Hi All --

Wow.  It certainly is nice to be so welcome here!

In truth, the reason I hardly ever post is because I'm just swamped for time.  Between helping with the kids, renovating a new house, and of course battling cancer (both professionally and for my life), it's been hard to steal time for writing the kind of long diatribes I like to write.  My wife finally put her foot down.

Just today, however, I have special dispensation because of a medical adventure I've just endured that necessitates, in part, that I practice typing.  (My typing seems to be fully recovered actually, but I can still use it as an excuse.)

Here's the story:

Back at the beginning of my disease in April 2007 (non-small-cell lung cancer, with metastases to spine, ribs, left eye, and possibly brain) I had a wildly favorable reaction to a relatively new drug called Tarceva.  The primary tumor in my lung and the tumor in my eye were thoroughly wiped out.  The tumors in my bones shrank to the point where they were completely asymptomatic.  Such responses have been observed from time to time -- they call us "superresponders" -- but it's been rare enough that we often get written up as case studies.

(In my case, just for fun, I made arrangements to monitor the course of treatment with a time-lapse movie of the tumor in my eye -- the cool thing about an eye tumor is that you can see it -- which showed that it collapsed literally within days of my starting on Tarceva.  This has led to two publication submissions, both of which I coauthored with my doctors.)

Anyway, one thing that's pretty much established about people with a response to this drug like mine is that it usually doesn't last.  Basically, within two or three years, we're guaranteed to reenter uncharted territory.  And, right on queue, that's the type of territory I've started entering.

There's been a bit of progression in my bones, though not life threatening.  The real problem was what was happening in my brain.  A series of slow-growing, tiny tumors started popping up like popcorn.

There are generally two good therapies for treating small brain tumors, both based on radiation.  If you can be confident that you're really seeing all the tumors, and there aren't very many of them (about 5 is a typical cutoff), then it makes sense to zap them individually and leave the rest of the brain untouched.  On the other hand, if you think there are more, zapping the ones you can see individually is a waste of time.  The best thing to do is just irradiate the whole brain to kill off even the stuff you can't see.

When my last scan showed signs of 8+ tumors, it became clear that we weren't seeing them all.  The whole-brain route would be the right one.

Now this is where things get interesting.  In the past, patients who reached the point of being sent to a radiotherapist after NSCLC progressed to the brain were being sent there only for palliative care.  Generally, it meant that the whole disease -- even elsewhere in the body -- was completely out of control, so the job of the radiotherapist was just to ensure that the brain tumors weren't the thing that killed the patient first.  They just needed to quickly shrink the tumors down to an asymptomatic size, and then let nature take its course.  They know how to do this very well.

My case, however, is completely different.  The disease elsewhere is almost completely under control, and I've hardly touched most of the newer drugs on the shelf yet that could bring it the rest of the way.  My radiotherapist said he'd never seen a patient who looked as healthy as me.  There's a general consensus in radiotherapy that it should be possible to keep guys like me alive for years (at least).  But there's no consensus on how to do it.

One of the big problems is what to do with the drugs that got us here; Tarceva in my case.  Drugs interact with brain radiation in complicated ways that aren't well understood, even in the case of older drugs.  In general, radiotherapists prefer to stop all chemo during their treatment, just because they don't know what it will do.  Radiotherapy is short, so they just hold their breath for a couple weeks and hope nothing too bad happens.

My doctor at Sloan, however, was nervous about this course.  He'd done a study a couple years ago of 10 patients in whom Tarceva had started to fail and the results implied it nevertheless still had therapeutic effect.  On the other hand, he had seen some cases of bad interactions between radiation and Tarceva.  In the end, we decided to stop Tarceva only at the very last minute, so its effect would wear off about a day or two before radiation started.

This plan turned out not to work so well.

The day the Tarceva wore off, I lost my ability to touch-type.  Sat down at the keyboard and only gibberish came out.  Then, after the first two zaps of radiation, I could hardly speak or move my right arm.  My wife took me to the emergency room, and a new MRI indicated that some of the tumors had doubled in size over the course of just one week (probably less time, actually).  The immediate problem, though, was that this had made the radiation a bigger irritation to my brain than expected, and caused substantial swelling.

The swelling was dealt with by big doses of steroids, and I was able to communicate again by the evening.  Then the next day I went back on Tarceva, and continued the radiation.  Another brain scan 5 days later (still in the hospital) showed about 20% reduction in the actual tumor sizes.  This can only be attributed to Tarceva, since radiation doesn't work that fast, so I guess I'm still a superresponder.

I recovered from all this very fast during my hospital stay, and I've been home from the hospital for several days now.  I'm being weaned off the steroids.  As far as I can tell, all my cognitive functions are back, including my typing (as you can see).  I have just four more radiation zaps left to go, and they should go off without incident.

Looking back on it, I guess I just dodged a bullet.  But I didn't feel like that's what I was doing at the time.

So what got me through this hospital stay?

The main answer is just fascination with the fight itself.  I don't mind being in uncharted water (it certainly beats all the charted water surrounding me).  The fact is, as scary and painful as it might sometimes be to have the disease, this is an extremely exciting time in cancer research.  The Genome project means that this research is no longer dominated by trial and error, which basically is a form of evolution souped up with statistical analysis.  Instead, we're entering a time of actual, real, intelligent design, performed by the only intelligent designers there are -- humans.

And intelligent design, once the intelligence for it exists, moves fast.  Think of it.  It took billions of years for blind evolution to figure out a way fly across the oceans.  But from the Wright brothers to the Moon was, what?, 70 years?

For me, this whole adventure sometimes feels like taking a ride on a Wright Flyer in a county fair circa 1905.  Dangerous as hell, yes, but what kid wouldn't jump at the chance?

(Of course, all else being equal, it'd be best not to have cancer.  But if I've got to have it, I might as well make the most of it, no?)

-- Matt