We Talk Brain Tumours

Helo Beedarsh

What a horrible time you are having. This is a catastrophic diagnosis. I know of no other which takes you to such dark places. You need to focus on being together as a family. We at brainstrust keep abreast of all the latest developments and work very closely with neurosurgeons and neuro-oncologists all over the world to make sure that the patients and carers we support aren't missing anything. Unfortunately Avastin is not the Holy Grail. If anything latest developments with Avastin show that it is eliciting increased invasiveness and that it also enhances spread. Chemo (and yes, TMZ is the best) is the only option at the moment. I promise Beedarsh that if I hear of anything I will be the first to let you know.

Please don't hesitate to contact me if you ever want to chat. I can be with you on this journey. My email is helen@brainstrust.org.uk

Helen x

Dear zoeteen

Glad I can make someone smile in this nightmare that is touching us all. My day yesterday just got worse..someone shut the cat in daughter's bedroom and he had an accident all over Macbeth book, oh and visiting puppy had a wee on my new carpet.

Glad you have a good family, try not to take comments to heart, you are all in this together,

Opal xx

Dear Beedrash

I am so sorry to read your post - I know just how desperate you feel - we to felt that we had to try to beat it despite the odds - thats what gets you through.

If you click on my name you will see our terrible journey with GBM4 and PCV.

In my opinion, PCV gave Steve more time but I do feel that in hind sight, when he got to the 5th cycle, this caused him many many problems.

His blood count never really recovered after that session.

This is such a crual, crual illness, I am sitting here in tears thinking about everyone on here and how many new people join every week.

As Debs says - everyone is more then welcome to join in - its a bit daunting at first because we all know one another but keep posting and you will soon get to know us to.

We still have our driver - Martyn and his lovely wife Doreen - love to you both.

IDOF - I am really sorry to read your news - as Peabs says - take one day at a time and you know we are all here for you.

Take care

Ann x

HELLO ANYONE PLEASE

My husband seems to have lost use in right arm tonight, it seems to be twitching and hand curled, he thinks he has had a stroke but is this just a brain tumour symptom.He refuses to let me call dr. His speech and vision been much worse all day.

Opal

Opal,

Is the arm same or opposite side to tumour?  Is he on steroids?

Hi Opal. My daughter has GBM. Her tumour is right side. Left hand is curled in at rest generally though she can open it. However, during a 'episode' or fit her left hand is tightly curled so even I cannot prise it open. Maybe he is experiencing a fit. I always thought a fit would be general shaking etc but it can also be twitches or involuntary movement or temp paralysis of that affected side. After an hout or two her curling generally got better. Hope this helps

Maggie

Thanks for replies...tumour left parietal lobe, loss of use in right arm. He is on 6mg Dex

Opal

How is hubby now, is he relaxed, is movement returning?

Think mummaggie is right and he is having a sort of fit, makes sense I suppose that it is opposite side to tumour. It is so frightening not knowing what to expect. Thanks for reply.

Opal

Just talk him through it, try and keep relaxed yourself (easy for me to say). if you are agitated it can easily transfer across. Should gradually wear off.  Sorry not much help.  Take care I have to go now and sort Doreen out, but will be thinking off you both XXXX