Monday, October 31, 2011

Follicular Genetics

The pumpkins are carved, the decorations are up, the candy bowls are filled, and my very creative children will be putting their costumes on soon: Flamingo Girl (superhero alter-ego, whose signature move is The Devastating Kick of Goodness); Scottish Richard Nixon Goat Man (don't ask); and an accident victim.

That last one got me thinking: just how offensive would it be to dress up for Halloween as a cancer patient? I've never seen it done, but I'm not sure even I would go there.

(Then again, I could pull it off by just going as myself and asking for candy. Play that cancer card, baby.)

Anyway, this bit of news is way more treat than trick:

A VERY cool post on the blog Not Exactly Rocket Science, by Ed Yong, from Discover Magazine online.

The post is called "From Unknown Cancer Gene to Potential Cancer Drug," and it explains research on Follicular Lymphoma conducted by Dr. Elisa Orrichio of Sloan-Kettering in New York.

Yong is very excited about this research, and its future implications for Follicular NHL, but also for some other types of cancer.

The research by Orrichio and her colleagues looks at the genetic changes that take place in the DNA of fNHL cells. Yong gets into more deatil about it, but Orrichio's big discovery was that there is a particular gene called EPHA7 that was missing from the fNHL DNA. (She did some very creative research to come to this conclusion, as Yonmg's post describes.) This strand, it seems, keeps fNHL at bay, so when it is missing, the lymphoma appears.

This is a major discovery. But it's only a first step to a treatment. How, for example, do you get a strand of genetic material back into a cell?

Dr. Orrichio actually figured out a way -- at least for the mice that she was working with. Of course, doing so in a lab sample is different from doing it in a real patient, but the research does provide some excellent news.

The take-away from all of this is multi-fold: we may have a pretty big clue as to what causes Follicular NHL, at least for some patients; we may have a start of finding a treatment and maybe a cure for those patients; we may have a headstart on helping some other cancer patients as well: EPHA7 is known to be a missing gene in several other types of cancer.

Overall, a really promising piece of news.

I'm going to celebrate by eating 12 fun-sized Baby Ruths.

Saturday, October 29, 2011

5k Today

This morning, I ran in the SCSU Homecoming 5k road race. It was my first race in well over a year. The results: I came in 2nd place for my age group.


I've run in this race in 5 out of the last 6 years now; in fact, this was the first race I'd ever run, back in 2006. It's usually a small field, always under 100 people -- faculty, staff, alumni, and students, mostly. Lots of familiar faces.

I like this race because it is small -- it greatly increases my odds of winning a prize. It starts early, at 8:00am, and I arrived at about 7:30 to register. They gave away purple long-sleeve shirts this year, and I have to say, they look pretty nice. I checked in, pinned my number to my shirt, and found a quiet corner to listen to some music. From my quiet corner, I couldn't see how few people were registering. The field was even smaller than usual -- only 38 runners. When the race began, I lined up close to the front, so even then, I still didn't see that there weren't many people behind me. I took off fast, and with so few racers, I thought I was up front with the fast runners. (Ha!)

The race course begins on campus, goes through the neighborhood nearby, and comes back on to campus with about a half mile left. I started out fast -- too fast, I think. It's much easier to do that in a small field, when there's so much open space between runners. Add the fact that I haven't raced in so long, and I'm not used to pacing myself, and we have a potential disaster on our hands.

It didn't take long for me to realize that I needed to slow down. It was a chilly morning, about 37 degrees at race time (which probably kept some people away), and my lungs aren't used to running in such cold temperatures. They quickly let me know that they were unhappy.

About a half mile into it, the field was pretty much settled -- everyone was about where they were going to end up. I had passed three or four people soon after the start, but now there was a lot of space behind me, and a woman about 20 yards in front of me.

It stayed that way until we had about a mile left, and we were approaching campus again. I had starting hearing voices behind me a few minutes earlier. I figured they were students. They just had a kind of loudness to them that I would associate with youthful enthusiasm. But the voices got closer and closer, and then I realized they were so loud because they were a couple of older people, and their hearing was probably going. I recognized one of them as a retired staff member. As he and his friend passed me, I heard him casually describing his horrific tendon injury ("Yeah, the doc said I really need to take it easy.")  I'll spare you the gory details of the injury. After the race, I told him that I didn't mind being passed, but it really wasn't necessary to describe his injury while he was doing it. He apologized, but his friend cracked up.

Being passed by a reitree with a tendon injury  did inspire me to pick up my pace a little, and I closed in on the woman who had been 20 yeards ahead of me the whole time. She heard me and picked it up a little, too, so that surge was kind of a waste of energy. I should have saved it for better things.

With about a half mile left, we came to the edge of campus, and were greeted by a long, moderately steep hill. I always try to save a little near the end of this race, so I can make it up this hill OK. Which I did. But halfway up the hill, I heard footsteps behind me, and found myself being passed by a man who was probably a very good football player at one time (he was built like a former football player, anyway). As he passed me, I touched his shoulder. "Oh, man," I said between huffs. "Do you have to pass me on a hill?" He laughed, and the feel-good endorphins from the laughter propelled him up the hill, past the woman in front of  me, and out of sight.

As we approached the finish, I still had a little bit in reserve. The PR department's photographer usually waits just past a scenic wrought iron gate at the edge of the quad, about 200 yeards before the finish. Makes for a nice photo. I run with a very short stride, so in past photos, I've looked like I'm walking, or maybe shuffling. This year, I decided I would surge through gate, with a good long stride, so my photo would look like I was sprinting to the finish.

Of course, the photographer stayed inside instead, so my sprinting surge was wasted. Coupled with the emotional letdown of not getting my picture taken, and seeing the woman in front of me start a nice finishing kick, I limped the last 100 yards to the finish.

The photographer eventually got my picture, later, as I reached for a second container of full-fat cream cheese for my bagel. Thanks.

So my final time was about 30 minutes and 50 seconds. They didn't give official times, so I'm going by my watch. I had forgotten to turn it off until a few second after the finish, so I'm estimating my time. I had hoped to break 30 minutes.

Still, it was good enough to finish in 2nd place in my age group, earning myself a $10 gift card to Dunkin' Donuts. (And, yes, there was a third place finisher, thanks very much.)

So, to review all of my excuses:
  • I haven't been running outside as much these days because my mornings are busy;
  • The cold weather made my asthma flare up;
  • The small field made it hard to pace myself;
  • The course is really hilly;
  • I was emotionally devasted by being passed by a retiree with a horrific tendon injury;
  • I'm old;
  • I'm fat;
  • and I'm slow.
(And I hope you noticed that I didn't even mention that I have cancer. Not playing that card today.)

It was nice to race again. I hope to do it more. As winter approaches, there aren't as many races, but there are a few nearby in the next few months. I'll keep you updated.

Thursday, October 27, 2011

The Cancer Card

Dr. Wendy Harpham has a great blog called On Healthy Survivorship (that I've linked to before, for postings I have both agreed and disagreed with).  Her most recent post is called "The Cancer Card."

"The Cancer Card" is what cancer patients play (or don't play) in an attempt to get their way. As in, "Can I have that last piece of pizza? I have cancer." Or saying to the ice cream vendor at a minor league ballpark, as he hands you a plastic helmet full of cookies-n-cream, "I have cancer," in the hopes of getting free sprinkles. I've been doing it for a long, long time -- look back at some early Lympho Bob entries. (Unfortunately, while I've been playing the card, it hasn't really worked; my blog entries mostly talk about family and friends not taking pity on me, and forcing me to do the dishes anyway, or stand up to drink my beer at the bar because they won't give up their seat.)

A few weeks ago, I discussed a New York Times article on cancer and humor, which featured this comic from Marisa Acocella Marchetto:

Anyway, Dr. Harpham throws a little cold water on this. She says that, playing the Cancer Card can be a good thing -- it could get you something good, and could also make someone else feel better by doing something nice for a cancer patient. But, on the other hand, playing the card can make you stand out, maybe in ways that you don't want to. Lots of us don't want to be treated differently, and playing the card guarantees that you will.

But you know what I say? Screw it. Play the card. At least every now and then. You earned it. Own it. (And if your experience in anything like  mine, all you're going to get out of it is a blog entry, anyway.)

Monday, October 24, 2011

Humor and Cancer

Here's a link to an episode from Radio Free Humankind called "Humor and Health." It's about 10 minutes long, and it isn't really groundbreaking -- it gets into why humor and optimism are beneficial to the immune system, and especially for cancer patients -- but it's ncie anyway.

It features interview clips with several doctors and patients, including a comedian, Marion Grodin (daughter of the actor Charles Grodin), who incorporated her cancer diagnosis and treatment into her act. About 7 minutes into the podcast, she gets into how she was able to joke about it all. (She's pretty funny. After her double lumpectomy, she said to the doctor "Just cut it all off. My ass, my head. I'll just be an arm on top of a foot." You can see more of her here if you're interested.)

I've said it before -- humor is so important, to me, anyway. I know there are people who wouldn't dream of joking about their cancer, because it's just too serious an issue to them. But for me, being serious just gives cancer too much respect.

Friday, October 21, 2011


Another excellent article from Betsy de Parry, distant cousin and NHL rock star. This one is called "The commercialization of breast cancer: do your research before contributing to the cause," and it details Betsy's frustration with seeing so much pink merchandise this month, apparently in the name of breast cancer research, awareness, and support.

Betsy isn't the first person to feel cynical about all the pink. I certainly feel that way, wondering how much of my $2.00 pink-wrapped bread purchase will actually be going to breast cancer research. Mary Elizabeth Williams has a nice piece in Salon from earlier this week, and, as Betsy notes, the group Breast Cancer Action has a "Think Before You Pink" campaign that calls into question the "pinkwashing" of so many products.

It would easy to dismiss all of the criticism as mere cynicism, or maybe even jealousy -- there are no lime green bagels at Panera in September for blood cancer awareness, after all. The breast cancer folks have really done an amazing job at getting their awareness message out.

But, as Betsy writes, no one wants to hear about lymphoma. Unlike breats cancer, "it's just not sexy," Betsy was told when she tried to push lymphoma stories to the media.

And that's where the difficulty comes. Breasts are sexy; lymph nodes just aren't. It's not simple jealousy. People (the people who can spread a message) just aren't interested. And, as I ranted about recently, when they do get interested, they screw it up.

I will say that the breast cancer awareness campaign has done a very good job of making people aware, and of removing the stigma associated with breast cancer, which was one of those cancers that just couldn't be talked about, because breasts have so many complex cultural associations that go along with them. So, my congratulations to the folks who got that message out. They really should be commended for that.

But I'd like to hear more from the people who sell bread and bagels in the name of awareness, and find out exactly where that money goes, and how much is going. And, to trumpet Betsy's suggestion, now that we're more aware, maybe some of that money could go to helping breast cancer patients directly, like paying for treatment for women who couldn't otherwise afford it?

Wednesday, October 19, 2011

No Comfort in Statistics

The New York Times ran a really nice piece Monday called "Finding Little Comfort in the Statistics of Survival." It's written by a doctor who was diagnosed with breast cancer; she struggles with the various ways that the size of her tumor is measured, and with the implications of the size -- a certain measurement will mean she is at a different stage, and thus has a different statistical chance of survival. The piece is really about the effect that such numbers can have on a cancer patient. She gets (relatively) good news in the end, but it's no comfort to her.

Some lessons to be learned here.

The first is about the arbitrariness of some of the numbers that cancer patients might receive. As this article points out, four different tools for measuring a tumor (CT scan, ultrasound, etc.) can offer four different figures. It's too inexact. A different radiologist, a different technician, a different angle while lying on the table, and there's a different result. It's all the same tumor, but it means a different treatment, or a different night's sleep. It's hard, maybe impossible, to step back and be objective about it while the doctor is giving you results, but I think that's important to remember.

The second lesson is the difficulty of evaluating survival rates. Like the surgeon in the story says, when the author mention survival rate tables, "But that's not you." We aren't statistics. There are way too many factors involved with each of our cancers to start worrying about where we fit into the table -- the average of hundreds or thousands of people with cancers that might be like ours, but might be really different. (Plus, most of those tables are for Overall Survival -- they measure how long before people dies of anything -- cancer, but also heart attacks, plane crashes, choking on ham sandwiches, whatever.)

As I've written before, I've pretty much sworn off of numbers. They bring me no comfort when they're good, and the times I've been deeply depressed about my cancer, it's been because of numbers, obsessing over the what-ifs that the author of the Times piece obsesses over.

I have lymphoma pals who feel just the opposite. They can tell you just how big their nodes were, what their Uptake Values were for their last PET scans, what their LDH levels were for their last blood tests. They need something concrete to hang on to. God bless them. But I just can't do it. When I had my last scan a couple of months ago, Dr. R left a message with the results. "Things actually look a little better than the last scan," he said. "Call me if you want the details."

I never called. My wife and my mom wanted me to, I know, dropping subtle hints that I should call.

But why? So I can know that my nodes were 1.8 centimeters a month after I stopped Rituxan, and now they're 1.6? To me, that's not much comfort. I know my nodes aren't going anywhere. In 6 months, they could be back up to 2.8, or 3.6.

That's not pessimism. Just the opposite. I expect that we'll be around for a long time, my nodes and me.

No sense in paying them more attention than they deserve.

Monday, October 17, 2011

Flu Shot

The Center for Disease Control is urging everyone to get a flu shot.

Flu levels are low right now, which makes this a good time to get a shot -- before things get bad.

I got mine last week, like the good Do-Bee cancer patient I am.

(Wow -- saying I'm a good Do-Bee brought back some great memories of Romper Room, one of my favorite shows when I was a kid. I can't remember the name of the "teacher" from back then, but this version from 1980 is pretty good, too. I don't remember there being an actual Do-Bee, though, and I really don't think my favorite teacher could dance in heels like the one here.)

And I waited every day for the teacher to say my name when she looked through the magic mirror, but she never did say "Bobby".....

(And just in case my brother starts up with that "We never had that stuff when I was a kid" nonsense, Romper Room started in 1953. So deal with it.)


Anyway, don't be a Don't-Bee -- get a flu shot.

Friday, October 14, 2011

Booing Cancer?

OK, I've been throwing this around in my head for a couple of days, and I need to post about it.

Tuesday night, fans at the Philadelphia Flyers game booed a video that had messages from some players from rival teams.

Unfortunately, the video was a promotion for the league's efforts to fight cancer through their partnership with the Leukemia and Lymphoma Society.

I can take several perspectives on this.

First, I look at this the way a sports fan looks at it. Philadelphia fans are...passionate. And I have to respect that. I've been to a Phillies game, so I've seen firsthand what they're like. And there's nothing like seeing a game when the whole crowd is into it. Of course, Philadelphia fans can also get out of hand. Like the time they booed Santa Claus and threw snowballs at him. Or when they beat up Chief Zee, the Redskins mascot (read about it in the right-hand column on this link). Or when they cheered Michael Irvin almost getting paralyzed....And that's just the Philadelphia Eagles fans.

So in some ways, booing their rivals isn't so bad. No one's bones were broken, after all.

But then I look at it as a lymphoma patient, particularly one who is getting increasingly frustrated lately with the lack of accurate information being provided to people about the disease. (And I can't speak for all cancer patients, but there are a whole lot of them who get tired of all the pink stuff in October, and wish their own cancers had so much publicity.) So I'm not happy about the opportunity for education and promotion being drowned out by a bunch of boos.

But when I step back and think about it, I have to put some blame on whoever made the video and decided to show it at NHL games. The video starts out with three hockey players introducing themselves. Before you even know what the video is for, you've already lost a whole bunch of fans, other than those of the Penguins, Sabers, and Blackhawks. It's just poor design. Make local videos with players from each team to show in their own arenas. Cut down on the booing, and get people to pay attention.

And in case you did want to donate, since Sidney Crosby asked you to, you can text HFC to 90999, and you'll donate $5 to help hockey fight cancer.

(Didn't know if you caught those details over all the booing.)

Wednesday, October 12, 2011

Follicular News

Fascinating Follicular news out of the University of Rochester yesterday: researchers are looking closely at the possibility of using the body's immune system to fight Follicular NHL.

The big news in Cancerland a few weeks ago concerned that very small trial (3 leukemia patients), where doctors manipulated the patients' own immune systems to fight off their cancer. The article linked above isn't the same thing, but it involves the same principle.

There have been lots of studies recently that have looked at the microenvironment of tumors: not the cancer cells themselves, but the immediate area surrounding them, and all of the stuff that's in that area, and everything happening in that area. For this study on fNHL, researchers isolated T cells, one of the types of white blood cells in the immune system, in infected lymph nodes. They found that the T cells in the nodes were arrayed differently than normal T cells. Not so surprising. But more surprising was that when those T cells were removed from the nodes, and thus from the microenvironment, they behaved like normal cells. Pretty clear evidence that the microenvironment plays some role.

The scientists speculate that the T cells, which fight off invaders in the body, are being shut off by the microenvironment. If they can figure out what exactly is doing the shutting off, they can fix that, and the T cells will go back to fighting the invaders -- in this case, the cancer cells.

This is another step toward that broad goal of having the body fight off the cancer on its own -- the ideal, really, since it would use the body's own defenses rather than some artificial agent.

Certainly something to keep an eye on.

Monday, October 10, 2011

Laughing at Cancer

Yesterday's New York Times featured an article called "Laughing at the Big C," which discussed the recent trend of comedians and others making jokes about cancer. Of course, this isn't really a recent trend (and in fact, the article gives a nice history of comedians who have dared to bring up the subject of cancer in their acts, from Julia Sweeney, who performed a one-woman Broadway show about her experiences with cancer, to "Robert Schimmel, who used to tell an unprintable joke involving the Make-A-Wish Foundation and Dolly Parton."

So while there is a history of making light about cancer (or, to maybe put it more accurately, a history of confronting cancer and refusing to be intimidated), the recent film 50/50 has brought the subject of humor and cancer  to Hollywood. It's a movie, based on a true story, about two friends in their 20's who have to deal when one of them gets a cancer diagnosis. I haven't seen it (yet), but it looks very funny, and the humor is mixed with fear and anxiety and sadness -- all of the things that come with cancer.

Of course, I see this "trend" as being a very good one. As I've been saying since the beginning of this blog, almost 4 years ago, humor is too important a weapon to put it back in its sheath just because the opponent is cancer. And if a movie gets popular enough that more people can see that -- can see that a cancer joke doesn't mean you laugh and then quickly stop and look around, embarrassed -- then I think we're making progress.

Friday, October 7, 2011

No Velcade for Follicular?

The makers of Velcade have withdrawn their application with the FDA to approve Velcade in combination with Rituxan as a treatment for Follicular NHL.

This really isn't all that surprising. I wrote a few months ago about the very disappointing clinical trial that had been conducted on Velcade, one that found that Velcade + Rituxan added only about 2 months more to the progression-free survival for fNHL than straight Rituxan did by itself. It's unlikely doctors would start using this combination, given the potential side effects compared to those of straight Rituxan. The risk just isn't worth the relatively tiny reward.

Velcade won't go away forever -- it's still very effective with some other types of lymphoma. Apparently, the makers might start focusing more now on the more aggressive Diffuse Large B Cell Lymphoma. Plus, Velcade still has a chance to do well with some other combinations. This article from August talks about the possibility that Velcade may still be important for Follicular NHL because it makes other chemotherapies work better. If that's the case, then the studies that look at Velcade only on its own, or Velcade in combination with a non-chemo treatment like Rituxan, would of course not be as successful.

So, the bottom line seems to be, we probably haven't heard the last of Velcade yet. It's just too good in theory, and too successful in practice on other NHLs, to abandon completely at this point.

Wednesday, October 5, 2011

Cool Triathlete

ESPN has a companion website called EspnW, geared toward women athletes and sports, and on that site has a video series called "Journeys and Victories," which highlights inspiring women athletes.

Last week, they featured a woman named Maureen McGowan. She's a Hodgkin's Lymphoma survivor who joined Team in Training (a fundraising arm of the Leukemia and Lymphoma Society), who helped her train for a triathlon. Very nice video.

But there's a personal connection to this story: two months after Maureen finished treatment, her brother Don was diahnosed with NHL. Don't wife Tess is a member of my online support group (as a caretaker, not a patient). Tess is the one who alerted us about the ESPN video.

Below the video, you'll see an interview with Don, who talks about how inspiring his sister is.

It's always nice to see someone who fought and won, and even nicer when there's a more personal connection, even a remote one.

Monday, October 3, 2011

Watching and Waiting Still OK?

The whole issue of Watching and Waiting is still one of the most controversial among Follicular NHL experts. The idea behind it, as it was explained to me, is because there are a limited number of treatments available for fNHL, so if a patient doesn't have symptoms and is living a relatively normal life, there's no reason to give treatment ("Do no harm," as Dr. R says), saving those treatment options for later. Some say it's still a valid approach to take with newly diagnosed fNHL; others say it's unnecessary, given the number of treatments available now to Follicular patients. Given my experience (two years -- exactly -- watching and waiting), I'm a pro-W & W kind of guy.

I saw this link posted on Facebook over the weekend: an article from last June's Oncology Times, called "Follicular Lymphoma: Is ‘Watch and Wait’ Still a Reasonable Strategy for Patients with Asymptomatic, Low-Tumor-Burden Advanced-Stage Disease?" It features two lymphoma specialists, each taking a side: Dr. Morton Coleman advocating for its usefulness, and Dr. John Leonard arguing that it's no longer necessary.

What makes this debate a little bit different and interesting is that the two specialists looked at the data that came from the same study, one in which some patients watched and waited and others were given Rituxan. The pro-W & W side says that the Rituxan recipients so far have not faired any better than the waiters, in terms of overall survival. And given the cost of treatment and dealing with side effects, there's no justification.

The pro-treatment specialist points out that while there is no difference in overall survival, there is a big difference in progression-free survival -- the time it takes until the next treatment (or the initial treatment for waiters), and that some people go many years without treatment with just four rounds of Rituxan. Furthermore, for patients with high anxiety, immediate treatment can be a big help.

The bottom line to all of this? Still no consensus. Like most of Follicular NHL, treatment stratgies are decided on a patient-by-patient basis.

But all that discussion is good anyway.

Saturday, October 1, 2011

Telling Patients

A quickie for today, as I deal with a computer problem and a day full of activity:

A video from the NCCN, The National Comprehensive Cancer Network, from Dr. Samual Silver, Director the cancer center at the University of Michigan and a lymphoma survivor himself.

In the brief video, he talks about how being a cancer survivor changed the way he approaches the task of meeting with a newly diagnosed cancer patient. It's a lesson that all doctors can learn (and most certainly the GP who gave me my diagnosis): you might deal with this a lot, but it's very likely our first time in this sitauation.

As the brilliant Louis CK wrote, "It's called empathy. Trying to understand people who aren't the same as you. You should try it sometime."