One patient with glioblastoma still alive nine years later
by Randy1958 on Mon Nov 12, 2012 12:30 AM
I finally received the go-ahead from the insurance company to make a neurology appointment, a requirement before I can return to work. Haven't done it yet; I finished my last 400 mg Temodar last Friday, and I need to regain my strength, which should take about three weeks or so. There's no hurry from my boss for me to come back; I'm wondering what I might expect from the neurologist. Thanks!
by johngiustino on Mon Nov 12, 2012 01:26 AM
It may be more of a formality. I don't think the neurologist will be able to predict your future. If you are not on it already, you may want to ask about Keppra - seizures are always a possibility, especially if you had surgery.
Can you get access to a neuro-oncologist? I really recommend you do so. A neurologist and general oncologist do not equal a neuro-oncologist. A NO can keep you informed as to what your clinical trial options are and typically can treat your condition with more knowledge and experience. For example my NO has a special MRI protocol tailored to brain tumor patients.
I wish you the best,
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