Misinformation

I was doing a little research this morning, and while I was in the Yahoo! home page, I saw a link for "Health." Curious about what they had to day about cancer (I'm always curious about such things), I clicked some links until I found their page on Lymphoma.

It's horrible.

About a year ago, I wrote about a story that ABC News had done on NHL, in response to an actor dying. It made me very angry -- it was misleading, squished all 40 or so types of NHL together, gave some downright dangerous misinformation, and just generally did a horrible job or informing anyone about NHL.

The Yahoo! page is worse, in some ways (though not all).

They make the same mistake of conflating different types of NHL, but even worse, they squish Hodgkin's and Myeloma in there, too. They have links to the individual general types of lymphoma, but they're not much better: a list of symptoms.

The lymphoma page itself has just a weird mix of information. There is mention of the different types of NHL ("at least 10"), and their different classifications, but even here, there are problems:

"grouped (staged) by how aggressively they grow: slow growing (low grade), intermediate growing, and rapidly growing (high grade); and how far they spread."

 First, this is a misuse of the term "staged," which does have to do with "how far they spread," but not with how fast they grow. The "low grade/high grade" terminology is old; the preferred terms now are indolent and aggressive.

Under the "Diagnosis" section, the procedure that gets the most description is the Lymphangiogram, "an x-ray of the lymphatic system." True enough, but generally not done anymore. In fact, I've never heard of anyone getting one; they've been pretty well phased out, replaced by CT and PET scans.

The section on "Treatment" is devoted to acupuncture, hypnotherapy, and guided imagery. his comes after a paragraph saying that lymphoma is life-threatening, and you need chemotherapy and other traditional treatments. But then we get the alternative therapies for pain management. Eventually, we get the "allopathic treatments" -- that is, traditional Western medicine. Chemotherapy. Radiation. Bone Marrow Transplants.

Several problems here: First, radiation is used much less often in lymphoma -- at least in NHL -- than in other cancers. It's just too hard to hit a moving target, and that's what you have with a blood cancer.  Second -- no mention of Rituxan? When was this written, in 1997?

Guess what: I think it was. Because the last section lists the References for this article, and this is what we get:

BOOKS

Dollinger, Malin, et al. Everyone's Guide to Cancer Therapy. Kansas City: Andrews McKeel Publishing, 1997.
Fauci, Anthony, et al., eds. Harrison's Principles of Internal Medicine. New York: McGraw-Hill, 1998.
Murphy, Gerald P. Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment, and Recovery. New York: American Cancer Society, 1997.

PERIODICALS

"Alternative Cancer Therapies Popular Today." Cancer. 77, no. 6 (March 1996).


Wow. The most recent thing you have on lymphoma was written in 1998?  Yahoo! was incorporated in 1995, so it's possible this article hasn't been updated since 1998. Is it seriously possible that this article hasn't been updated in 14 years? Yes, I think it is indeed possible.

My only consolation is that few people have probably read this, anyway.

At least I hope so. But what if there are more people who turn to Yahoo as their information source? Yes, unlikely; they'll more likely to go to WebMD or even Wikipedia. But what if they don't?

The internet is a wonderful thing. But for a page that purports to try to help people -- on a site that is trying to focus more on content -- this is inexcusable.

Please, please look to multiple sources for information. Go to Lymphomation.org. Join a support group. And don't believe everything you read -- especially if it's 14 years old.

"Cancer is Funny..."

"...Cause People Die."

Wait -- what?

Yeah, that's the name of a Facebook page that popped up on my feed this morning: "Cancer is Funny Cause People Die."

It certainly had me curious. As long-time readers know, I'm a big fan of cancer humor. So I tried to do a little investigating, to see just what was going on with this page. Is it some kind of twisted-humor "cancer support" page? Maybe a way of making people see the positive in a bad situation? Kind of an odd way of doing it, but whatever...

The "About" link on the page, where I would expect to find such an explanation, was blank.

A google search provided a little history, as well as some reactions: the page seems to have been set up by a "troll" -- someone who is deliberately offensive or provocative, who "trolls" for reactions. The internet, with its anonymity, makes it easier to do that without consequences. Apparently, the same person also has Facebook pages that make it clear that AIDS and battered women also tickle his funny bone.

I don't recommend visiting the page, especially if you are easily offended. It's basically a series of people using bad language to let the person know that they find the page offensive, and then other people using similar language to respond to them. There are a few comments that don't include the offensive language, but convey similar feelings -- written by people with cancer, or who have lost someone to cancer, who don't find either the Facebook page or the disease to be all that funny.

So, as I said, I'm a big fan of cancer humor. But let's be clear -- while cancer is funny, death isn't. There's a difference between laughing at the disease and laughing at its ultimate effects. Jokes about hair loss, radioactive bodily fluids, and gastric distress from Barium beverages? Funny. Leaving behind a family? Not so much.

But really, this isn't even about cancer (or AIDS, or battered women). It's about the intersection of information, attention-getting, and free speech.

On the one hand, we are all entitled to some level of free speech. The page itself isn't really going to physically harm anyone, the way the classic shouting of "Fire!" in a theater might harm someone. Emotionally scarring? Most definitely, for some people. But probably half of what is online will be offensive (if not scarring) to most people. It's rough out there. And if you are easily offended, the internet is no place to be, anyway.

But having that free and open forum that the internet provides is a necessity. Who would otherwise be the one to decide what is offensive? And what would the consequences be? There was a time -- not too long ago -- when no one talked out loud about cancer, because it made people sad and potentially offended them. Who wants to hear about cancer of the breast, the colon, the testicles? What if we lived in a world where the internet existed, but we weren't allowed to search for information about those things, because people didn't talk about those things? Where would we be?

Back in 1930, that's where. (That's before modern chemotherapy, by the way.)

So, we need to take the bad with the good. The free flow of information will result in some wonderful things. But it will result in a lot of crap, too -- misinformation, superstition, and trolling. In a world of 900 million Facebook users, a few of them are going to want to do something to stand out from the rest. Some will start pages like "HOPE for Lymphoma." Others will start pages like "Cancer is Funny...."

If you're feeling active, then search for the pages that are trying to shut down the "Cancer is Funny..." page. Join them. Let your voice be heard. Maybe Facebook will shut it down. My guess is, though, that the owner of the page will start a new one.

The other option is, of course, to ignore it.

And for the record, I'm not offended by it. I've seen dozens more offensive things on the internet. (In fact, I've seen a few of them in the last 24 hours.) It doesn't inform me, and it doesn't make me laugh. So why bother?

Happy Birthday, P.W.

I have to acknowledge a birthday today: Paul Reubens, whose most famous character is Pee Wee Herman, turns 60 today. No cancer connection -- I just really, really love the movie Pee Wee's Big Adventure.

I saw it four times during the first two weeks it was in theaters. My mom bought me a talking Pee Wee doll for my 21st birthday (it's on a shelf in my office. Students regularly comment on it). I spent way too many Saturday mornings watching Pee Wee's Playhouse in college.

And now, my kids are fans. Pee Wee brings them as much joy as he brought me.

Happy birthday, P.W.

Coping

Suleika Jaouad, the young leukemia patient who writes the column "Life, Interrupted" for the New York Times, has written a bunch of great pieces lately. The one from last Thursday especially struck me .

Jaouad is very wise, especially for someone in her early 20's. I don't know if adversity brings that kind of wisdom, or if she's just an old soul. Whatever the case, she has a very nice perspective on her disease and her life.

This column is fairly straightforward -- one of many out there (as she herself notes) that gives advice on dealing with cancer. It's called "Six Ways to Cope with Cancer." And, as promised, she offers six ways of coping.

You can read the column for yourself, but I want to comment on a couple of her suggestions:

"Find Your Community." A friend of mine who moved to another state told me she had a hard time "finding her tribe." I liked that phrase -- it signals a deep connection between yourself and the people you interact with. Important for all of us, but especially for cancer patients. I think it's vital to be able to talk with someone who knows exactly what you've been going through, and who can offer some advice for getting to the other side. I was lucky enough to find my own tribe pretty soon after I was diagnosed, an online support group that I still belong to, and that has been a source of information, support, and inspiration for almost five years. Jaouad says she has found a community online, too, through Facebook and other sources, but she still values face-to-face interaction most of all. So be it. For me, with my kids' busy lives (which I wouldn't give up for anything), the idea of driving downtown at night to get to a support group was just too stressful. Being online works. The point is, find your tribe. Don't do it alone.

"Be Kind to Yourself." She describes some of the physically difficult days she has, side effects of her treatment. So some days she sleeps into the afternoon. Some days she has "chemo brain," and is forgetful. She tends to beat herself up for these things, seeing them as signs of failure. We all need to give ourselves permission to be cancer patients, to have bad days, to remember that things aren't what they used to be (and to hold out hope that maybe someday they will be that way again). It's OK to have a bad day, physically and emotionally. (And it's also nice to have a community that can pick you up a little when it happens.)

Finally, "Set Goals Unrelated to Cancer." I think, for me, this was the most important, and the hardest to get to. Naturally, when cancer hits, it makes us focus on little else but the disease. For someone as young as Jaouad, that was probably especially devastating -- a whole lifetime of dreams planned out, and put on hold. But it's not just the 22-year-olds that have those feelings. They are there whether we're 40 or 70. And it's not just big life plans we hold off on, either. It can be day-to-day things. We can't even plan a week ahead, wondering if the way we feel that day will get in the way, or if a sudden need for a treatment will spoil everything. As I said, it took me a while to get past those feelings. Eventually, I thought, " If I say No to this little thing, and then to the next little thing, when will it end? I'll eventually talk myself into not getting out of bed in the morning. If I plan something, and I can't do it, the world isn't going to stop without me. The work will get done anyway. The movie or the festival or the baseball game -- they'll all happen whether I'm there or not. So why not move on with life -- until I can't?"

A wise young lady, that Jaouad. As she said, lots of people give advice to cancer patients. And the advice that she gives really isn't all that original. But it's nice to have a reminder every now and then.

Lance

Lance Armstrong has announced that he will not fight accusations that he cheated during the years in winning his Tour de France titles. The U.S. Anti-Doping Agency announced it was erasing 14 years of race results, including his Tour de France victories. Armstrong released a statement expressing his frustration with the process, which he sees as unfair, one-sided, and in violation of the organization's own rules.

It's been interesting to see the reaction of the cancer community (or, at least, my chunk of it). It has been very much pro-Lance. For the most part, people seem to not care about how he got to where he got, only that he has been such an outstanding advocate for cancer patients. I've read stories about his personal interactions with cancer patients -- personal visits, cards and letters, phone calls. He's been such a role model for cancer patients. It's best summed up in this clip from the comedy Dodgeball: A True Underdog Story. The hero, Peter, has quit on his dodgeball team, and as he runs away, he meets Lance at an airport bar:


Lance is certainly someone who has something to teach us about quitting.

On the other hand, some other people in the cancer community are frustrated by what they see as Lance's quitting -- not fighting the charges. But mostly they are in his corner.

So, did he do it? Who knows? Not the USADA, it seems, since they are going on testimony and not on the samples that have been tested during his career. Kind of hard to be definitive when the physical evidence isn't there, though criminal trials are certainly won and lost on witness testimony alone.

Interesting perspective from one cancer survivor, who tried to post a comment on the USADA Facebook page (which he says was erased 4 times): Lance, like many survivors, had so much poison pumped through him during his treatment that there's no way he'd put more into his body, knowing that some of them could give him cancer again. Interesting....

(It looks like the USADA has stopped erasing comments on their Facebook page. About 300 of them in the last hour -- all negative.)

My only personal connection with Lance is through his book, It's Not About the Bike, which I read a couple of months after I was diagnosed, on the recommendation of my brother the long-distance bike rider. It was indeed an inspiration. I remember especially one scene in which a doctor tells him how extensive his cancer is, and how it will require an aggressive approach. The doctor tells him something like, "I'm going to kill you every day and put you back together every night." I think Lance ended up finding a different doctor, but I was struck by his reaction, which was to keep a level head even in the face of such a horrific-sounding approach to treatment. He made good decisions, and kept his eye on his goal -- much like he rode his bike.

I guess I like to think he continued to make good decisions, even as he strove to meet his goals.

Not sure where this is going to end up. Will other agencies strip him of titles? (Does the USADA even have the authority to strip him of titles?) Will the USADA's credibility take a hit? Will that an effect on other sports that it is involved with? Questions about Lance seem, to me, to be less uncertain: Will he continue to raise money and otherwise support cancer patients? Absolutely. Will he be able to be as effective? I think he will. Is his credibility lessened within the cancer community? Sure as heck seems not to be.

Despite Lance saying he's done talking about, and is moving on, I have a feeling that this isn't over. I'm not saying he's going to be vindicated, necessarily, but I'm guessing Lance isn't the only one who has his credibility called into question when all is said and done.

Survivor

Call me old (my kids do all the time, the little punks), but I still love the show Survivor, which hasn't been culturally relevant since about 2003. I've always been intrigued by its "social game" -- people figuring out how to present themselves to others, how to align themselves with others for their best advantage, and how to keep from pissing other people off. It's fascinating. I've never missed a season.

And the upcoming season looks like it will be a good one. It will feature 18 contestants, fifteen newbies, plus 3 alumni who couldn't finish their previous games for medical reasons. There will be, naturally, the young beauties, both male and female, and the surprisingly competent older folks. There will no doubt be a wild card, who might snap at any moment, or who might insult everyone, but who will last long because it's always good to have someone crazy and hated going up against you at the end.

But there are some intriguing types, too, in the form of two celebrities. One is Lisa Whelchel, who played Blair on Facts of Life so many years ago. ("When the boys you use to hate, you date, I guess you best investigate the facts of life.") It will be interesting to see how she uses her celebrity, or doesn't, and how the older folks distinguish between her TV persona and her real self.

The other celebrity is Jeff Kent, former major league second baseman. He won the National League MVP in 2000, narrowly beating out teammate Barry Bonds, who, in turn, barely beat Kent at being the biggest jerk on the team. So it will be interesting to see how he deals with others. Again, the older contestants will be key here, because the youngsters will likely have no idea who the hell he is.

But the contestant I will be pushing for is a guy named Artis. As his intro video explains, Artis is a longtime fan of Survivor, but more importantly, is an actual cancer survivor. If he can keep that quiet for a while, he'll do great, because he seems like he understand Survivor history, and he knows he needs to present a particular persona. (Why hide the fact that he had cancer? Because other contestants will be afraid that it will win him sympathy in the end. That kills most people early on.)

As far as I can remember, this is the first time a cancer survivor has been a contestant (though a winner, Ethan Zohn, was diagnosed with Hodgkin's Lymphoma after he played).

Can't wait for the premiere in a few weeks. Go Artis!

Dr. Sharman -- Part 2

A few weeks ago, I posted a link to a blog by Dr. Jeff Sharman; I was very impressed with the entry, which focused on how he treats lower-risk Follicular Lymphoma. It was clearly written, provided lots of context and lots of links, and generally did a great job of explaining his approach.

I've finally caught up with part 2, where he discusses his approach to patients with higher risk fNHL.

I am not, officially, in the category of "higher risk," at least not according to the FLIPI scale (as Dr. Sharman explains in part 1), at least not now. But, as he also points out, there is always the risk of transformation to a more aggressive version of NHL, and so it's worth thinking about. (I take issue, though, with Dr. Sharman's understatement: "Occasionally follicular lymphoma takes on a bad attitude and "transforms" into Diffuse Large B Cell Lymphoma (DLBCL)." The "occasionally" seems a bit off, given that, depending on the study, transformation occurs between 15 and 50% of patients. Transformation is too big a fear in fNHL patients to brush it off with that sentence). In addition, more aggressive treatments are worth thinking about because eventually they may become needed, even if things stay relatively low risk. Rituxan stope working at some point.

I liked what Dr. Sharman had to say about the state of chemo for fNHL. Essentially, R-CVP is out. I know it still gets used -- I just saw a post from someone in the support group who is in the middle of treatment -- but it seems like Bendamustine has replaced it as the alternative to CHOP with fewer side effects. According to Dr. Sharman, it seems like Bendamustine is going to be the first choice now, with CHOP reserved for transformation. This sounds very much in line with what I've heard elsewhere.


So, overall, I liked this post a lot. Once again, a very clear summary of the state of the field. Dr. Sharman's specialty is CLL, another version of NHL, but I'll keep an eye on what else he has to say about Follicular.