We Talk Brain Tumours

Hi Debbie

Without reading what has been said before I apologise for saying it again if already mentioned.

1-2mg a day is not much to be taking in my experience - the steroid is to reduce the pressure which is probably why your Dad's headaches have come back.

In our case, it was trying to get the balance between the side effects caused by the steroid to the benefits they give.

We could also speak to our oncologist inbetween appointments when in doubt and he would always call us back.

He also left us to decide how much to take provided we followed his guidelines.

The minimum Steve took was 4mg a day because my husband's tumour was cystic i.e. 'spongy'  and caused more pressure on the brain and he risked seizure but he never had a headache.

The maximum he took towards the end was 12mg.

We were also told to take them early in the day because they can cause sleep disturbance.

Hope this helps a bit

Take care

Ann x

Well done Debs - good on yeh!  Keep smiling (this is what Steve would have said)

Take care

Lol Ann x

Martyn & Doreen

Sending you both my thoughts and love

Take care

Ann x

Dear All, hoping to get a bit of advice please.  Rob appears to be deteriorating rapidly, nodding off when people are talking to him, getting confused and agitated (he tried to eat his aftershave gel this morning) and trying to walk around the house but not really knowing why or what he wants.  Our Macmillan nurse has said that this could be a sign of tumour progression (despite the 6 weeks radiotherapy) and raised pressure.  I am still trying to be positive so could this also be "somnolence syndrome" and still be the effects of the radiotherapy which he finished nearly 7 weeks ago.  He has not started chemo yet and is on 8mg Dex per day and 600mg Tegretol.  He also had his first major seizure earlier this week.  It is difficult to know how he feels in himself as he has lost all of his speech now.  Many thanks for any help you can offer.  Best wishes to everyone on this site x

Hello, I have sent you a pm. xx

Hi Dianne,

thanks for your words of support, Ithink he is scared at the moment, not sleeping and just not quite believing this is happening to him. Ring him daily, giving him lots of support, he is based in tidworth and his commanding officer is being a real gem. i just want to hold him close and make it all go away. I know its not rational but i know i felt like that when i first was told i had cancer. I do believe he takes comfort from the fact I and my sister have beaten the cancer. Well we still both around I,m seven years and she is 20 years. I have this strong feeeling its not his time yet and its not a feeling i can push away as it is so strong, so i take comfort from that. He as the begining of his journey and i sure there will be times when he will get down because i still do. but i am grateful for everyday i am around to see my grandchildrens smiles and their tears. Life throws us some crap but we don,t have to take it lying down.

Thanks for your kind words  Sue xxxx

Hi Jenny

Not sure that I can help you much as our journey was different to yours.

Steve had chemo tablets with his radio and then chemo on its own.

I would suggest that you call your Oncologist via his secreatary and ask for him to call you back (stress that it is urgent).  Our's always called us in between appointments.

It's important to tell him about the seizures as Rob may need medication for it.

I found it easier to write the q's down so that you make the most of the call when you speak to oncologist.

Hope this helps a bit

Take care

Ann

Hi Ann, 

Thanks for your reply - 1mg really isn't a lot, is it, if it's going to keep dad on an even keel. 

I've read your profile by the way, and just wanted to say your hubby was obviously a lovely man.  You're doing him proud, helping others in the same situation on here.

I'll definitely be asking mam and dad to ring the oncologist/oncology nurse on Monday.

Thanks again,

Debbie xx

Hello I haven't posted really since my mum passed away but I occasionally have a read here and my heart goes out to everyone affected in any way by a brain tumour.

Life has been very hard since mum died, it's been a year now and we all miss her so badly. 

My dad has been very ill since she passed, his grief has caused him to have a severe eating disorder, similar to anorexia, he hasn't eaten any food whatsoever for 9 months, has lost 5 stone and survives on special milkshake drinks which give him 600 calories a day.  I went from caring for my mum to being a carer for him, he can hardly walk now due to being so thin and fragile.  Glioblastoma has changed our family into something unrecognisable compared to how it was a couple of years ago. I hope to god that a cure is found one day.

I do try and read about the latest news and treatments for GBM and today have found the following interesting snippet of information. 

"Researchers have found that brain cancer cells can turn themselves into blood vessel cells to counter drugs designed to cut off a tumor's blood supply and deprive it of oxygen and nutrients.

This ensures an adequate oxygen supply, according to the researchers, and it helps explain why glioblastoma, the most common and deadly form of brain cancer, resists nearly all treatment efforts".

http://www.businessweek.com/lifestyle/content/healthday/649285.html

Lots of love to everyone here, don't ever give up.

Feex