More Personal

A timely follow-up to the last post on Personalized Oncology:

Cornell's Lymphoma Department has a blog called "New Developments in Lymphoma," which I have linked to in the past. Their lymphoma experts take turns explaining recent research on lymphoma, usually very clearly. It's a nice blog.

Monday's post is called "Lymphoma in the News: Two Important Studies Take Us One Step Closer to Personalized Lymphoma Therapy." As the title indicates, it describes two recent studies that move us toward the kind of personalization that were talked about in the podcast I linked to on Sunday.

As I said, the Cornell blog does a pretty good job of explaining things in clear terms, so I won't get too much into the content. But I will give a brief summary:


Diffuse Large B-Cell Lymphoma (DLBCL) is the most common aggressive NHL. The standard of care for DLBCL is R-CHOP, which often works, but not always. New research shows us that DLBCL is actually a three different lymphomas (or sub-types of DLBCL). There's some speculation that once the sub-type is identified, it might be easier to target different treatments that would be more effective. This is, of course, the essence of personalized oncology.

The first study they look at is described as "groundbreaking": It discusses the sequencing of the genes of lymphoma cells and compares them to patients' normal cells. Doing so identifies 109 potential mutations that result in lymphoma. The second study also identifies mutations, finding 26 that had never before been associated with cancer.

The practical benefits of these studies are a ways off; nobody has any treatments that were just waiting for the right genetic mutation, or anything like that. But, as the blog post states, the studies do show how quickly we are using information from the Human Genome Project to identify possible causes of difficulties. Knowing those causes should make it easier to create targeted treatments -- hopefully in the not-too-distant future.

Personalized Oncology

Patient Power, the excellent website founded by Andrew Schorr, that provides video and podcasts geared toward educating cancer patients, has a new podcast called "Personalized Oncology: Where Are We Now?"

The podcast features an interview with Dr. Tony Blau, an expert in personalized medicine from the University of Washington, who gives an update on the whole idea of "personalized medicine" as it relates to cancer.

Basically, personalized oncology is based on the idea that as we look more and more closely at cancer's genetic makeup, we can see that, in some ways, each individual patient's cancer is unique. That is, not all Follicular NHLs have the same genetic makeup, even if the cells look the same under a microscope during a biopsy. Mine is different enough than someone else's that it  might explain why a treatment works for me but not someone else. So personalized oncology would have us look at our cancer cells' genes and make decisions for treatment based on what was found on that level.

Several cancers already have tests that let this kind of thing happen, allowing an oncologist to recommend one treatment over others.

The interview doesn't so much get into individual cancers or treatments, but more into where the state of the field is, how personalized medicine affcets patients, and how it can empower us as patients. That last part is pretty appropriate, given that it's coming from Patient Power.

It's a little vague, but given how detailed it could have been, it's an interesting 13 minutes. (Of course, if it had been as detailed as it could have been, it would been about 15 hours long....)

More on The Leukemia Study

This is almost 2 weeks old now, but I had to delay posting it while I expressed my anger at ABC News. I don't think the delay hurts it any, since it discusses something that I rought up over a month ago, anyway.

It's from the New York Times Health section, and it's called "An Immune System Trained to Kill Cancer." It's basically an extended explanation of the small study that caused such a big stir recently, where three leukemia patients had their own T cells manipulated to fight off their cancers.

It's worth a read. More detail about the patients, more explanation on how it worked, and more reason for thinking this could be something really special.

Still Not a Genius

Once again, the MacArthur Foundation announced its "Genius Grants" recipients, and once again, I was not on the list of winners.

As I have said in the past, I am at peace with the fact that, like most geniuses, I will not be recognized as such in my own lifetime. That doesn't make it right, of course.

Even worse, the list includes no outright cancer-related geniuses.

The closest we get is Yukiko Yamashita, a biologist who studies stem cells, those as-yet-unformed cells that somehow know that they should turn into liver cells, or skin cells, or white blood cells. Her work does not focus specifically on cancer, but it does have implications for cancer research. It may help us understand why and how stem cells divide, and more importantly, how and why they know when to stop.

Another indirect cancer genius is Melanie Sanford, who, like Yamashita, is from the University of Michigan. She is described as an "organometallic chemist," which means she finds ways to bond metals with carbon, which makes the resulting compounds more easily used to develop new drugs (and may be more environmentally friendly as well). Her work could have implications for the development of cancer drugs someday.

There are a few other geniuses there that I like: the poet Kay Ryan, whose work I admire, and the radio producer Jad Abumrad, whose show RadioLab is very cool. Lots of other artsy types in there, too, which I suppose is a decent third prize behind my getting one on my own and someone getting one for a cancer cure.

I'll need to up my brain power for next year.

What the Hell Does ABC News Have Against Cancer?

I saw a post this morning on a blog called Med Page Today, titled "Good Morning America's Flawed Prostate Cancer Awareness Month Segment." I'm amazed at the criticisms of the blogger (Gary Schwitzer, who writes about how health issues are covered in the media), and how close they came to what I wrote about a few days ago regarding an NHL story on ABC News' website.

The GMA segment features Robin Roberts interviewing former Florida State University football coach Bobby Bowden about his recent revelation that he was treated for prostate cancer in 2007. Bowden says he didn't reveal it then because other teams would use it against him in recruiting ("Don't go to FSU, their coach has cancer. He'll be dead soon.")  That's a perfectly legitimate reason. Roberts, a well-known breast cancer survivor, went public while she was still in treatment. Also a legitimate approach to letting people know. We all need to deal with our cancer in the way that makes the most sense to us.

The blog post, though, criticizes GMA (an ABC News program) for how they dealt with this interview. Bowden came on because September is Prostate Cancer Awareness Month (and Lymphoma Awareness Month -- that's OK, we can share. Too many cancers for everyone to get their own month, unfortunately).

Bowden is being compensated (as Roberts pointed out in the interview) for this awareness work, by a group called On the Line. On the Line is sponsored by a couple of prostate cancer drug companies, and by another group that pushes for active treatment for prostate cancer.

The blogger sees this as a conflict of interest: like some lymphomas, some prostate cancers are indolent, and are dealt with by watching and waiting. Many men are diagnosed after 70 with a slow-growing prostate cancer, one that never gets to the point of needing treatment. So the push to get tested and treated means potentially unnecessary pain, time, and cost for these patients.

Here's an example of the blogger's problems with the way this 5 minute segment was handled:

[Bowden says]"So anyway, he was telling me I had cancer in my prostate, and this is what we need to do and what do we want to do? And they decided what to do and did it the next day and then six months later they checked up and everything was gone, so I'm a survivor."



Nothing about what the treatment was like.

Nothing about shared decision-making. (Doesn't sound like much shared decision-making took place: "...and they decided what to do...")

Just snap, crackle, pop: diagnosed one day, treated the next day, apparently a piece of cake. Nothing about side effects of treatment -- a great source of concern to most men.

I find disturbing parallels between all of this and the web piece on NHL that I discussed a few days ago: half truths about the nature of the disease; missing information about how different types behave differently; statistics that alarm and panic, and don't tell the whole story; an opportunity to give hope that gets lost in a quick-hit piece that's meant, apparently, to actually provide hope (?).

Cancer is a complex, complicated disease -- its biology, its treatments, its emotional and psychological effects. Maybe it's just not meant to be dealt with in formats like those put out by ABC News. At the very least, though, if they're going to do this halfway, they need to provide additional information about where people can go for trusted, objective information. Awareness is great -- but keep it balanced, provide some context, and for cryin' out loud, don't take hope away while you're doing it.

World Lymphoma Awareness Day

In addition to September being national Lymphoma Awareness Month, today is also World Lymphoma Awareness Day, sponsored by the Lymphoma Coalition (LC), an umbrella group for Lymphoma-related organizations around the world.

The LC understands that many people (including some doctors) don't know as much about the lymphatic system as they should. One of the LC's ways of increasing awareness is through their annual Know Your Nodes campaign, which lets you take a quiz to measure how well you know what your lymph nodes are and what they do for you. (They're one of those things that you don't really think much about until they, you know, become cancerous. Or something.)

Another part of the LC's campaign is the Beacons of Hope Awards, given to people who raise awareness of lymphoma.

I've been well aware of both of these excellent programs before (I've linked the Nodes quiz in the past), but I have to say, I'm not familiar with a mysterious little mascot that I've seen for the first time on the LC website. I can't find an explanation anywhere, other than an invitation to "look on your cell phone for Node," and then this picture of this guy nearby, giving information about lymphoma in a bunch of different languages:

So, is this "Node"? A multilingual, talking lymph node in Chuck Taylors, carrying an Olympic torch (for some reason)?

That's awesome. Even better than Chemo the Clown, or whatever name the clown went by who helped celebrate a local cancer center opening last year.

Be warned: Node the Talking Lymph Node may become a regular commentator on Lympho Bob....

In the meantime, take the Know Your Nodes quiz, and make yourself a little more aware.

NHL in the (Flawed) News

I'm going to do something I don't usually do -- in fact, I don't think I've ever done it in the blog.

I'm going to mention someone who died from lymphoma.

The reason I usually avoid writing about it isn't because I fear it, or it upsets me, or I'm trying to avoid it. But Lympho Bob has always been about providing information -- whether it's about me personally, or about lymphoma and its treatments more generally -- and by providing information, providing hope. Writing about people who have died just doesn't usually provide hope.

Sunday, a young actor named Andy Whitfield died. He was 39, and had a very aggressive NHL, Peripheral T-cell Lymphoma.

I don't want to dwell on Whitfield dying. Information and hope, right?

Sparked by Whitfield, ABC News put out a story called "Non-Hodgkin's Lymphoma Kills Nearly 20,000 Each Year." What should have been an opportunity for information -- especially during Lymphoma Awareness Month -- turned into a mess of misinformation. Information should give hope. This story doesn't.

It contains statements like this: "The Lymphoma Research Foundation estimates that 332,000 Americans are currently living with this type of cancer  that kills quickly –  only 63 percent live  five years after diagnosis, according to the Lymphoma Research Foundation."

Bull.

The problem is, NHL is not one disease. It's at least 30 different diseases, maybe even over 60, by some counts. To say of NHL "this type of cancer that kills quickly" is just plain wrong. Some types of NHL, unfortunately, are very aggressive, and can outrun attempts to treat them. But that's some types, certainly not all. A large number are indolent, slow-growing, my own included.

As for the 63% five-year survival: that's exactly the kind of statistic -- misleading -- that would throw me into a panic. The percentage means nothing when disucssing NHL as a whole. And, as I've written before, it doesn't mean much even when discussing a particular sub-type, because so much depands on the context. For instance, the age when a patient is diagnosed,  or the fact that lymphomas often come about when someone has another disease. Or, maybe most importantly, that the 63% statistic is for Overall Survival Rate: it measures how many people die after diagnosis, not how many people die from lymphoma. It includes heart attacks, bus accidents, and every other cause of death.

The article states, further on, "While non-Hodgkin’s lymphoma can strike at any age, lymphomas as a whole are the most common childhood cancers, whose symptoms include chills, fever, weight loss and enlarged lymph nodes."

First of all, not all NHL types are symptomatic. Those listed symptoms are very common, but they don't tell the whole story. Some people have no symptoms; others have those symptoms, but they don't have lymphoma.

Second, the discussion of childhood cancer seems to want to lump hodgkins and non-hodgkins together (which could bring us up to about 70 different diseases), to create "lymphomas as a whole." Even then, the article gets it wrong: leukemias, not lymphomas, are the most common childhood cancers.

This horrible article concludes with a discussion of treatments:
"Right now, NHL patients have three treatment options: chemotherapy, radiation, therapy that targets specific cancer cells while leaving normal cells unharmed, but new treatments are in the pipeline. One new therapy consists of giving patients a high dose of chemotherapy, along with stem cells that can potentially replace the cells destroyed by the cancer treatment. Another experimental therapy uses the body’s immune system to fight the cancer."


Radiation is not common for NHL; as a systemic cancer (one in which the cancer cells travel through the body, rtahre than staying in one place as a solid tumor), traditional radiation won't work. And stem-cell transplants are far from "new." The earliest versions of them took mplace in the 1950's.

The more I read the article, the more it makes me angry. During a time like Lymphoma Awareness Month, this is exactly the kind of crappy research job that does the exact opposite of what we want to happen. And when something good (a chance to educate) might come from something bad (like Andy Whitfield's death), this is what we get?

Shame on you, ABC News. You blew this one, bad. At best, what should give people information could end up taking away their hope. At worst, by relating this to Andy Whitfield, you sullied his memory.

9/11

It's after 8pm as I write, and this sad day is almost over. The 9/11 coverage all week has been pretty much unavoidable, and I've been torn between just not wanting to think about it and not being able to look away from all the videos and photos and tributes.

Lots of connections between 9/11 and cancer -- too many, starting with the cancer that has been showing up in responders (and for which they are not getting the help they should be getting, which is shameful).

I have mixed feelings, too, about comparing a personal tragedy to a national tragedy, but like I said, there are too many connections already. Betsy de Parry, Lymphoma Rock Star, wrote a column this morning for AnnArbor.com called "Cancer: 9/11 Every Two Days," in which she recounts how she spent September 11, 2002 -- ina  hospital, getting RadioImmunoTherapy for her NHL, which had already turned its nose up at two courses of chemotherapy. Betsy points out, in arguing for more cancer research funding, that about 1500 people die from cancer every day, which equals the same number of deaths as 9/11 every two days. We need to do more.

I was recently trying to write about the experience of getting a cancer diagnosis, and the whole idea of "knowing exactly where you were when you heard" came to me. It's kind of generational: for some, it was hearing that Kennedy was shot. Then, hearing the the shuttle had exploded. Then, hearing about the Towers. But whatever the case, getting the cancer diagnosis is similar: you remember exactly where you were, and the sense of tragedy and loss is about the same, if not worse, because it feels like a whole nation's sense of loss is compressed in your own single lonely gut.

It's unfortunate that tragedies make our minds go to more tragedies, but I guess that's just the way this day has to be. Not that it was a bad day, or a hard day. Just one of those days you want to be done with.

My wife has been struggling with the day, too, all week, looking at the same images we've all been looking at. She finally came to a kind of realization about her feelings today, and she wrote on Facebook this afternoon: "My hope this day for all those who lost loved ones 10 years ago is that they may remember and cherish the memories they have of their loved ones' lives, rather than their deaths, that they may relive those good times over and over again rather than relive the horrible tragedy that was only one small part of these people's lives--and not what they should be remembered for."

Which is a nice reminder about any tragedy -- national or personal: we need to not dwell on the one bad moment, but about happier yesterdays, and brighter tomorrows.

Which I realize is kind of cheesy. But I can't end the day without some kind of hope.

Viruses (The Good Kind)

This news story came out just about a week ago, but didn't receive a whole lot of attention. My mom alerted me to it, and then I heard something about it briefly on the radio. Not sure why it's not generating more excitement....

As reported by Yahoo! News, viruses can potentially be used to kill cancer cells. In a small study (23 patients), researchers manipulated a virus used in the smallpox vaccine so that it could target cancer cells. Cancer cells have a defect that makes them more susceptible to viruses. This virus makes its way into the cancer cell, where it basically becomes a parasite, replicating (as viruses do) and taking over the tumor, killing it. The virus, though, apparently doesn't harm other, healthy cells.

In the study, eight of the patients patients received high doses of the virus; seven of the eight had the virus replicate in only the tumor, but not in healthy cells; and six had their tumors shrink or stop growing.

This seems like a promising avenue for more research. The study was meant to measure safety -- to show that this virus could be an effective delivery system. The next step will be to figure out what exactly the virus should deliver: what kind of treatment can be attached to the virus. It will likely need to be something genetic -- a gene that can replicate along with the virus (rather than, say, a dose of chemo, which would run out once the virus starting reproducing).

Promising. Lots to do, still, but it seems like once a first step like this is figured out, things pick up fairly quickly.

Runner's World

I'm just now seeing it, but Runner's World magazine did a special issue on Running and Cancer in July. The links to the articles are online, here.

I stopped subscribing to RW a couple of years ago. Not because they rejected the piece I sent in about running and cancer soon after I was diagnosed.  (It was good, too. Real heart-strings type stuff, like this:

These days, when my oldest gets out of bed by six a.m., he does his best to be quiet. But even from the basement, over the whoosh and pounding of the treadmill, I can usually hear his footsteps, walking over to the computer in the room above my head.



A few days after my diagnosis, I overheard him comforting his younger brother. “Dad’s fine. Really. I hear him on the treadmill in the morning. He’s still running.” That seemed to comfort both of them.


I think about that now as I go to the treadmill in the early mornings.


My bad racing habit has always been that I get too excited and start too fast, and have no kick at the end. So my mantra during races has always been “Run your own race -- Don’t run somebody else’s race,” a reminder to slow down early.


In some ways, we always run for ourselves. But sometimes, we run for others, too.)


No, I stopped subscribing because the articles were getting a little repetitive, and it seemed like every other month their main profile piece was about a runner who was just not that nice a person, and who I really didn't care to read about.

But the July issue is great, highlighting lots of the good that runners do in raising money for cancer-related causes (including the awesome Team in Training, which raises money for the Leukemia and Lymphoma Society -- read the Runner's World article here).

The RW issue also highlights runners who have battled cancer -- both famous and unknown (though, again, they missed their chance to highlight me) -- by issuing eight different covers with photos of survivors.

Of course, the really important part of all of this is that I'm feeling somewhat revitalized in my running, which is what had me browsing the Runner's World site again in the first place. I'm looking forward to my Saturday runs, and planning to increase my mileage. Having so many friends run in yesterday's New Haven Road Race provided a little inspiration, too, I will admit.

Like a lot of the folks profiled in the RW issue, running is important to me as a way of keeping reasonably healthy, but also as a way of staying inspired.

Follicular Interview

The Boston sports radio station WEEI, along with the Boston sports TV station NESN, have been holding a telethon this week to raise money for Dana-Farber and the Jimmy Fund -- the same organizations that are benefitted by the Pan Mass Challenge.

The two stations have been interviewing lots of cancer patients, doctors, fundraisers, etc. during the telethon, and one interview involved a Follicular NHL patient (Kevin Rose) and his doctor (Arnie Freedman).

You can hear the 12 minute interview here, but I'll give you a couple of highlights:

Kevin's experience was similar to mine: a lump, clearly a swollen node, that wouldn't go away; a doctor who tried antibiotics first; an eventual fNHL diagnosis. The big difference: he went through three needle biopsies, instead of a full, remove-the-node biopsy. As his experience shows, needle aspirations just aren't reliable for fNHL, and for other types of lymphoma as well. The lymphoma cells don't take up the entire node, so it's a literal shot in the dark that you'll find what you're looking for. Still, it was interesting to hear him describe the process.

I like that Dr. Freedman described lymphomas as either "curable" or "pre-curable," since we're getting closer to cures for them. (Not, like, 5 minutes away closer, but we're getting their.) Follicular is in the "pre-curable" camp, of course.

I liked Dr. Freedman's enthusiasm about Rituxan, and about the great changes it has meant for fNHL patients in terms of survival, longer remissions, and quality of life.

I liked Kevin's description of getting the Rituxan -- he'd receive a bag of it on Friday mornings, and then go back to work for the afternoon. The radio hosts (Mut and Merloni) teased him about going back to work. They thought he should have just gone home for the rest of the day. I'm with M & M -- I went home and slept on those afternoons.

Overall, a very hopeful and enjoyable interview. And a very successful telethon, too.

Lymphoma Awareness

September is Lymphoma Awareness Month.

Google it and you'll find sites like this one, which provide some information about lymphoma.

You'll also find sites like this one. This type of site used to upset me, because they seem to be trying to capitalize on lymphoma awareness just to sell t-shirts. But when i think that way, I have to stop myself, and remind myself to do what I do whenever someone makes what seems to be an insensitive remark about cancer: give them the benefit of the doubt. Sites that sell lymphoma shirts almost always make clear that they do so to benefit lymphoma research, so I'm OK with them. Plus -- if you want to make people aware, how else are you going to do it? Seems like encouraging them to stare at your chest is not a bad choice.

On top of all that, there are some great lymphoma shirts out there. I like this one from Hope and Dreams:

Funny, but with that impatient edge that lots of us have. This one from Gifts for Awareness is very cool:

It's meant to be worn by people who run or walk for charity, though it would have a double meaning for me, given how important running has been for me as a way of measuring how healthy I've been through all of this.

Finally, I have to say that I liked this one from Zazzle at first, but only because I misread it. The shirt says Powered by Hope," with a lime green computer on/off putton. But the page describing it says "Lymphoma Powered by Hope," and when I first glanced at it quickly, I thought it just said "Lymphoma Powered," which is kind of weird, but also kind of true, because if your cancer serves as a kind of inspiration for yourself, a way of pushing yourself, then you really might be powered by lymphoma, in a sense. But those shirts probably wouldn't sell well, because you'd need to go into a big long explanation about why they aren't as weird as they seem.

So, the point is, do what you can to make others aware of lymphoma, what it is, who has it, and how they can help. If nothing else, send them here. I'll tell them plenty.