Brivanib optimism

Back again (as of 10:30 p.m. last night), and mostly happy to be here, although it's a little hard to leave the hotel we were staying in behind. It was really nice. 

My health remains in a pretty routine groove, so the interest in the visit was more in what we found out about the study. BT was on vacation so we met the main doctor behind the brivanib trial for the first time. We asked him how he was feeling about the early returns of the trial, and his answer was surprisingly definite. He's feeling really good about it. 

In about six months, they've enrolled about 60 Memorial patients into the trial, and something like 52 of them are still participating. They've seen responses, partial responses, stable disease. They've seen people with stable disease on drug get randomized into the placebo, progress, and get back on the drug and back to stable disease. He said that something like 80-90 percent of people so far were getting some kind of clinical benefit from the drug. "We don't have anything else like that," he said. 

Obviously, "clinical benefit" doesn't necessarily mean what we want it to, e.g. a meaningful increase in life expectancy or quality of life. And this report is anecdotal and premature. But whatever it does for me, it looks like brivanib may turn out to be a good drug, especially for people with liposarcoma.

In another note, we talked briefly about the study's unusual protocol, which sounds like it emerged from many discussions between this doctor and his colleagues and the folks at the drug company. The company needs a placebo group to have faster and more definite proof of the drug's effectiveness. But as an oncologist, the doctor I saw hates placebos. So the study design is an attempt to provide the data the company needs while minimizing (or eliminating) time spent on placebo. Take notes, Ariad.

Craziness

Two somewhat bizarre things:

1) A scoop of gelato from Grom costs $4.75 and is served in a cup uncomfortably similar in size to the plastic ramekins fast-food restaurants use for ketchup.

2) It's worth it.

Holes

As a dabbler in the holes cliche myself (eg, "The first rule of holes is when you're in one, stop digging," or "We're in a hole and Barack Obama is the man with the rope") I was tickled to read an evisceration of Thomas Friedman's use of the trope.

via Daring Fireball, here's an anti-Friedman rant from Matt Taibbi:

Or how about Friedman’s analysis of America’s foreign policy outlook last May:

The first rule of holes is when you’re in one, stop digging. When you’re in three, bring a lot of shovels.”

First of all, how can any single person be in three holes at once? Secondly, what the fuck is he talking about? If you’re supposed to stop digging when you’re in one hole, why should you dig more in three? How does that even begin to make sense? It’s stuff like this that makes me wonder if the editors over at the New York Times editorial page spend their afternoons dropping acid or drinking rubbing alcohol.

Chicken bib

So I've been taking brivanib (pronounced with a short vowel: bri-VAN-ib) for almost two weeks now but I haven't said much about it. I'll try to rectify that soon, but first a few quick hits on my experience of the trial so far:

• T. and B. found the name of the drug ridiculous. I guess I never ran "deforolimus" by them. T. started calling it "chicken bib," which I like quite a lot, and B. came up with something along the lines of "brivablaster," which I also like, not least because the drug actually does inhibit fibroblasts. I don't actually know what fibroblasts are, but they sound like things that need inhibiting.
  
• The trial, even more so than the deforolimus trial I participated in, requires a huge investment of time and money, especially if you don't live close to a trial center. I have been to New York three times already for pre-screening and to begin the drug, and we have several more trips coming up weekly until we move to an "easy" once-every-three-weeks timetable. The good news is that hotels are dirt cheap by NY standards, and I am developing an appreciation of the whole boutique hotel concept. (The downside of that is that I'm going to be ruined for when rates jump through the sky in spring.)
• Side effects are little hard to judge so far. My blood pressure redlined immediately (like within an hour) of taking the drug for the first time, and managing it required a fair amount of tinkering with drugs that have serious side effects of their own. Like many folks, I have a short period of dizziness/wooziness shortly after taking the medicine that fades quickly. I feel more short of breath and equilibrium-challenged generally, but the blood pressure medicine plays a role in that also. No gastrointestinal effects to speak of. I have had a couple days where I was almost laid out by fatigue, but I'm not sure what's going on with that. Although my general level of tiredness has definitely increased, the periods of intense tiredness lasting from a few hours up to a whole day have been somewhat sporadic and unpredictable.
• You take brivanib every day, which is kind of nice in terms of routines. Deforolimus was five days on, two days off, and every weekend I would panic at some point that I forgot to take the medicine before remembering that I didn't need to take anything.
• There was some commotion over whether I would need a biopsy (paid for by the drug company) to gather tumor samples. Fortunately, I had enough left over from past procedures to satisfy them. Despite some earlier grousing about the folks at Sloan, they've ended up being pretty solid in terms of taking care of things and getting me started on the study on the earliest possible timetable. Oddly, they are way more relaxed about trial procedure and protocol than the folks at my home hospital; they didn't even mention the BLACK PEPPER PROBLEM until I happened to see it on a sheet I had to ask for.
• Yes, the BLACK PEPPER PROBLEM. I can't eat freakin' black pepper. Nasty white pepper, OK; limited-versatility red pepper, fine. But black pepper -- my cooking touchstone -- is a no-go. Apparently pepper works on some of the same receptors and could compromise the effectiveness of the drug; it's not going to kill you or anything. But I had to become one of "those people," and ask a waitress at a hip restaurant to ask the kitchen not to add any additional pepper to my lobster roll. I tried to explain that it wasn't that I didn't like pepper, it was that I was taking a new medicine that didn't get along with it. Nonetheless, she was bemused and said something along the lines of, "You're allergic to pepper?" No!
• OJ and grapefruit juice are also not happening, though at this point I am mystified by anyone who drinks grapefruit juice, as it seems to be about as dangerous as battery acid for those taking any kind of prescription medicine.
• But hey, even with the new dietary restrictions, at least I'm not one of these people.

Anniversary

I have had occasion twice this week (and it's only Wednesday!) to try to tell someone new the whole story of my illness: from disastrous appendectomy to abscesses and multiple procedures to diagnosis and treatment and the present. 

Three years of surreal hardship and fragile, intermittent hope. Three years of crushing disappointment, yes, but also three years of being surprised; surprised by the kindness and generosity of family and friends (and, sadly, surprise at their lapses and my own), surprised by the talent and caring of amazing medical people, surprised by the resilience of my body and mind. This is a dangerous and seductive road for me to go down -- the route to hell is paved with "poor me" rather than good intentions -- so I'll stop. But three years. Damn. (And three years, of course, is nothing compared to how long many have been dealing with sarcoma. Double damn.)

The thing is, though, I'd take three more in heartbeat, with tearful gratitude and for almost any price.

*

And the reason I started this post: This blog turned a year old a week ago today. It began like this:

I am writing this from a warm place in a small town in a cold state. 

It is a little bit more than 16 months after I was diagnosed with a rare cancer that will more than likely kill me. It is also little bit less than two hours until I begin fasting to prepare for a PET scan that will take place about 14 hours from now.

Although my rate of posting is incredibly slow, enough material has accrued here that it can be hard for folks who joined midstream to get a handle on what this place is about. To try to help them out, I'm going to try to compile some links to my favorite entries. Thanks for reading. Let's hope for another year.

On competence

I was in an examination room across the city at Sloan at the time the USAir jet ditched in the Hudson River, but just a couple hours earlier I was riding Amtrak along the river, watching as it turned from completely iced over upstate to largely open in New York. 

Reading this article about pilot "Sully" Sullenberger, a veteran of the Air Force, certified glider pilot, and union accident analyst, made me grateful, again, that our dynamic economy hasn't quite been able to squeeze expensive experience and competence out of the system. Although it may turn out that Sullenberger made mistakes that put his plane and passengers at risk, I doubt he did, and in any event it seems clear that his response to emergency was masterful. I'm sure struggling US Airways would have liked to have dropped the high salaries of Sully and others like him from their payroll, but the man looks cheap now. How many lives did his decades of experience save? How many lives were saved by the fact that this man could do exactly what was necessary? 

I had already been thinking about a quieter form of competence after having my blood drawn at the clinic. The last few times I've gone, I've gotten the same phlebotomist, and he is exceptionally good. His skills have removed a major source of anxiety from my visits -- I know he will draw my blood smoothly and painlessly, without the multiple failed attempts that can leave me in trembling wreckage before even seeing a doctor. He doesn't get paid any more for being a great phlebotomist. I doubt even that the hospital has any performance metric for nurses and phlebotomists to measure their ratio of success to failure (but maybe they should). He is simply an intelligent man who takes great pride in his work, approaches it analytically, and succeeds at an unusually high rate. I'm so grateful for that.

Never give up?

The indispensible Olga of the Sarcoma Alliance bulletin board recently posted a link to an article with a dry title, "The Role of Investigational Therapy in Management of Patients With Advanced Metastatic Malignancy," but an inspiring message. An excerpt:

In many fields of medicine there is continuing progress, improvement, and opportunities, and as physicians in advising our patients, we have to be prepared for success. When patients receive hopeless diagnoses, it is important for the physician to discuss palliative care,1 but it is equally important—and perhaps more so—for the physician to be knowledgeable about, and to discuss frankly and positively with the patient, the options for participating in clinical research at major research centers where new therapies are being developed.

Many patients are advised that participation in early clinical trials has a record of a low frequency of benefit, perhaps 3%. Is 3% too low a probability of success to participate in such trials? The answer is that for the 3% it was certainly worthwhile, particularly for those patients who have long-term benefit. Furthermore, benefit rates from even the earliest experimental trials in the most dismal setting—advanced, refractory cancer—may have been underestimated. Indeed, a meta-analysis showed that the complete and partial remission rate for phase I cancer trials was 10.6% among almost 12,000 patients, with approximately a 44% benefit rate if less than partial remission and disease stabilization were included.

Home again

I have about 10,000 thoughts, but they'll have to wait until I can make some sense of them. 

For now: I made it out of Kingston and into Manhattan and started the trial on Thursday. So far, the visible side effects have been minimal -- a swimmy, light-headed feeling about 45 minutes after taking my first dose (and again right now, a little less than an hour after today's dose). The invisible side effect is more serious, but hopefully manageable. As I had been warned, my blood pressure spiked almost immediately after the first dose and stayed high all day. The spin from the research nurse is that getting this side effect is a good thing -- it shows my body is sensitive to the pathways/targets/receptors the drug works on. She also said that they have had great luck in managing brivanib-induced high blood pressure.

Matters of accommodation

In a crass attempt to build my Google rankings, as well as to provide a service for travelers who find themselves in Kingston, New York in the midst of a snowstorm on their way to Sloan Kettering Memorial Cancer Center, I offer a few tips:

The first is that the Roadway Inn here is a lot scarier looking than the Budget 19 Motor Inn, a fact that in itself scares me quite a bit.

The second gets into matters of marketing: If you are going to knock something off crudely, knock off something that people want. One of this fine city's motels, apparently in an attempt to dupe exceptionally inattentive or sub-literate fans of the Travelodge motel chain, has dubbed itself "Superlodge." Now perhaps there is a market for, say, a Y Hotel to snatch some business from the W. But a fake Travelodge? Oh my. 

The third tip relates to matters epicurean. The restaurant at my chosen house of lodging, the Quality Inn and Suites, features "Atlantis salmon." Delicious with beurre blank.

The fourth is that it is always a bad sign when a place of hospitality touts among its amenities a "TV remote control."

*

You might ask yourself, as I repeatedly have, why am I driving six hours through mixed precipitation to get to Sloan when I have already purchased a non-refundable ticket to ride for 49 minutes in a leather seat on JetBlue Airways watching their 23 complimentary channels of DirecTV. 

The answer is simple: I have been banned from flying. 

Dr. BT alluded to this earlier and I blew it off, but I happened to have an appointment to see my pulmonologist today. Over the course of two hours and a chest X-ray, she moved from being "wary" of me on an airplane to "antsy" then "concerned" and finally opposed. Airplane cabins are pressurized to the equivalent of 8,000 feet or so. That and the shifting air pressure during altitude changes might cause the last tenuous threads of pleura holding my lungs up to snap, collapsing my poor little lung into a heap like a cheap raincoat dropped to the floor of a... Superlodge. 

As I've often been reminded, the human lungs are magnificently redundant -- you can get by, sort of, with a third or possibly even 20 percent of their potential capacity -- but since both my lungs are partially collapsed, I can't tempt fate. Welcome to Kingston.

Metasnores

The Times' Well Blog did an interview with an editor at the paper who has begun blogging about his experience with prostate cancer. He sounds like a great guy and has interesting things to say, but I wanted to highlight for a second his thoughts on the great cancer metaphor debate. To recap my feelings, I completely agree that defining the cancer experience in terms of battles or wars is hugely limiting, in part because they are ugly, in part because the corollary to that kind of thinking is that you win or lose battles. And if you unpack the idea of "winning" or "losing" at cancer, you can see how a lot of insidious baggage attaches itself to cancer patient. Who wants to be a "loser?" Who wants to not have the "will" to "fight?" But volition is so frail in the face of certain diseases. 

Anyway, here's Jennings on his preferred metaphor:

There are some catchphrases surrounding cancer and other serious diseases that I’ve come to bristle at. I don’t feel brave. I feel that I’m willing to talk about myself as an experiment of one. I don’t much like the phrase “battling cancer” — it’s a testosterone-suffused image about how you deal with disease. The metaphor I prefer is that it’s a dance with cancer. That’s much more subtle. My two sons are 19 and 22. I do want to set an example for them about how you can be a grown man and face a difficult situation. That’s important to me.

This is kind of a great thought in many ways, so I'm not going to make fun of it, but let me just say: Dancing doesn't do it for me. 

Although now I'm humming to myself, Sinatra-style: "I won't dance, don't ask me. I won't dance, madame with you..."

Back from NYC

I should start tagging posts again, because "Back from New York" is going to be the title of a lot of stuff around here. 

L. and I went to Sloan again on New Year's Day, staying at a fab boutique hotel (with a Robert Mapplethorpe print hanging on our room's wall -- I was going to say it was vaginal rather than phallic, but now that I think of it, it was both) and eating our usual great meals.

I also had a CT scan -- nothing disastrous has cropped up in the last month, and the bad node is hanging steady at three centimeters, though it's hard to tell precisely what has changed since the last scan because of a computer foul up -- and a few other tests. The hold-up now in terms of starting the brivanib trial is the need to provide an "adequate" sample of my tumor. We were of course aware of this problem and tried to push the people at Sloan to work on it before we left town, but nothing happens until you are actually there so we are now up in the air about whether I will be starting the trial this week, next week, or several weeks from now after another biopsy. With any luck, I have enough tumor in the freezer (right next to the Ben & Jerry's!) to satisfy the study requirements and we can start right up. But that's unknown and unknowable at the moment, as the MSKCC folks haven't even asked for the slides yet. Sigh. So once more into the breech for L., who is both my loving wife and a badass patient advocate.

In the middle of my day of tests and waiting for Dr. Bow Tie we snuck off and had lunch at Zarela, a very good Mexican restaurant that's a few blocks away from Sloan's "outpatient pavilion." Margaritas were ordered, leading to much hilarity about me walking drunk into BT's clinic. "Drunk? Me? I didshn't tie that bow tie! Yer drunk!" (I actually stayed stone sober, though now that I reflect upon it, getting drunk wouldn't have been a bad idea...)

Update: Where's Tumor Waldo? Quite possibly on the way to Sloan-Kettering, apparently, thanks to an on-the-ball employee of MSKCC. So it looks like we will start on Thursday. As for the stuff up there... uh, never mind? 

Futures

via the Wall Street Journal's Health Blog, a nice little story about a young orthopedics resident who is training with the physician who operated on his childhood bone cancer. "Going through this, I saw the ability the physicians had with, not only saving my life, but to give my life back," says Dr. Trevor Banka, who was treated at age 12.