Clinical Trials

Up until the middle of August I thought my chemo was effective.  However, as the most recent MRI at the time showed it wasn't even close.  The enhancing effect of my tumor (basically, the area of swelling associated with the tumor) showed that it had jumped to the right side of my brain from the left.  Hopefully this is not a sign of progression.  Anyway, my neurooncologist suggested that I look into clinical trials but closer to where I currently live.  After much back and forth between UPenn Medicine and a canceled appointment at Sloan-Kettering (due to neither my pathology slides nor my MRI records having been received at the latter), I was finally able to make a visit with S-K's Dr. Omuro for a clinical trial.  As I am now at S-K, I am no longer a patient at UPenn Medicine. 

Because I conveniently live right on the PATH line that shoots into the World Trade Center transit hub, making my monthly appointments at S-K is no problem at all.  Also, one of the benefits of participating in a clinical trial is that the medicine they give me is, well ... free.  My "every month-and-a-half" MRIs are covered by my excellent Essex County health benefits (except for a $5 copay), and I haven't received a medical bill in the mail for about 4 months now.  So I've been given free medication in the form of "Plexxikon 3397" (again, it's being tested in this Phase 2 clinical trial), of which I am to take five pills twice a day ... for the foreseeable future.  A Phase 2 trial basically means that the experimental treatment is given to a large group of people to see if it's effective and to further evaluate its safety.  Phase 1 is solely to determine the maximum safe dosage, and is usually preceded by various animal trials.  

So I've been on Plexxikon since the beginning of September.  Two problems however, are that within the past week I've had 5 stuttering-type seizures (where I am stuck on one syllable for about 5-10 seconds, am fully aware of what's going on around me, and I "emerge" as lucidly as when I went in), and my hair is turning completely white.  Right now I'm pleased with my salt-and-pepper gray look, as it lends a distinguished flair to my mane (see pictures on the sidebars).  But this probably won't last, because the roots of my hair are largely white.  However, the seizures worry me a lot more.

For example the last seizure was only about 5 seconds long, consisted of my repeating the same letter combination over and over, and sometimes ... laughing at the ridiculousness of my having this seizure.  No, it wasn't hysterical laughing, but rather a fully conscious of what's going on type-laugh.  It felt like I was stuttering for about 5-10 seconds, and if this happens in court one day then I'd be truly embarrassed.  It's kind of like when you're shivering, you just can't help from making noise while doing it.  I wonder what this is all about, but I still have appx 1 week to go until my next MRI (it's scheduled for Election Day) and I feel like I can wait it out until then.  I report all of my seizures to the doctor and so he decided to put me on Lamictal, another medication in addition to my 3000 mg Levetiracetam.  Although this remained a recommendation, I decided not to follow it because of its not-so-insignificant chance of causing a deadly rash and the fact that the Levetiracetam I'm on already makes me tired.  Fortune cookie wisdom: Deadly rash plus a generally hashed feeling make for bad bedfellows.

So, I pray that God will lessen the side effects of the Levitaracetam as after the first dosage increase (that is, after my first reported recent seizure) it hit hardest.  They increased my dose by 50% in stages (to the maximum) and while I still get that "spaced out" feeling every now and then, I can occasionally occupy myself with something mind-numbing to do until it passes.  Again though, if it occurs during court then I'll be in mild trouble.  I say "mild" because its occurring would in no way signal the end of the world, but it would be another uncomfortable reminder of the reality that I face when I'm just trying to be a good lawyer.

Also, my Race for Hope Team, Equipo de Tumores de la Cabeza ("Team Tumor Head"), is running a 5k to raise money for brain tumor research.  We've raised a little more than $4,000 at this point and raised the bar multiple times; this humbles me.  It begins at the Philly Art Museum steps November 4th at 8:00, and if you can make it I'd be grateful.  If not your contributions all help drive the research engine designed to fight this deadly disease.  If you wish to sign up, here's a link to the sign up info: http://www.braintumorcommunity.org/site/TR/Events/RFH-PA?px=2851178&pg=personal&fr_id=1910