It all started with a pilocytic astrocytoma...
Hello. Twenty-five years ago my son had a pilocytic astrocytoma completely removed from his left parietal lobe – Grade 1 benign. He was 14 years old. Doctors said it was all gone, that was the end of it, no further treatment was necessary. One year ago (my son is now 41) he had a seizure at work and MRI showed a lesion in the left parietal lobe at the site of the earlier surgery. We have had a nightmare year. the diagnosis has gone from Grade 1 to Grade 4 to “atypical, unusual, “rare-we just don’t know a lot about these.” He had the tumor removed (99%) one year ago, followed by six months of radiation and chemo. All MRIs this past year looked great – then at the one year mark, MRI showed a regrowth right at the edge of the surgical site. That’s where we are right now.
We are at a hospital in NYC that has done genetic testing on the tumor – as per my son’s neuro-oncologist, “It doesn’t behave like a Grade 4 and it doesn’t have some of the genetic markers. It does have a high proliferative index. That’s what has them all in a tizzy…yet it took a full year to return. The tumor that was removed had no necrosis, no microvasciular proliferation and surgeon saw no infiltration. In the OR he thought it was benign.
I have done so much research on pilocytic astrocytomas in the last year and I know they are truly unique tumors that present in many different ways. Nevertheless, we are all confused and must now figure out what to do about this regrowth.
Twenty-five years asymptomatic…
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Glad to hear you're doing since switching medications.
When I had that seizure a few years ago, I was put on Keppra, too. It did not agree with me! Being irritable & tired to name just a few problems…. My doctor put me back on phenobarbital. (I was taking that drug before my surgery.) I'm on a low dose, but it seems to be working. So many of these seizure drugs can make you feel like a zombie. Like after I get home for work, I'm exhausted. If I don't keep moving, I'm worthless! What about you?
Early afternoon is my time for exhaustion. Even caffeine doesn’t help! But moving around does seem to help.