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Thread: Update on my sister

  1. #1
    Regular User
    Join Date
    Dec 2012

    Update on my sister


    It's been a while since I last posted here...
    My sister had a craniotomy for a grade II astrocytoma a little over 5 years ago. At the time, the neurosurgeon informed us that a GTR was achieved, although we're not so sure now; there is some disagreement about whether what was first claimed to be scar tissue is in fact tumour tissue that was not removed.

    There have been no clear signs of visible growth since then, but unfortunately her seizures have been hard to control during the past 6 months. She had a number of general seizures (with loss of consciousness) late last year, following from a period of experiencing smaller micro-seizures. As a result, she was switched from lamotrigine to lacosamide. However, lacosamide increased her fatigue and seemed to be unable to keep the micro-seizures (uncontrollable twitching of one arm) at bay. The neurologist subsequently put her on sodium valproate, but she had another breakthrough seizure last week (not long after the switch). She's now being switched back to lacosamide, and the neurologist may increase the dose if needed. Levetiracetam is no longer an option, as she had severe psychotic reactions to it early on in her post-surgery follow-up period.
    The neurologist is going to consult the neurosurgeon again, as she's surprised by these breakthrough seizures that seem to be quite treatment-resistant. She suspects that something may have changed recently in the anatomy or pathology of the tumour, even though the last MRI showed no change.
    We're also planning to get a second opinion from another neurosurgeon.

    In summary, while there doesn't appear to have been a recurrence - at least based on medical imaging - in over 5 years, she's struggling due to treatment-resistant seizures that are having a significant impact on her quality of life (she's essentially unable to work).

    Any thoughts or comments much appreciated.


  2. #2
    Super Moderator Top User
    Join Date
    May 2011
    Do you have an epileptologist available near you. They are the true experts, as opposed to NSs and NOs. That made all the difference for me in seizure management.

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)


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