Round #4 of potentially 6 rounds is now over and done with. And the results?…. Nothing!
That is actually a good thing. We can’t tell from the MRI if the tumor is alive or dead but it’s not growing, thank goodness. They suggested that I try one more round and evaluate how I’m feeling. With each round I’ve gotten more and more worn out but still no serious side effects like they see in other patients.
My competitive side of me wants to “go the distance”, but I’m tired of feeling blah all the time and I’m getting really tired of all the blood draws. The financial savings alone is almost tempting to stop now, but like Jamie said, I guess I need to think more long term. Besides, the doctor’s assistant that we’ve known now for 4 years has never seen anyone complete all six rounds so he wants to see if I could do it. This one’s for you Sean!… yeah right.
If there is so much as one remaining cancer cell left in my brain, I want it gone. So for now I’ll keep going.
My main issue recently has been the increase in seizure frequency and intensity. I went from mid Sept to Feb 7th with no seizures worth reporting. Then I had the one on Feb 7th – not sure what could have triggered other than it was reaction to lowering my meds. Then I had one about a month and a half later on March 20th. That was probably triggered by the crash on the skateboard. I had one a month later on April 24th, no idea what triggered that one. Now a few weeks later I had one on May 11th while on vacation in St George. Probably late nights and a rousing game of UNO caused that one. The last one was just a few days later on May 14th, not sure what caused that one either other than I was a hour and a half late on my pm meds.
These last few seizures have been extremely painful and nearly unbearable. The doctor said today he thinks I may have cut my meds back too far and suggested stepping them up.
Here’s where I’m at now:
Total: Mornings – 2000 mg keppra, .5 mg clonazepam.
Noon – .75 mg clonazepam. (I just increased this from .5 to .75). I may do more based on the seizures but this drug makes me very drowsy.
Evenings – 2000 mg keppra, .5 mg clonazepam.