General cancer discussions

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GBM grade 4 brain tumour , refused anymore treatment

monksy
Posted by
My dad got told he has this condition on the 26 th Jan 2012. He got told he has 3 months left to live . He refused any treatment because it would only prolong his life by a few months , so decided not to go ahead with this and we respect that . I want to know if anyone out there has been in the same position ? With their partner our family members refusing treatment and what to expect ? How fast with this happen without any treatment ?he is only taking steroids now 4 mg at present and it's been 2 weeks since we found out and dad seems know different at all . Any help I would be very grateful to hear off you . Sharon x
catg
Posted by

Hi Sharon. Everyone will tell you the same" Each individual is different and each body reacts to BT and to treatments in different ways"...so it is very difficult to give the answers that you want.

I can tell you that my husband lasted 7 months from diagnosis and I think the extra 4 months was due to the desperate 6 doses of RT he was given. Would he have chosen the same again had he known? I dont think so... his quality of life in those last 4 months was very poor but it did give us time to come to terms and speak about things that we wanted to say. I also dont think that either of us realised that the RT was only to hold the BT at bay for a short while. We had hopes it might improve quality of life and give us more time. You might find that your Dad will last longer than he has been told. Many on this Forum have proved the medics wrong. Enjoy every minute you have and do all the things you want to do together. You will know the changes when they begin to happen...but don't live your life waiting for them.

Love and hugs to your Dad..he has accepted and made the decision that is right for him.

 

Love to all  Cathi x

Araminta
Posted by

Hi Sharon,

Sorry to hear your sad news, how was you're dad diagnosed and what made him go to the doctors initialy?

Its a real shock when you are told the news and obviously there is a lot of confusion and doubt.

My husband aged 60, was told on 2nd Nov., following an MRI scan, that he had a 6cm. tumour on the left frontal lobe(, this was affecting his speech), and that he had two months to live. They said a debulk followed by radiotherapy and chemo would prolong his life by about three months.

He decided that he did'nt want the operation and was sent home on 12mg of steroids daily being reduced by 2mg. a week, we only got down to 6mg and continued on that amount, in fact, I put them up and down as I felt he needed them.

The sreroids made him quite hyper and hungry and he seemed fine. In fact we were glad he didnt have the opp. as that time would have been taken up with treatment.  But that is personel, some people really benefit from having the treatment.

If you want to know any more I will tell you but remember every one is different.

We really benefited from the time we had together and made the most of it. Talk about every thing you need to and let him do what he wants to do , just enjoy the time you have together.

You can send me a private message if you like. Meanwhile take care of yourself.

Minty.

solarized
Posted by

My father 63 (GMB4 right frontal lobe) was diagnosed back at the end of July and given 12mths with treatmen, radio and chemo.

For him it was all about quality of life and he felt the treatment would only prolong things at the expense of his health so he opted not to have chemo or radio, just sterioids and pain relief. Its a decision I entirely respected and would have done the same in his shoes.

He was with us until the beginning of December, which was longer than the 6 weeks we were advised at the end of August.

As Minty said everyone is different.

Chris

 

MaryD
Posted by

I'm so sorry, Monksy. It's a horrible and sudden shock to bear. 

My husband was told he couldn't have any treatment except palliative radiotherapy - he has lung cancer which has already spread to his brain, only diagnosed on 1st January this year. He had one course of radiotherapy which made his symptoms worse - something which can happen -  and suffered seizures which have left him paralysed down his left hand side. He is now on steroids and pain relief only, and the prognosis is unpredictable - so I am concentrating on getting him home so what life remains to him can be as kind and comfortable as possible. Initially chemo was mooted, for the lung tumour, but now he is not fit emough for it - and he was talking of refusing it anyway as even with chemo his life was only reckoned in months.

This article makes interesting reading (you may have to copy and paste the link into your browser, as I can't seem to get links to work in these posts)

http://www.guardian.co.uk/society/2012/feb/08/how-doctors-choose-die?INTCMP=SRCH

It is written by a US doctor, but the case he makes seems relevant.  I hope it helps and wish you and your dad every good thought.

 

Mary xx

 

 

MaryD

catg
Posted by

Forgot to say Sharon.....go to WTBT forum(we talk brain tumours) thats where we all live, and you will find lots of help and support there.

love Cathi x

Pam123
Posted by

WTBT Forum great. Full of lovely people. Difficult to find first time though:

You will find it at:

Community home > Groups > Cancer Experiences > General Cancer Discussions > We Talk Brain Tumours

See you there.

Pam

x

anit
Posted by

Hi Minty

Just read your message and i was drawn to replying to you because my dad was diagnosed with grade 4 glioblastoma on 30th Sept and told he has 3 months left.  He has a tumor on his frontal lobe, which is 7 cm in size.  Today, is 7th November and my dad's personality is changing, which is very sad to see and my mum is receiving this now on a daily basis.  All our family were very shocked and confused when we received this news about my dad and were given no information and advice on how this tumor will affect my dad and what his symptoms were going to be as time has gone on.  There is no treatment for my dad only steroids, the consultant won't operate on him because of his age and they didn't even offer chemo or radiotherapy.  Its so hard to see my dad go through this and to see his personality changing.  Would be grateful for any advice that you can give me on what to expect as time goes by.

Thanks

Anit

B.A
Posted by

Hello Anit,

I was looking for information and came across your post respinding to Minty.


I wanted to ask how your dad is doing? My mom was diagnosed with frontal lobe glioblastoma on Oct 2016. She went through 3 weeks of radiation and chemo (pill temodar) followed by 1 pill a month until a recurrence of radiation induced necrosis in Sept 2017. She was put on Aviston but as of Feb2017 a mass has returned in the frontal gyrus (behind the eyes) and neurologist is talking about surgery and clinical studies.


Radiation necrosis has changed my mother into a different person and i dont think she should have another surgery, the initial biopsy was hard on her and the rounds of radiation and chemo...so I’m wondering what might happen to her if we decide to no more treatments.


Barleysugar
Posted by

In 2016 my husband had a melanoma removed from his back and, we thought that was the end of that little problem. What we didn’t expect was that this would metastasis and spread to his brain, lungs, liver and spleen!

The brain is the main problem, the tumour is growing at an alarming rate and the oedema on the brain is getting worse causing difficulty in him speaking and moving. There is no treatment available and the specialist put him on steroids to reduce the swelling but only gave him a few months to live. These steroids worked for a while but are now having less effect.

During the night he had his first seizure and it was horrible, today is our 50th wedding anniversary and I would love to have my husband back just for one day. I hate watching him slip away bit by bit.

Josh1992
Posted by

Hello I'm new to this site and I would like to extend my warmest and most sincere apologies what your going through. My father was diagnosed with glioblastoma on Feb of 2017 and he started having trouble walking and his three month mri appointment wasn't due for not her two weeks so we took him to earlier then expected and the doctors told us the cancer is back and is everywhere. Hes slowly losing himself. And I ponder the thought if I could trade his life for mine and let me carry the burden of what's  known as glioblastoma grade 4. I hope all works out okay for you I pray for both of us.