Glioblastoma multiforme brain tumour

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My Dads 'aggressive' GBM 4 diagnosis seems to more passive and prolonged a year on!

Wilko1970
Posted by

Hi All

My Dad collapsed whilst on a walking holiday in New Zealand with his partner (Feb 2018) (I lost my Mum suddenly to Cancer 5 years ago) - he had a scan and required an operation immediately (debulking) and we were given the GBM 4 Multiform diagnosis and told it was 'very aggressive'. My Dad was 74 then (I'm 48)

My brother and I flew out to see him and then had to come home to try and arrange his return to the UK which was also testing, but we got him back and he had great care in Manchester / Stockport and after some rehab we got him home for about 2 weeks (he had only one weeks treatment of chemo / radiotherapy).

His heath deteriorated quickly and after only 2 weeks at home he was admitted into full time nursing care (May 2018), he has remained in the same room for over a year, he can not see, he can not walk and has to be fed, he  doe snot know who we are or who he is but still his heart pumps and he lies there a withered Dad from who he was....

From the beginning (Oncologists, Nurses, Dr's and McMillan staff) we were told it would be days, possible weeks... we were preparing for it and the speed it seemed to take my Dad it made sense, now it doesn't... 13 months!!!

He has not been able to speak, watch, talk for over a year, he has not known who we are for about 8 months... when he wakes he seems restless so is given medication till he sleeps again, each visit it appears he has lost a little more weight... and on it goes...

I have good support from my family and brother and his family, my friends, work colleagues and local McMillan services etc....

I'm writing today as I can't seem to find a story similar to mine / ours, It's hard to accept that this is the new normal and my Dad will continue to live like this for...?

apologise for any spelling / poor grammar I'm posting this before fully checking it (before I change my mind...)

Madesp
Posted by

Hi Wilko1970

This is just another example of how different GBM is in everyone who has it. You don't mention any scans and outcome of those. Is tumour stable or  growing. Your dad is so strong in other ways or is fighting this to the end. He's clearly not yet ready to go. My heart goes out to you all as it's so difficult seeing him this way. 

No one can provide info on exact prognosis we are all individuals not the standard the doctors say we are. 

I hate it when oncologists provide the prognosis that Gbm survival is 12-15  months. This is just a statistic and some people live far less and some still alive some good few years after even though they were told the same.

Must be NHS protocol to tell everybody this. 

Mad 
Madesp
Posted by

Hi Wilko1970

This is just another example of how different GBM is in everyone who has it. You don't mention any scans and outcome of those. Is tumour stable or  growing. Your dad is so strong in other ways or is fighting this to the end. He's clearly not yet ready to go. My heart goes out to you all as it's so difficult seeing him this way. 

No one can provide info on exact prognosis we are all individuals not the standard the doctors say we are. 

I hate it when oncologists provide the prognosis that Gbm survival is 12-15  months. This is just a statistic and some people live far less and some still alive some good few years after even though they were told the same.

Must be NHS protocol to tell everybody this. 

Mad 
Chichester
Posted by

Sadly the statistics are worldwide. The truth is thatmedics are unable to guess against statistics. It’s safe to say that many will discuss facts with patients. The surgery is completed and the pathology arriving later. I was told before craniotomy the theme survival of 14/16 months. The first meeting after op suggested that I might live longer. Just before radio and chemo( good MGMT), the oncologist suggested a 3 year survival. The scans have shown no change and I am at 3 years and still no change. Latest oncologists are good but they continue to suggest return of tumours. But they can’t say when. I had a pink drink before the operation and total resection occurred. I am almost back to normal with few side effects. Tiredness after lunch lunch and tinnitus in the left side is all that exists at the moment. I have had my driving license return so we carry on, fingers crossed and 69 years old.

Alan

JAJR..GLIOBLASTOMA 4

Chichester
Posted by

Sadly the statistics are worldwide. The truth is thatmedics are unable to guess against statistics. It’s safe to say that many will discuss facts with patients. The surgery is completed and the pathology arriving later. I was told before craniotomy the theme survival of 14/16 months. The first meeting after op suggested that I might live longer. Just before radio and chemo( good MGMT), the oncologist suggested a 3 year survival. The scans have shown no change and I am at 3 years and still no change. Latest oncologists are good but they continue to suggest return of tumours. But they can’t say when. I had a pink drink before the operation and total resection occurred. I am almost back to normal with few side effects. Tiredness after lunch lunch and tinnitus in the left side is all that exists at the moment. I have had my driving license return so we carry on, fingers crossed and 69 years old.

Alan

JAJR..GLIOBLASTOMA 4

Wilko1970
Posted by

Hi Alan

Thanks for the quick response, it’s lovely to hear your story and that things are almost back to normal for you...

My dad hasn’t seen an oncologist since he was admitted to the care home (the oncologist will not visit and my Dads too poorly to be moved- an unfortunate situation) so we aren’t able to see any recent scans and results... it’s just a terrible waiting game...

Good luck to you and your family and I hope you have some amazing times and experiences ahead of you...

Thanks again Paul

EYintheUSA
Posted by

Wilko1971  I'm so sorry for you and your family.  How cruel.it is to live through your Dad's suffering. 

Chichester, Lovely to hear you are doing so well.

Peace and love