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Monday, 18 December 2017

IDH1-mutant, 1p/19q non codeleted oligoastrocytoma, needs help

This came in to my inbox, and I was asked to post it to the blog:

My son was diagnosed at age 17 with IDH+ 1p/19q negative left frontal lobe oligoastrocytoma...possible recurrence (vs. incomplete resection) at age 18 treated with surgery and proton therapy (no chemo). At the time of starting proton therapy, it was felt that there might a small left-over area in the middle of his tumor bed--but all scans clean for years. He has done fairly well for years with no treatment.  His aim has been to be a neurologist...graduated college Phi Beta Kappa, very good MCAT scores, and now first year medical student.  6 month scan today shows a 6.6 mm nodule enhancing in the middle of his tumor bed.  Never had enhancement before.  Understandably, I am devastated.  He is not certain that he wants more surgery.  However, it is not near a critical structure.  BUT....if there is treatment after surgery, want surgery done at place where could be coordinated with further treatment.  I have been reading your blog daily for years and greatly value your wisdom (based on evidence-based medicine) and that of many of your commentators.
Thank you so much for any help!!

3 comments:

  1. I suggested the Toca 6 trial as best option if eligible.
    https://clinicaltrials.gov/ct2/show/NCT02576665

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  2. Complete resection and multimodal immunotherapy is also a valuable option.

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  3. Did he have any problems after first surgery?

    My personal opinion is to go for surgery if possible, especially if the tumor is not close to critical structures. I have a friend who had complete resection of low grade oligodendroglioma, recurrence after 8 years with another complete resection. Now he has clean scans 10 years after his second surgey, without any other treatment.

    Toca and immunotherapy are also promising, but I think best in combination with complete resection.


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