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Glioblastoma grade 4

roseanneamy
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My lovely 75 year old dad was diagnosed with glioblastoma last September after 6 months + of debilitating headaches and tiredness.

 

 He had 4 weeks worth of radiotherapy and chemotherapy which ended in November but has now said he doesn't want any more treatment because the effects of the treatment he has had have been awful - 6 months ago he was babysitting my 2 year old twice a week and today I had to help him put his shoes on and do his trousers up due to muscle weakness and the shakes.

 

 I've found it really difficult to get an answer out of his specialist team as to what his prognosis is. I'm finding the situation stressful enough but the not knowing what the future is going to look like is really hard. I also have a 7 week old baby at home so am dealing with the effects of being tired and emotional from that end.

 

Any experiences with this would be welcome.

Parents
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    Good morning. I have GBM4 (aka Brian) and  I have had it since July 2019. I am currently on chemotherapy with MRI  approximately every 3 months. I was stable for 2 years but in September last year it came back and is now inoperable. However my last MRI at the end of January said it had gone stable again. We will not know if still in same status until next scan either end of April or May. My wife and children (both grown up) struggled at first to cope with it but we take each take at a time. Everyone is different so timescale for this all over the place. The treatment was difficult at first but it passes honest. I am 59 (60 next month) and will keep on fighting Brian until one of us throws in the towel. I have no intention of it being me. 

     

    John

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    Good morning. I have GBM4 (aka Brian) and  I have had it since July 2019. I am currently on chemotherapy with MRI  approximately every 3 months. I was stable for 2 years but in September last year it came back and is now inoperable. However my last MRI at the end of January said it had gone stable again. We will not know if still in same status until next scan either end of April or May. My wife and children (both grown up) struggled at first to cope with it but we take each take at a time. Everyone is different so timescale for this all over the place. The treatment was difficult at first but it passes honest. I am 59 (60 next month) and will keep on fighting Brian until one of us throws in the towel. I have no intention of it being me. 

     

    John

Children
  • Offline in reply to Tyke62

    Hi John,

     

    Thank you for replying! I'm so sorry to hear of your diagnosis, but your outlook is fantastic - I keep saying to my dad how positivity is the best way to handle things. I hope Brian is behaving himself and you are not suffering from any abject side effects!

     

    x

  • Offline in reply to roseanneamy

    Thank you. I get the side effects when I have my chemotherapy. I have the injection and then 10 days oral tablets. Brian plays up every now and again with stabbing pains but it only last a few seconds. Always look on the bright side as the hole is deep. I discovered that early on. 

    Focus on the next day. 

     

    John 

     

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