We Talk Brain Tumours

Hi This is the first time that I'm using this site, so forgive me if I don't do it properly! My dad was recently diagnosed woth a G4 brain tumour. He's just coming to the end of his 6 week radiotherapy and chemotherapy treatment (this is his hast week) and is feeling extremely ill, weak and tired. He refuses to eat, or drink very much and is accusing my mum of making things taste bad. His personality has changed and he can be really nasty with my mum, and as a result it's very difficult to reason with him and explain how ill he will make himself if he continues.The dr has said to hang in there as there is only another 5 treatments to go and he'll start to feel better. My concern is that he'll just begin to feel a little better and he'll be hit again with the next cycle of his treatment, which is 5 days of chemotherapy, 23 days off. he'll have this over 6 months. Does anyone know how strong the chemotherapy will be? Is it the same dosage that he's taking now? How did you cope? Has anyone else had the same problem with mood swings and nastiness? If so what did you do about it? Did you take any medication and was it successful? Did the mood swings improve once the chemo etc was completed? Any help or advice will be gratefully received.

Hello Jobyone, I'm sorry to read of another bt diagnosis. In the circumstances, this is a good place to write and you will get lots of support.

You don't say where your Dad's tumour is but the position of the tumour can be a major cause of  changing moods - more so than the chemotherapy I think Specifically the frontal lobes are associated with these changes.
The radiotherapy he has received is a very strong treatment and is still working and will continue to do so for many months.
Normally the chemotherapy dose he will have after the combined treatment will be higher than what he has had before - it is very individual and dependent on how you Dad is and based generally on your Dad's weight and height.
If he is taking steroids for any swelling it would not be unusual that  the steroids may be affecting his moods as well.
All this in addition to coping with suddenly being diagnosed with such a serious illness and all that means.

This doesn't make it any easier for you and your Mum to cope with though. A lot of people who write here have experience with what you are dealing with but it is caused by the illness, it is not your Dad who is behaving like this.
It's very very hard to cope with. Keep on writing here Jobyone. There is a wealth of experience and support.  Maybe read back through older posts and bit and some profiles to give you some extra information.
Best wishes,
CH

Hi Jobyone

I am pleased that my advice helped a bit.

With regards to your Dad only being hurtful to your Mum, as the saying goes - you always hurt the one you love.

I know that it must be very upsetting for you both but perhaps if you gain more info about why it is happening then hopefully this will clarify things for you.

It's an awful condition with many many emotions and sadly, it doesn't get any easier.  I still cry most days and feel anxious about the unknown and what the future holds.  I though splitting up with a boyfriend years ago was heart breaking but that was nothing compared to this.

Perhaps you could ask the Macmillan Nurse to come to the house to chat with all of you.  Our Macmillan Nurse comes when ever we want her to but always once a month.

Perhaps she (assuming it is  a lady) could speak separately with you all so that you can discuss your anxieties and perhaps thay can get through to your Dad about eating a bit more.

My Husband was on Temozolide (double dose) after radio with chemo and he didn't like the side effects + the dosage and his scan said that his tumour had grown.

He then changed to PCV chemo and touch wood, he has been alot better on this one.

Take care will be thinking about you all

Ann x

Hi everyone. Huge appologies as I havent been able to reply to any posts for a while. had so much stuff going on.

Still no new news on dad, except he is a little easier to understand on the phone. tho i still occassionally guess what he has said.

Great gran died on thursday, she was 100 and a very big part of my life. i havent cried yet but im still in shock i think. the funeral is not until 4th may so waiting a while. unsure what exactly she died of as so much was oing on, but it prob was kidney failure and her refusing treatment as she just wanted to go.

extremely happy that it was peaceful for her but upset by the fact that i called the hospital to see how she was only to be told she ad just passed away. i was the first person to know, apart from uncle and aunt that were there at the time. it feels odd knowing I phoned then as i havent phoned in over 2weeks as the hospital told me not to.on the plus side she is out of pain and when i go to funeral in chelt i can see my dad and put some fears at rest.

anyways sorry im babbling on.

hope all of you are doing ok and your partners and children are doing well too.

Peabs how is the CRUK email going, any joy yet. i cant beleive what i was reading.

huge hugs to everyone and chat soon xxx fi in (not so sunny) cornwall

FJC, still haven't had a reply yet!!

Love to you all

PEABS XXX

Hi all.

My eldest daughter is doing a Ben Nevis climb for BT research and raising profile.

More info at www.justgiving.com/amymariebutler

With love.

PEABS

OH yes, big congratulations to Martin on his rowing marathon and the amount of monies raised. WELL DONE

XXXXXX

my son as gbm 4. im not good with words.would like to ask if any one as experienced a violent fit.my son had one last tuesday.

Hello, I haven't visited the site for some months but wanted to see how everyone was getting on as it was such a support to me when my dad was fighting this awful disease, I sadly have been on the journey and can associate with so many of what is written on the site. I hope you all stay strong and don't focus too much on what might happen try to make the most of each day as I found this to be an invaluable piece of information which I got from someone on the site at a time when I was  questioning how long I had left with my dad and whether he should know the bleak prognosis we were given, we chose not to tell him to give him hope although deep down I'm sure he knew, he put a brave front on for my mum and I  and looking back I was so proud of how he dealt with it. I am now at a stage were I feel I should do a little to help whether that being a marathon with a big loud t-shirt with my dad's name who knows all I know is I miss my dad and am sad that there was so little that could be done to help my dad, we should have made better progress in this day and age. Wishing you all strength and best wishes.

Juliex    

Jo, welcome to the site and sorry you haven't had a reply yet but many of the people who post here on a regular basis are very much pre-occupied at the moment dealing with difficulties and sadness of their own. Very sorry to read that your son has GBM. I am only too well acquainted with this cruel condition as my husband has been fighting it for 2 years. I can't help you with advice about fits as up to now, Paul, my husband hasn't had any fits or seizures. I think it is true to say that the likelihood of fits does depend very much on where the tumour is situated and I have heard of some GBM patients who never experience fits at any stage in the illness. My husband's (first) tumour is in the basal ganglia, deep inside the brain. I am sure it must be very distressing for all concerned when the person you love has a fit. I hope you or your son have been able to ask his medical team or GP about how to cope with them. I know there are some basic guidelines to follow and if it would help, I will find a post I saved about how to deal with seizures. If the fitting becomes a regular occurrence, I am sure that the doctors will prescribe drugs to control it. Don't, whatever you do, be afraid to ask for help. GBM is difficult enought to cope with. Sadly there is no cure but problems such as seizures can certainly be controlled. Do keep coming to the site. You will find lots of support and advice and a friendly ear.

Best wishes,

(and love to everyone else)

Oops, I meant to address my post to Mo. not Jo!

Apologies.