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. 

One Year-Wrapping Up.

It's been just over one year since my seizure, surgery, and diagnosis. Regular checkers of this blog have probably noticed that I haven't posted anything since early September, right after receiving news that there was no tumor progression per my first follow-up MRI. Health-wise that was undoubtedly good news, as was the identical report I received after a second MRI in early December. My next one is scheduled for late February. From here on out I can expect to have MRIs every 3-4 months or so, as the tumor Penn Medicine determined me to have almost invariably returns and catching it early affords many more treatment options. (but note that MD Anderson's diagnosis was markedly different and according to them it is much less likely the tumor will ever reappear)


Anyway, as you can probably imagine it's been an unexpected roller-coaster of a year. With everything happening medically, a wonderful summer out in Colorado, a taxing (but ultimately worthwhile) fall semester, a very relaxing Christmas break in both southern and northern California, and now an easy-ish semester focused almost exclusively on criminal law-related courses, the year began with a shock and ended on a note of cautious optimism. Through it all this blog has been instrumental for helping me process the emotions and thoughts I experienced, even if the words I typed did not seem to convey it. This blog was like a diary, I suppose, but with pictures. It was also a means for assuring me that Amanda, my family and friends, and I, were not all alone on this unplanned "adventure." You never can tell who stops by. Even if it didn't inspire any contemplative moments or stir any inspired intentions, it certainly was a huge help in that regard.

I don't plan to update the blog any further unless something significant (read: bad) comes up. So as long as you hear reliable rumors of my still roving the streets of Philly (or wherever we end up), it can be safely assumed that no news is good news and that my health is doing just fine. Thanks everyone for sticking with me and by me over this past year. I hope that, if nothing else, this blog has helped to foster an appreciation for what's really important in life, and how easy it is to take those things for granted.

"No Progress" Can be a Good Thing

Pretty much everything about Monday's doctor's appointment was uneventful, thank God. Upon review of last week's MRI, I got the "no progression noted" that I hope to hear time and time again going forward. This is certainly not meant to indicate that I'm cured or that the cancer has been otherwise eliminated. In fact, brain tumors of this sort are known to have vile little microscopic "fingers" snaking through the brain like the arms of an ugly little octopus. They're in there, and the goal is to regularly monitor my brain for an early catch of any attempted coup-de-tat. Most literature that I've found points to a pretty high rate of recurrence, but if caught early the options for removal can be relatively non-invasive, at least as compared to my initial surgery. So we'll just wait and see, with MRIs roughly every three months in the near future. This should then "taper" to MRIs about every six months after some point in time demarcating my passing the early stages when recurrence is a likelier prospect.

So I'm just sitting here in a Starbucks in downtown Philly on an almost 100 degree day, finishing a Frappuccino while completing my 3-credit independent study, considering next semester's class schedule, and looking forward to tomorrow's five-year anniversary of when I married the most amazing woman in the world. Wow, five years. Between now and our next five year anniversary, I intend to live life much more deliberately and with a greater attention to those in need. Life was never about what I achieve for myself, and it never should have been. But leaving a positive and transformative impact in the people who need me and what I can offer will indeed be a legacy to be proud of. It is 100% guaranteed that we'll all die sooner or later, and I definitely consider myself blessed to have had this wake-up call before it's my turn to go.

Summer Wrap-Up

Summertime in Colorado was, for the most part, amazing. Weather-wise, we had one or two 100 degree-plus days, several in the mid to upper 90s, and many more in the 80s. The nice thing about Denver's dry heat is that the only thing needed to beat it is a tree with some shade which makes it instantly tolorable. Dry Denver heat > humid (read: Philly) heat anytime. Work-wise, I've been plugging away at my three-credit, "Independent Study" summer paper to make up for some of last semester's credit loss, I worked on several legal briefs and research projects for the AG's office, and am still readying my applications for various post-graduation legal clerkships. Basically, and in addition to many other perks, legal clerkships are an excellent education in researching and distilling the law to its essence. They don't pay too much, are usually (but definitely not always) a law student's first job out of the gates, and in addition to amazing educational experiences they can be potent career-boosters.

Also, because I am certain that I want to litigate as opposed to write up contracts (an overly general description, but very basically lawyers are divided up into "litigators" and "transactional (contract writer-uppers) lawyers"), clerking after law school would be invaluable as litigation involves lots and lots and lots of researching and writing based upon statutes and past legal precedent (generally, cases). In addition to the wonderful skills I learned while working at the AG's Appellate Division, I sort of formulated my ideal career plan for the near future: clerkship, DA's office (preferably in Colorado, but Philly would be great too), and then either private practice or, ideally, into the U.S. Attorney's Office. So overall, and even accounting for my early June seizure, this summer's Colorado internship was very satisfying, just like last year's. I dramatically improved the quality of my researching and writing, I met wonderfully smart and interesting people, I was able to reconnect with some of my mentors from last summer, and I made it into the mountains several times. Though the economy has been rough for the legal field generally, and especially for the public sector, this summer experience has definitely solidified my desire to prosecute.


Health-wise, I've finished up three of my five-day rounds of chemo already, and my fourth will begin sometime in the next two weeks. I've had absolutely no problems so far, something that my doctor out in Colorado said is not uncommon at all for younger patients like myself. I've been exercising a lot, maybe four-five days per week, and biked about 30 minutes to/from work, as well as around Denver, pretty much every day. Amanda came out to Colorado to visit for two weeks, and our friends from California for one. Unfortunately the weather didn't really cooperate, but we did have a great time together and we were able to spend a few days up in the mountains. We even stayed at Estes Park's (unfortunately somewhat shoddy) Stanley Hotel of "The Shining" fame.

Also, I recently realized that one of the most important aspects of a doctor-patient relationship is based around active and open communication, especially when standardized methods of care are involved. Some of my Philadelphia doctors are disorganized, difficult to reach, and curt/impatient/borderline offensive when answering my questions. However, my neuro-oncologist out in Denver, though at times somewhat distracting to talk with due to his Tourette's, has been the most patient, informative, and caring of them all. Sure, it's nice to have doctors that are considered "the best in the business" due to their research prowess and high-level intellectual expertise. But when the standard of care for a specific cancer basically dictates the same therapeutic methods across the board, the best patient care is provided by the doctor who comes across as both accessible and compassionate.

Finally, now I'm back in Philly enjoying time with Amanda and our nephew who's come out from CA for a visit. Early tomorrow morning I have my first MRI scheduled to monitor the tumor and to "catch it" if it grows back and before it gets too large. This does tend to happen with brain tumors. The boyfriend of my summer internship supervisor had a brain tumor removed 4 years ago but it recently recurred, underscoring the importance of regular MRI's for early detection. Anyway I'll update again soon after tomorrow's MRI results come back...and hopefully with good news.

Imagine...

That you're sitting with roughly a dozen of your summer-internship co-workers at a local happy hour. As can be expected in Denver you're at a microbrewery, the beer is delicious, and you opt to try an intriguing and refreshing Left Hand Sawtooth Ale ... on draught, of course. Though you've been told that alcohol (ie, beer) can lower your seizure threshold (thus making a seizure more likely), you've had beer and other drinks several times since January, and a full pint on at least one other occasion since tapering off your anti-seizure medications.

You finish the satisfying pint in no particular rush, enjoying the beer's complex and well-balanced flavor, as well as the insider-joke-peppered conversation around you. You sit wondering at your good luck for landing such an internship where everyone is extremely smart, very personable, and also disarmingly nice, all while being willing to take a (serious) salary hit for rational working hours. As others at your age/stage in life work enormous hours for a commensurate paycheck, you realize how blessed you are to find yourself at 4:00 PM on a Wednesday with many of your co-workers, several blocks away from the office, drinking beer and discussing the upcoming weekend and everyone's planned adventures. You would love to work in an office like this one.

Then, imagine that without warning your vision/cognition immediately switches to the equivalent of an old-style film, not in sepia or black-and-white, but in color albeit with roughly every second and third frames removed. The world begins to stutter and, while you know that something is obviously very wrong, you're completely powerless to do anything about it. This lasts for maybe 5 seconds before you black out and wake up on the floor surrounded by paramedics asking you basic questions (like, "where do you work?") that you simply don't know the answer to. You just had (another) seizure.

This happened to me last Wednesday. Seizure numero dos. While the seizure itself is not really a big deal (as long as you don't bite your tongue or flail into something sharp/heavy then you'll likely be fine after your "post-ictal" phase completes), it's definitely embarassing to end up laid out on a barroom floor, while basic questions are asked to reveal to everyone that you are not even close to fully oriented. All in front of your co-workers. Regardless, after several attempts at trying to recall where I lived (it's crazy that I can even remember many of these questions!) I was taken to the Denver Health emergency room where they ran a few key blood tests and a CT Scan, neither of which gave any indication of tumor progression (thankfully). I wasn't admitted, and as a result of my seizure both Amanda and my dad decided to come out for a surprise (for everyone!) visit, which was great fun and unfortunately ended this morning. However, while they were here we walked all over downtown, over to REI, visited several coffee shops, and got to visit with Amanda's mom, aunt, uncle, and cousin, all who happened to be in the area at the same time. I guess I'll have to consider timing my seizures for bringing family together like's been happening these past 6 months. :) I'm a perfect excuse for a family-reunion, I guess.

Anyway, the doctors said that while seizure causes are not easy to pin down, it does seem that some residual swelling around the surgical site, the beer, the lack of anti-seizure meds, and a variety of other factors might have converged to make this one happen. They also called it a "partial" seizure, which I understand to be a milder form of the grand mal I originally had in January. Either way, it was an unwelcome event (and at a terrible time) but one which I'm confident is an ironic step in the right direction. No seizure is "good," but at least this one was milder than the previous, as well as a good way to get a CT scan showing no progression. Also, the next day I met with my summer-oncologist at The University of Colorado Hospital (who, very very interestingly, has full-blown Tourette's Syndrome) and am now almost finished with the first phase (five days straight/month=one phase; six phases total) of my maintenance chemotherapy. Once that's done they'll reevaluate and decide from there.

I hope to not have any more seizures if I can help it, or at least to have them at home would be preferable . Also, though I'm definitely not one to absolve myself or the world of responsibility and just say it happened because "God willed it," I do know that God has the ability and at times the will to make/prevent things from happening. Whether He wills my life to be one of tip-toeing on "seizure eggshells" or not, I'm sure it's a life that can be made into a beautiful purpose. It's that perspective that keeps me upbeat, the acknowledgment that, no matter what's going on in life, it could always be worse. There's always the potential to live a meaningful, joyful, and exciting life beyond ones immediate condition. Another seizure, even in front of a dozen or so coworkers in the middle of happy hour, is no exception.