inoperable glioblastoma, having palliative radiotherapy

green8
green8 Member Posts: 2
edited January 2014 in Brain Cancer #1

My mum has recently been diagnosed with glioblastoma, inoperable since it is in the corpus callosum. She's been offered palliative radiotherapy,  36/10 ie 10 days.

Anyone here have experience of how effective radiotherapy will be at slowing growth? She's not having any chemo, and is coping amazingly with radiotherapy. Dex has completely turned her symptoms around although obviously we are aiming to reduce those if possible.

 

 

 

 

Thanks

Comments

  • mccindy
    mccindy Member Posts: 81
    #2
    why?

    What is the reasoning behind doing radiotherapy without chemo?  Temodal usually works better with radiation, they tend to boost each other and have greater effect on GBM. I see you mention it as palliative.  Has your mother been seen at a major brain tumor center?  That's usually the best idea, as other oncologists and neurologists usually are not very experiences when it comes to treating brain tumors.

  • green8
    green8 Member Posts: 2
    #3
    mccindy said:

    why?

    What is the reasoning behind doing radiotherapy without chemo?  Temodal usually works better with radiation, they tend to boost each other and have greater effect on GBM. I see you mention it as palliative.  Has your mother been seen at a major brain tumor center?  That's usually the best idea, as other oncologists and neurologists usually are not very experiences when it comes to treating brain tumors.

    We were also concerned to

    We were also concerned to start with that she was not being offered chemo concomitantly with radio, and wanted to know why the radiotherapy was only for 2 weeks.

    She's over 70 and had poor performance rating on presentation, hence not being offered chemo. If she does well after radiotherapy they may offer chemo, but actually she has said she would not want this. She's been discussed in the regional meeting with neurosurgeons etc, and her consultant is nationally renowned, and has shown us the studies which support his plan, so we, and more importantly, she, believe she is getting the best care.

    We're just unsure how long we have. We want to make the time she still has as loving and special as possible. It breaks my heart.

  • mccindy
    mccindy Member Posts: 81
    #4
    green8 said:

    We were also concerned to

    We were also concerned to start with that she was not being offered chemo concomitantly with radio, and wanted to know why the radiotherapy was only for 2 weeks.

    She's over 70 and had poor performance rating on presentation, hence not being offered chemo. If she does well after radiotherapy they may offer chemo, but actually she has said she would not want this. She's been discussed in the regional meeting with neurosurgeons etc, and her consultant is nationally renowned, and has shown us the studies which support his plan, so we, and more importantly, she, believe she is getting the best care.

    We're just unsure how long we have. We want to make the time she still has as loving and special as possible. It breaks my heart.

    heartbreaking

    It's so sad to hear that she's at that point.  Others I have taked to who have lost loved ones to GBM have told me that their loved ones did not suffer, slept a lot and had a very peaceful death.  so try totake comfort in spending as much time with her as you can, and knowing that she will just sleep herself away.  And timelines don't mean anything - almost no one I've spoken to who was given one had their loved one even close to following it.  Everyone is different.  Keep talking to her, even when she sleeps.  She can hear you and feel your love.

  • Mannie
    Mannie Member Posts: 52
    #5
    green8 said:

    We were also concerned to

    We were also concerned to start with that she was not being offered chemo concomitantly with radio, and wanted to know why the radiotherapy was only for 2 weeks.

    She's over 70 and had poor performance rating on presentation, hence not being offered chemo. If she does well after radiotherapy they may offer chemo, but actually she has said she would not want this. She's been discussed in the regional meeting with neurosurgeons etc, and her consultant is nationally renowned, and has shown us the studies which support his plan, so we, and more importantly, she, believe she is getting the best care.

    We're just unsure how long we have. We want to make the time she still has as loving and special as possible. It breaks my heart.

    I just had my 3rd tumor and

    I just had my 3rd tumor and only had CyberKnife (radiostatic surgery).  It's possible, based on the pathology report, that this is the best plan of attack for the specific genetics of the tumor. Treatment is also decided based on the size of the tumor.

    My last radiation was Jan 2, 2014. My hair has been falling out for the last week. I'm bald in the front (again). I won't know if it worked for another few weeks. 

    Radiation  works by destroying the tumor's DNA and isn't immediate.

     

    I had IMRT with the 1st tumor, 42 treatments, in 2007.

    Chemotherapy kills the cells, including tumor, hair,  blood cells, etc.

    Since her case was reviewed at Tumor Board, she has many doctors working on her case, not just the ones you know and see. 

     

    Good Luck and I hope it works out.

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