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Original poster

Glioblastoma grade 4 :( experiences?

18 replies

QueenOfTheMadhouse · 04/09/2011 17:51

Hi, my dad got diagnosed with gbm 4 last sat after a week of confusion, it is unoperable.He is having 8-15 days of radiotherapy to try and control the tumour. While i was with him to get the diagnosis they asked dad if he wanted to know how long he had or what to expect but he said no, however my sisters and i would like to know as we are going to be caring for him and are all single parents,i have 3 children, the youngest being 3 months. My sisters both have babies too. My dad is adamant he doesn't want hospice care. Does anyone have any experiences with this cancer, and also does anyone have any idea as to what to expect? TIA.

OP posts:

Elibean · 04/09/2011 19:02

No experience, but am really sorry

Bumping for you.

cassidee · 04/09/2011 19:10

Sorry to hear this. My dad had a different cancer, but I found the cancer helpline, which is now run by Macmillan, was really good for info. At some points I was ringing them everyday, discussing precise symptoms and they gave me tons of really useful info. It was Cancer Backup then, but is now Macmillan.

AngryFeet · 04/09/2011 19:17

Some info here

Very sorry :(

CMOTdibbler · 04/09/2011 19:38

I'm very, very sorry to hear this.

Unfortunatly, GBM is incredibly aggressive, and very few people survive to a year after diagnosis. Your dad should be referred to the palliative care team, and they will help you and the family make decisions about how he can be cared for in the time ahead. There are services such as Marie Curie nurses, hospice at home etc, as well as day hospice.

l4k · 05/09/2011 07:47

I do have experience of this but I'm not sure you will want to hear it.My fil was diagnosed with inoperable GBM 4 early june and had previously been very fit and well .he had 4 weeks of radiotherapy but it didnt work and we lost him on weds just gone, he was 68.I am so sorry for your family.
If you would like any more details let me know.
I wish I had something more hopeful to tell you.
So sorry.

pinkytheshrinky · 05/09/2011 07:52

Oh this is such a frightening time for you all - love from my family to yours x

Thumbwitch · 05/09/2011 07:56

So very sorry to read this - I have no relevant experience but wanted to offer sympathy. The only mild "comfort" (and it's pretty cold) is that it's probably kinder for your Dad if it's quick.

Confusion and loss of balance seem to be common factors, fits may occur, plus headaches. Loss of motor control may happen as well. It's an evil thing to have and I hope you get some help - have the MacMillan nurses been in contact?

Thumbwitch · 05/09/2011 07:56

14k - condolences to you and your family as well. :(

bedheadz · 05/09/2011 08:24

So sorry to read this - re: hospice care, i work in a hospice. It as lovely as a hospice can be with really good facilities. The quality of care is excellent. Family are encouraged to visit and stay as long as they wish. overnight stays are accomadated. Pain management can be a big issues, within a hospice this can be managed well. Also family are supported well during the illness and bereavement.

wishing you all the best

Jackaroo · 05/09/2011 09:00

Hi Queenie

sorry i don't have any positive info for you, but just re: your dad's thoughts on the hospice and not wanting info - my dad was the same and both ideas came from being scared witless. You might find that in a few days he will change his mind, well at least enough to listen to a macmillan nurse.

They were my saving grace.

will be thinking of you all,

OriginalPoster · 05/09/2011 09:13

Hi
Really sorry about your dad's diagnosis. My FIL had a grade 4 also, he was diagnosed in May and died at the end of August, several years ago. He gradually became more confused and had some fitting. Our hospice experience was very good. Nobody can ever say how long anyone's got for sure, but I would think months rather than weeks. Thinking of you, look after yourself and your dcs.

georgie22 · 05/09/2011 09:26

Really sorry to hear about your dad Queen - it's a horrid experience for all of you. GBM grade IV is aggressive as someone else has already said and he will need lots of support, both physically and emotionally. I'm a nurse specialist in community palliative care so have been involved with people with this diagnosis and know that families have benefitted from our support at home and access to the services of the hospice. I hope your dad has a neuro-oncology CNS at the hospital as they are often vital in helping to encourage people to accept hospice and/or community palliative care. Contrary to what some people think I don't spend all my time talking to my patients about dying - we can help with all sorts and we never force the issue but it's great for families to have access to support services. We can also help facilitate people being cared for in the place of their choice - not everyone wants to be cared for in a hospice. Without your dad's consent these teams won't be able to get involved. Hope that helps - message me if you need any other advice.

paddypoopants · 05/09/2011 09:32

I'm really very sorry to hear about your terrible news- my Dad had a grade 4 brain tumour as well- I think it may have been the same one as your FIL but as it was 16 years ago I can't remember. He was diagnosed in June and died in February of the following year. He had radiotherapy but it had no effect. He suffered from facial seizures but no pain. It was like little parts of his brain shut down gradually so although he was able to understand things his level of emotional involvement gradually went which was a blessing to us. He became physically more disabled with loss of mobility, balance etc. He was able to die at home because of the great work of the Marie Curie nurses to whom we will be eternally grateful. I would say if there are things to be sorted out whilst he he is still well enough I would do it as quickly as possible just because sometimes things can deteriorate quite quickly and then even out for a period.
I hope you all get as much time as you can with him.

Original poster

QueenOfTheMadhouse · 05/09/2011 09:34

Thanks for the info Angryfeet its very helpful.

I didn't consider that the radiotherapy may not work, his consultant said that she will keep chemo up her sleeve for later on.

I think my dad not wanting to know anything is through fear, when the macmillan nurse came to visit last week, she asked him if their was anything he wanted to know, or if he had any questions but he said no. I might try to arrange a visit at my house with the macmillan nurse or somebody so they can tell us what to expect while my Dad isn't there.

It's an horrible illness, and it seems to come on very quickly. When he was first admitted to hospital, he didn't recognise his grandchildren, and was showering in his trainers and doing very odd things like putting drills in the tumble dryer, but thankfully since he has been on steroids hes a lot better behaviour wise. He is still confused and has problems speaking and with his balance.

The tumour is in his frontal lobe on the left side, it is 5cm by 3cm they told us from the mri, and at hope hospital they said it has gone into the deep tissues of the brain and to the cerebellum or cerebrum, cant be sure which she said.

Thankyou for all your replies.

OP posts:

CoteDAzur · 05/09/2011 09:38

I'm sorry for your dad, Queen

A friend of mine has been diagnosed with GBM 4 two years ago. He was given 6 months to live and he is still here. He has various different treatments around the world and is now apparently what they call a "long term survivor". He doesn't want to see anybody and the e-mails I receive don't sound like him, but he is still among us.

I wish the best for your dad and your family.

CoteDAzur · 05/09/2011 09:41

My friend is young, still in his 40s, btw.

Thumbwitch · 05/09/2011 09:47

Queen, it will probably be the cerebrum, not the cerebellum (which is at the base of the brain at the back of the head).
I am glad that you have contact with the Macmillan nurse, they are so helpful.

moonbells · 05/09/2011 10:03

I am sorry, Queen. GBM is a horrible diagnosis and be prepared for the worst. I've worked in cancer research for 20 years now and have still not seen a GBM survive past 2.5 years (and that was the young, fit ones). When the RT/Chemo has got your dad back to some semblance of himself, use the window to go do things he's always wanted to do. I've always said if I get one, I'm off round the world.

Macmillan Nurses and Marie Curie Nurses are priceless.

Lots of information for people affected by cancer here - they help everyone, not just the person with cancer.

This is my local support charity: there may be others nearer you (depending on where you are!).
More information:
www.canceractive.com/cancer-active-page-link.aspx?n=356

If he wants to fight, ask the consultant oncologist to refer him for a clinical trial. There are usually quite a lot. The trouble with brain cancers is they become resistant to treatment after a while, so the consultants have to switch tactics when this happens. Trials will give you a bit more ammo. We've had quite good results from Avastin (which was developed for an entirely different cancer!) though it's only available via trials. PM me if you want.

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