Further treatment

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Hi all, 

My dad was diagnosed last November 2020 and has had the operation to remove most but not all and chemo and radio treatments. His tumour was behaving and looked as if it was shrinking ever so slightly. To find 4 weeks later it has spread massively to his speech lobe area. His current chemo was to be continued on and off until sept. 
He has been told today that he will receive now due to the spread, two types of chemo via oral and! intravenous. My sisters wedding is Sept and they hope he can have his chemo- off around this time so that he can attend. The hospital say now that it’s a matter of keeping it at bay more so than anything else and I fear that come the end of September he may refuse further treatment… They’ve said if he stops now he will not make the wedding as he’ll be incredibly unwell. 
but if he carries on the treatment after September then what? The treatment isn’t forever. I just wondered if anyone else has gotten to this stage that he is at? who can maybe shed some light. I know we don’t have the answers but any info would be appreciated. Hope you are all doing as well as you can be. Thank you! X

  • This diagnosis I’m referring to is glioblastoma multiforme. Sorry should have mentioned that part 

  • HI Nicola88

    noticed that no one had reached out yet. 

    Sorry to hear your dad has had this horrible GBM4 diagnosis.  My husband (age 51) got his GBM4 diagnosis in early Sept 2020. He had the surgery to debulk the tumour as best they could and that was followed with 6 weeks of chemo/radiotherapy. He declined all further treatment in January 2021. 

    Everyone's journey through this GBM4 experience is different and there don't appear to be any hard and fast timescales here. I know our timescale has varied and now I don't even know what it really is. We just take things one step at a time. My husband has been fortunate in that his tumour has affected him mentally more than physically so far so he can still run (He's a marathon runner) albeit shorter distances in a slower time than he likes. Mentally I can see he's declining slowly. He's easily confused, can only follow simple instructions, can barely read and his speech gets quite mixed up but he's making the best of things. 

    I hope that your dad's team can work out his chemo schedule to allow him to attend and enjoy the wedding. At least it give him something positive to focus on and to look forward to.

    Hang in there. Stay strong. 

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much for your response. It is much appreciated. 
    It is nice to hear your husband is carrying on with his fitness as best he can do. 

    Will your husband ever consider taking any further treatment the hospital could offer? or is there no going back for him now?

    my dad has been struggling for some time with his speech and it was being controlled with steroids until it got a little too much. Hence the second scan to find the tumour had spread. It’s so difficult when there are so many others out there dealing with the same diagnosis but living a completely different life. 
    my dad was physically fit in his job but since not being able to work anymore, his general health and weight gain has rapidly gotten out of control. This I feel is due to his lack of wanting to do anything. It’s difficult to get him out of the house for most things, the only exercise he really gets is walking the dogs around the local field across the road. Then the exercises with the physio through his hospital. I’m certain due to his speech, he avoids any social interactions with people. 
    It has been confirmed his new triple treatment will start on Friday and we can only hope that it will have some form of good effect on him. They’ve also confirmed he will be on a rest break for my sisters wedding but they cannot confirm either way if he’ll be well enough to attend. So fingers are crossed tightly for this. 

    Thank you again for your response


  • Hi

    he was offered 6 months of oral chemo (1 week on 3 weeks off) back in January and he declined saying he wanted quality of life not quantity. When the dr mentioned that there's fresh tumour activity, he repeated that he didn't want any more treatment. I have to respect his choice.

    He was a high flying IT project manager and then overnight almost ended up the way he is and it's been a bitter pill to swallow. Apart from the speech/memory issues, he can't read anymore. His car, his work and his running/sports were his whole life and all he sees that he has left is his running. It's sad beyond belief.

    That's great news that your dad will be on a non-treatment week for your sister's wedding. Fingers crossed he still feels well enough to enjoy the day. It'll also be giving him something to look forward to and to focus on. I really hope it all works out. Moments like that are so precious.

    Hang in there. Stay strong

    love n hugs

    Wee Me  xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm