greatly as she was unresponsive and lost all mobility at first but is now chatting away and feeding herself etc. I just wish we had more answers, i hate the limbo almost as much as the disease! Anyway, sending love and hugs too everyone effected by this awful disease Xx

Hi Everybody, and Deli your current state is so similar to ours . We went for follow up appt to get first chemo round after having the 6wks of chemo/radiotherapy 6 wks ago,Stewarts steroids were getting gradually decreased by 2mg at 2 wk intervals during this time but seizures were gradually increasing with this and 2 increases in anti convulsant meds ( hes on phenytoin 300mg at night and now Keppra 1000mg twice a day ) made no difference, so by the Sunday prior to appointment his seizures had peaked along with all the complications that go with them. I had to call GP on call who had to administer a sedative. By coincidence a hospital bed had been delivered that day for a "just in case" he couldn't make stairs time, so we had to use it that night. Anyway we weren't well enough for the chemo and his steroids were doubled up to help seizures, have abated now and to return next wk for poss chemo which they say isn't that important. They'll not know if the seizures are being caused by the treatment or this horrible disease. Looking at the "timeline" link that someone put us on to it would appear that he hasn't got long, but surely this could be side effects also??

Love to all

Hazel xxxxx

Hello Hazel

What is the timeline link? So sorry to read the problems you are having. We have never had seizures but GP has given us Diazepam Rectal tubes just in case needed.

Opal

Opal - there is a website called www.brainhospice.com which has a symptom timeline on it. Beware - it's graphic and I do not advise reading it unless you are feeling strong enough, if you get what I mean. I dip in and out of it, sometimes I can only read one line and it's too much.x