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

285 to 390

From June 12-16, I took my first 5-night round of chemotherapy.  It's the same type of chemo I was prescribed two years ago, Temodar (that's the brand name, the actual drug name is Temozolomide), it came in a 3 pill "package" that cost me a $25 co-pay for each ($75 total!), but has the added bonus of being relatively well tolerated.  Together the 3 pills added up to 285 mg, with my next dose jumping to 390, an increase of roughly 36%.  My neurooncologist advised me to take a Zofran about an hour before popping them, just to ward off any potential nausea, although I chose not to based on past experience.  2+ years ago, it was just like taking 3 vitamins just before bedtime.  Though last time I initially took my chemo every day for 30+ days, followed by 6 monthly 5 night "maintenance phases," this time I jumped right into the latter; they have me on 5 nights chemo followed by 23 off ... indefinitely.  Between chemo prescriptions I'm required to have blood work done weekly at a local (Newark) lab, with the results being faxed to the same neurooncologist down at Penn Medicine.  On June 26th the neuro told me she does expect my blood counts to dip, and then recover, but they just wish to keep tabs on how far down they actually go.  Let's hope and pray that my counts recover quickly and without any real ill effect.

Also on the 26th, I met with the surgeon who cut into my brain and his nurse.  His nurse finally (FINALLY!) gave me the thumbs up to begin tapering off the Dexamethasone pills (steroids) I've been on since surgery.  They provoked a rash across my back and some severe cramping in my calves and hands (especially the heels of my hands).  But please don't get the wrong idea, these steroids are not "performance enhancing" by any means.  In fact, the only performance enhancement I've seen since taking them has been for "moon face contest" purposes only.  That's kind of a lame way to say they make my face look chubby, though it's mostly just water weight.  Anyway, as of this blog update I've been off the steroids for just over a week and yes, my face has thankfully returned to the ugly mug it was before.  I guess it was just water weight after all. So now I only take my monthly, 5-day chemo regime (only!) plus 2000 mg of Levetiracetam daily.  Levetiracetam is the generic equivalent of Keppra, an anti-seizure med and a financial Godsend due to its being ... well, generic (= lower copays).  Oh yeah, and I take vitamins too.

Another interesting thing that the surgeon who cut into my brain told me on the 26th was that my tumor, having risen from a lower grade mixed tumor-type, has the rare-ish characteristic of being a mutant.  It goes like this: some percentage (the percentage varies depending on whose study one reads) of lower grade tumors exhibit IHD1 mutations (for all you nerds out there, the technical name of IDH1 is "Isocitrate dehydrogenase") that carry into their higher grades.  My surgeon said it was "in my favor," which I took to be a good thing, and you can be sure that the whole way home, up the Parkway and everything, I was busy rooting out every nook and cranny on my phone's internet looking for more IDH1 information.  I probably wasn't very conversational during the 2-hour ride back to Newark, but boiled down I discovered that those with IDH1 mutations tend to live at least 8 times longer than those without (again, the estimated survival advantage varies by study).  Yes, I want to live and for as long as possible.  As Kenny Chesney most recently sang, "everybody wants to go to Heaven, but nobody wants to go now."

My next round of chemo begins the night of July 11th.  It'll only be for 5 nights and I expect to tolerate it well, but something about "cumulative toxicity" (my neurooncologist's term, not mine) has me a bit concerned.  I also looked up some reliable data that told me the likelihood of developing any new cancer just from taking Temodar increases with the first dose.  Sick.  Increasing the risk of cancer just to fight it.  If only I could have been born 50 years from now they'd probably have custom tailored cancer chemo already.  Your prayers in this regard are most welcome and absolutely appreciated.

Surgery Numero Dos

Since my last post I've had 2 grand mal seizures.  And since December, as a part of regular MRI monitoring, my doctors accelerated the MRI monitoring schedule to approximately every six weeks to keep tabs on "something suspicious" about which they couldn't come to agreement.  Finally, around the end of April and three days after my last grand mal, they did agreed on one thing ... that there was new tumor growth in my brain along the posterior portion of my original tumor cavity. 
On May 24 of this year, I went in for what's called an "awake crainiotomy." It was basically a four to five hour operation during which my general anesthesia would be "backed off" to allow me to come almost fully awake and answer several questions before being put back under.  It was preceded by a "functional MRI," that is, an MRI during which I would look at pictures, words, and sentences, while THINKing (not verbalizing) about what most appropriately follows.  One example is nouns.  During the MRI the doctors would show me several nouns and instruct me to think of a variety of verbs that associate with those nouns.  I tried to not think of swear words, but inevitably failed.  Just thinking of not thinking of swear words caused me to do so.  Another example is "fill in the blank," which is exactly what it sounds like, and another was "word-letter association."  During the latter I was presented with a single letter, say an "A," and instructed to think of as many words as possible that began with the letter "A."  This one was actually pretty stressful because the letter presentations were interspersed with very loud beeps that evoked some sort of pinball machine.  Regardless, they subjected me to this roughly 25 minute exercise in order to map my brain one week in advance of surgery and avoid any eloquent speech areas that could be affected by tumor removal. 

During surgery I initially remember feeling loopy, once they began the IV that is, and then waking up with the very vague feeling of somebody being inside my head.  I recall them showing me a picture of a crucifix and then asking me to count to 10 ... followed by a "slow down" (apparently I was too fast for them) and repeat.  There were several other pictures too, but I can't remember them.  My recovery went well, and I'm now northward of 85%-87% on most days and steadily improving.  Additionally, my co-workers donated, DONATED, 111 sick days to my sick day fund(!)  Wow.  For this I'm very very grateful, humbled, and amazingly blessed.  God is SO good in that He expresses His generosity through others.  That's really all I can say.  I can't help but thinking about and dwelling on His provision, and it also means I'll continue to be paid a regular paycheck each and every two weeks until sometime in October (although I intend to return in early July), but the option is always there.

So, onto the pathology report.  I was diagnosed with what's called a Glioblastoma Multiforme, WHO grade IV.  That's right, the cancer's advanced to its final, most aggressive stage.  Now, it doesn't mean that death is imminent, although it does set a general outside parameter to my life.  To the left is a chart from UCLA NeuroOncology, reflecting the latest survival data.  I felt it best to post both, as their age ranges bridge the gap between my where I am now and were I'll be in a few years (the former being the bottom chart).  As you can see, only a very small percentage of patients diagnosed with a GBM live beyond 5 years, although the historical data going into these estimates is, admittedly, becoming obsolete.

Since May 24th my cognition has been steadily progressing.  I went for a jog today and hung out in NYC yesterday with Roman, my sister's boyfriend.  We had good conversation and lots of tasty food (thanks to my dexamethasone, which makes food both impulsively appealing AND delicious!).  We walked the entirety of High Line Park on Manhattan's West Side, and although one day a trend does not make, I feel like I've turned a corner.  Stay tuned for more updates.