So I'm still doing the Avastin treatments every two weeks as I mentioned in my last post and have to schedule an outpatient MRI for this month to see if it's helping stop the cancer from growing. But in addition, my chemo oncologist at Aria put me in touch with a doctor at the Abramson Cancer Center at Penn Medicine.
There's a clinical trial of a vaccine that would basically bolster the immune system to fight the cancer cells in my brain. The Penn doctor said she feel it's very likely that this will be approved by the FDA based on the results so far. In order for me to be part of the trial they obtained my pathology from my surgeries -- particularly the slides containing bits of the removed tumors, which they have to test for the presence of a genetic marker targeted by the vaccine. It will take up to two months to get the results.
On a more disconcerting note, the facial twitching that set off this whole odyssey? On Saturday evening, after months of facial peace, the spasms returned. Unlike every prior incident, this time the left side of my face spasmed on and off for about 90 minutes. It would settle down briefly and start back up again, over and over. I went to the emergency room and they did a CT scan of my brain, which showed nothing worse than what it did before.
A possible cause: that day I slept in late and didn't take my first daily dose of meds until about 3 pm. This included Keppra, the anti-seizure med they put me on in April for these "focal seizures." But I'm skeptical because I've been on these for months. I wouldn't think a half-day delay would have had such a drastic effect. It had me worried.
After too much waiting for the test results on a bed/gurney that was ridiculously uncomfortable to lie on, I was ready to leave. The doctor said that although the CT scan didn't show a possible cause, I could stay overnight for observation if I wanted. I declined. Nearly five hours in the ER was enough. There hasn't been any twitching since. If it does happen again, then I'll really worry.