Hard Rock

Busy day on Monday.

It was Peter's birthday. The family celebrated with him over the weekend, because he and I were in New York City all day Monday. He performed with the All-State Symphonic Band.

It was a really good day. We arrived in NYC at about 10:00, and he and some buddies killed an hour by tossing oranges and apples around in a circle until someone dropped it and then they were out of the game. Doesn't sound like fun, but they had a blast. The band is made up of kids from around the state, and it was really cool to see them all becoming friends so quickly. When they had finished making fruit salad out the apples and oranges by dropping them so much, they had a little impromptu jam session.

They gave an outdoor concert on the plaza at Lincoln Center at 11:30. That was great. They're doing a lot of construction at Lincoln Center, and the construction workers stopped and listened (and even danced a little). The pictures are of Peter and his fellow saxophonists, and of the band with a bit of the city in the background.

After the concert, we all went to the Museum of Natural History and then to Times Square, where Peter and friends hung out at the Toys R Us for an indoor ferris wheel ride and then a game of Mario Kart on their giant wall-sized Wii screen. Finally, we had dinner at the Hard Rock Cafe, where 150 people wished him happy birthday over an ice cream sundae. (I was a little disappointed that it wasn't named for something rock-and-roll related. I would suggest "The U2 Sundae-Yummy-Sundae.") Hanging with his friends in New York -- it was an excellent birthday.

Unfortunately, there were no celebrity sightings this year. Long-time readers may recall that last year, when Peter played in this concert, we went to Planet Hollywood in Times Square for dinner, and Peter saw Snoop Dogg in the bathroom. (That was the day Snoop became the Official Rapper of the Lympho Bob Blog.) We were actually kind of rushed this year for dinner, so I didn't even get to look around at the excellent music memorabilia, other than George Harrison's acoustic guitar. Though I did get this nice shot of a large photo of Angus Young, guitarist for the band AC/DC. I love him because even though he's been playing for AC/DC for about 35 years, and I've been playing guitar for only 9 months, I'm pretty sure I know more chords than he does.

Which is awesome.

AACR

As I mentioned in the last post, the American Association for Cancer Research (AACR) held its annual conference this past week in Denver. It's a huge conference -- about 17,000 people attend every year. They are devoted to rigorous scientific research on all types of cancer, though they seem to me to be a bit broader in what they encourage -- not just laboratory research, but also lots of public health stuff, too.

They're pretty accessible, too (unlike a lot of cancer research outfits), as far as letting people see their research abstracts. You can search online for what was presented at the conference at their abstracts page, which gives summaries of the research projects. There were over 100 presentations on lymphoma of various types (I don't know how many more than 100. That's where I stopped).

I thought I'd share a few of them.

(By the way, I can't link the summaries directly, so you'll need to search for them yourself on the abstracts page.)

One study looked at Follicular NHL in particular, focusing on 281 patients at a cancer treatment facility in Switzerland from 1980 to 2007. They broke the group up into three sub-groups, in 9 or 10 year intervals -- people diagnosed in the 80's, 90's, and 00's. They looked not just at Overall Survival (that is, at how long patients lived after diagnosis, no matter what they died from) but also at Cause-Specific Survival (people dying from fNHL specifically). As you might expect, they found that people in the earlier group (diagnosed in the 1980's) had a shorter CSS than those in the later groups. That's good news: people are living longer with fNHL than before, due to improvements in treatments. I suspect that the numbers will continue to improve -- they simply can't measure survival rates for those diagnosed since 2000. Not enough of them have died yet. (That's a good thing.)

OK, no one wants to think about survival rates (even when it's good news), so I'll give you something a little happier. Researchers from the Yale School of Public Health found that drinking wine helps NHL patients live longer. They looked at 546 female NHL patients over 12 years, and found that those who drink wine moderately had a longer Overall Survival, and a longer Disease-Free Survival (that is, a longer time between recurrences of lymphoma) than non-wine drinkers, and those who drank beer or hard alcohol. The effects of wine seemed to favor patients of the more aggressive DLBCL type of lymphoma, but that won't stop me from drinking more wine from now on.

Good news for those who aren't current NHL patients: those who had been drinking wine for 25 years or more before diagnosis had a 35% better Overall Survival rate after diagnosis. (Not that I'm wishing NHL on anyone, but it's a good excuse to drink some wine -- you know, just in case.)

And let me repeat that again for my brother: beer didn't have the same effect.

There are a couple more interesting abstracts from the conference that I'll share soon.

Two Nice Cancer Links

I talked to my mom on the phone last night, and she hinted that I wasn't posting as often as I had been (or apparently should be), so I'll give you a quickie today.

(Geez, Mom. It's my busy time of year. Plus, I'm still sluggish from you stuffing me with manicotti two weeks ago. Take it easy, huh?)

Two cancer-related (though not specificaly lymphoma-related) items:

******************************

First, an interesting interactive site from the Abramson Cancer Center at UPenn called the OncoLife Survivorship Care Plan. The creators of the site say that they understand that after cancer survivors have been treated successfully, they should have a "care plan" -- something that lets the patient know about the kinds of psychological, physical, relationship, and financial effects they are likely to experience, as well as information about healthy lifestyle changes, genetic counseling, and relapse prevention. The problem, the developers say, is that as important as such a plan is, it is time-consuming to create for each individual patient.

The OncoLife Survivorship Care Plan allows patients to put in some information about their tretaments, and have a Care Plan generated for them. This is then shared with the oncologist and other members of the medical team, and refined as necessary.

Seems like a very useful thing. I'm sure there are oncologists who don't have the time to create such a plan, or who overlook certain things that should be included, and this will be a big help to them. But I also see it as a big help to patients. Sometimes, we just don't know what kinds of questions to ask, and having that plan gives us more to think about.

***********************

Second, a piece about Personalized Cancer Treatments. I've been writing about this topic for a couple of months -- the idea that cancer research is heading toward "personalization." That is, we now know enough about how individuals react to treatments on a cellular level that we can test to see if a treatment is working (or even if it will work before it's ever given to the patient). The idea is to save the time, expense, and pain of a treatment if we know it's going to fail. But having this kind of information might ultimately mean that reserachers can create new treatments based on how they see an individual body react.

For me, what's so exciting about this piece is that it shows how quickly this type of research is moving along. I posted a video about three months ago that showed three NHL researchers discussing current treatments and trends, and they agreed that in 5 to 10 years, this kind of personalization research will be the most exciting thing happening in the lymphoma community. I don't think we'll be doing this kind of personalization testing in the extremely near future, but it makes me think that 5 years, and not 10, is a realistic goal. That's pretty exciting.

************************

That second piece comes from a report given at the American Association for Cancer Research conference, which has been going on in Denver for a few days. I've been gathering up some other reports from AACR that deal more specifically with NHL, so I'll share those within the next few days.

Research: Alternative to Biopsy

This is very cool. Stanford researchers have developed a blood testing device that will potentially detect cancer, using a tiny drop of blood (about as big as the period at the end of this sentence, they say). The full article is here.


The device works by testing for the proteins present in cancer cells. It can detect a sample as small as a picogram -- one trillionth of a gram. (I can't even give you a comparison for that -- imagine cutting a raisin into a trillion pieces. See? You can't even imagine it.)


The science for this is kind of complicated (though explianed a little better in this British newspaper article), but the point is, this gets at more of that "personalization" that is the trend in cancer research. Instead of giving a treatment and waiting days or even weeks, and then giving a scan to see if a tumor has shrunk, this device will be able to test changes in the proteins on the surface of the cancer cell.


There isn't enough detail in the articles (and maybe not enough detail from the studies yet) to know if a biopsy would be completely unnecessary. For NHL, for example, there needs to be a biopsy to determine which of the 30 or so different NHLs is present in the sample. The appearance of the cells helps determine which type the patient has. But they are pushing this especially as a biopsy alternative, so maybe they've got all of that figured out.


The initial tests used blood because they were looking at lymphomas. Further tests will look at solid tumors.


It's potentially a small change, but a crucial one. As someone who's had a node biopsy and a bone marrow biopsy, I'd be grateful enough just to be able to avoid those. But the potential for monitoring treatment effectiveness seems pretty big to me.

The War on Drugs

I'd like to share with you a theory of mine.

Much has been written about the War on Drugs, and whether or not it has been effective. Some say that millions of dollars spent on educating children about the dangers of drugs and on enforcing laws has been worth it. Others say the millions spent has resulted in overcrowded prisons but has not driven down demand for drugs all that much. The Lympho Bob blog doesn't get into politics, so whether or not it's been effective isn't really my point.

What is undeniable is that millions of dollars have been spent on attempts to combat drug use bykids. It was part of a major shift in our culture.

Some hold the theory that the war on drugs started with Nancy Reagan's "Just Say No" campaign in 1982. Others say it started much earlier, perhaps as early as 1967, as a backlash against the glorification of drug use during the so-called Summer of Love.

My theory? The War on Drugs started on May 15, 1976, when Mark Fidrych made his starting pitching debut for the Detroit Tigers. Millions of kids that summer started talking to their baseballs, imitating Fidrych. Their parents thought they were (a) insane, (b) watching too much TV, or (c) doing drugs.

Meanwhile, Ronald Reagan, nursing his wounds from a brutal primary campaign against Gerald Ford, had begun to reassess his political life, even before the primaries were officially over in early June. On May 18 (a mere three days after Fidrych's debut), Reagan lost the Michigan primary by a wide margin, 65% to 34%. Deciding that he needed a new issue to rally social conservatives, he turned on the TV and saw Fidrych pitch, talking to the ball, reshaping the mound, running out to the outfield to congratulate a teammate on a good defensive play. Like many of the parents in the country, Reagan assumed Fidrych was on some serious drugs.

He had found his political issue.

Masterfully reading the social zeitgeist, Reagan planned an entire political campaign around the War on Drugs, with Fidrych (no-doubt a communist from the People's Republic of Massachusetts) as his cover boy/target. At the same time, he'd get to punish the people of Michigan for the trouncing he received in the primary.

But by the 1980 election, Fidrych was out of the majors, and the hot political issues were the Iran hostage crisis and the long gas lines. Reagan tabled his War on Drugs, eventually tossing it to Nancy as a way of keeping her busy. The rest is political and cultural history.

Sports Illustrated has a nice appreciation of Fidrych, who died on Monday. Those of us who are of a certain age will forever remember his awesomeness. Since he was a Massachusetts kid himself, that made it even better for me.

Rest in Peace, Bird. And know that you not only made lots of wiffle ball games in the mid 70's much more interesting, you also were responsible for a major political and cultural shift.

A Few Follow-Ups

Well, my Louisville Cardinals men's basketball team lost in the Final Four.


Then the Louisville Women lost in the championship game.


But all is not lost this spring. My BU men's hockey team won the NCAA Championship on Saturday night in dramatic fashion, scoring two in the last minute or so to tie it up, and then winning it in overtime. Go Terriers!

I may have to write sometime about the time I got kicked out of a BU hockey game during my freshman year for saying bad things about the BC players.


**********************

I've been good about not reporting lately on some of the amazing chesseburgers I've seen online. They look great, but some seem to go a little overboard. But since baseball season just started, I thought I'd pass along the Fifth Third Burger being offered by a minor league team called the West Michigan Whitecaps. The burger is made thusly: "Start with an 8-inch sesame seed bun that requires 1 pound of dough and is made specially for the Whitecaps by Nantucket Baking Co. of Grand Rapids. Spoon on nearly a cup of chili and place five one-third pound hamburger patties on top of that. (Get it, 5/3 pounds of beef for the Fifth Third Burger?) Add five slices of American cheese and liberal doses of salsa, nacho cheese and Fritos. Top it off with lettuce, tomato and sour cream, and you have a burger that can be sliced with a pizza cutter and feed four people for $20. Jalapenos are optional."


The White caps concessions people had planned on giving a t-shirt to anyone who could finish the burger on their own (the shirt has nutritional information on the back -- 4, 989 calories). On opening night last week, 32 people took the burger challenge, and 17 were able to finish.

Seventeen people finished the thing? You call that a challenge? My brother and I each ate almost 5000 calories worth of our mother's manicotti at Easter dinner yesterday.


***********************

Finally, this is a post-Easter video that was too good to not link to. A woman in Rhode Island was accused of cyber-stalking a business competitor by going to the public library and signing the other woman up for loans, etc., so that she had people calling her all the time. The woman got caught doing it. To clear her name, she called a TV news show to do an interview with her. When the TV guy showed up at her business (she owns a costume shop), she tried to do the interview in a monster mask and a bunny suit. Just bizarre. I love Rhode Island.


***********************

Mom -- I never thanked you for all that Coast soap. I used it this morning, and I feel good -- really able to take on the day.


Have a good week.

Two Articles

A couple of recent articles on treatments:

The first is a look at Rituxin and other monoclonal antibodies, and how they're being used in general in fighting cancers. There's a big focus on lymphoma, of course, since that's the cancer that has had the most success with monoclonal antibody therapy. The good part of the article, I think, is the explanation of how the antobodies work. Not exactly new information, but a nice piece.

The second is an article on some Bay-area researchers, who are working on a cancer vaccine, again focused on lymphoma. An interesting approach: a specific tumor is weakened by radiation, then a modified DNA is injected. The DNA had been modified to look like bacteria. The immune system goes after this bacteria, attacking the tumor at the same time. Early results seem to show some success. Cancer vaccine research is still not what we had all hoped it would be, but researchers are taking a bunch of different approaches to it, so maybe one will work, or work well enough that others will find a way to improve upon it.

**********************

I hope everyone has a good holiday. This is always a nice time of the year. Re-birth is a good thing.

I'm Back

I was in the DC area for a few days. Thank you to the in-laws for their hospitality -- dinner was great. Sorry I didn't get to see more of you (that is, more actual in-laws and more of those that I did see).

I was in the area for a workshop on Presenting Data and Information, by a guy named Edward Tufte. Very interesting workshop. Tufte focuses on ways that information of all kinds gets presented in charts, maps, graphs, etc., and how poorly contructed visuals can cause problems for the people who are trying to get information from them. (Tufte got famous because of his critique of the ways the Boeing engineers presented problems with the Columbia space shuttle in a PowerPoint presentation to NASA that downplayed the problems that ultimately caused the shuttle to burn up as it re-entered the atmosphere.)

I took an Amtrak down to DC. I sat behind a "Life Coach" who was speaking on the phone -- loudly -- with clients for the first two hours of the trip. ("Brian? Hey, it's Brad. Who's a Big Dog, Brian?...Who's a Big Dog?...Who's a Big Dog?...There ya go, Brian. So what's been happening this week, buddy?") Fascinating process to listen in on. I now know that life is not a spectator sport. We do not watch the game, we play it, and we sweat and grunt as we do so. I love a good extended metaphor.

Anyway, Tufte is what we in the college teaching profession call a "Rock Star," someone who attracts a large following when he speaks publicly. Tufte is a retired Yale professor, and my guess is he retired early when he realized how much more money he could make by traveling the country and giving one-day workshops like these. He had the whole Rock Star thing going -- even a crew of five roadies with head sets who ran around and worked the sound boards and everything else. Very impressive. There were probably 400 people there to see him, and he was in DC for two more days. A bigger crowd than Def Leppard has been getting on their tour lately, I think.

Anyway, I learned some good stuff, and it will certainly help me both in my own writing and in what I pass on to my students

Tufte is very much into simplicity -- stripping away graphics of anything that clutters the message. But he also values complexity, and thinks we should add more information to our graphics if that information is clear and helps readers/listeners understand our point. He gave one particularly relevent example, having to do with cancer statistics.

Tufte gave the example of a cancer patient who had just heard the bad news, and who naturally wants to know what the prognosis for her future might be, and so looks up survival statistics. A very realistic situation: this is someone who needs information fast, and who is not ina state to read unnecessary stuff. Tufte points out that a table in a mecial journal about cancer survival statistics does a decent job of presenting that information:

(Now, before I move on, let me make clear that the statistics in this example are 10 years old, pre-Rituxin for NHL, and that NHL is lumped as one cancer, and not the 30 different cancers that the term "NHL" actually represents....It's just used as an example, not as a source of facts about NHL. So don't even look at the numbers.)

Anyway, it's a good table if you're a patient who's very emotionally fragile and looking for clear information. Tufte points out that we tend to prefer things like PowerPoint templates for presenting information, since it allows us to add lots of color and effects and bells and whistles. But, says Tufte, if you used a PowerPoint template to create a graph that would visually represent those same clearly presented statistics, this is what you might get:

Now, he says, if your job is to provide useful information to a cancer patient, and that is what you provide, then you are doing a lousy job. You need to dig around to get to the information, especially the NHL statistics, which are in that weird triangle-looking thing on the right side. Simplicity is not a bad thing. Just because you can use lots of color and motion and other fancy graphics feature, doesn't mean you should. (He really doesn't like PowerPoint.)

So I thought that particular example was fascinating. He spoke to us mostly as creators of graphics, but also made the point that we are consumers of graphics, too, and we should demand clarity.

A nice example for my students.

(Tufte's whole discussion of cancer statistics is available at his web site. I want to make sure I give him credit for those graphics.)

Video on Giving Scan Results

Medscape is a really interesting source for medical information, and they have a video blog feature that I've looked at a few times when they deal with Lymphoma issues.


The blog from a few days ago features Dr. John Marshall, who's the head of oncology/hematology at Georgetown Medical School. The short video (three and a half minutes) can be accessed here, if you're a Medscape member (free membership), or by cutting and pasting this URL into the Google search box: http://www.medscape.com/viewarticle/590083.


Marshall talks about an experience he had the day before he recorded the video, giving scan results to a patient. He came to the realization that his words weren't just affecting the patient who had the scan, but all of the people the patient will tell about it, and all of the people that those people will tell. In the video, he's speaking to other doctors, and his point is that they need to slow down and make sure they are giving as much information as possible, considering that many more people than just the patient will want to know what the scan says.


It's not a terribly detailed video (it won't give you a whole lot more than the summary I just gave you), but it's pretty interesting in light of my own most recent scan. I love Dr. R, and I had a great visit with him last week, and it all only reinforces for me my idea that Dr. R was having a bad day a month ago when he gave me the scan results. He just seemed off that day.

What I like about this video is the reminder that doctors are people, too, and that they need reminders to act that like people, for people. Isabel has been sharing my recent experiences with a medical doctor that she sees socially; she used to teach in a medical school. She told Isabel that she used to say to some med students that they should really consider becoming surgeons, because people expect surgeons to be jerks. But if they wanted to go into some other branch of medicine, they better learn to behave a little better with people.


I think we, as patients and caregivers, need to find ways to slow our doctors down. I've dealt with about a dozen different doctors in the last year and a half, and they've all been pretty great (even the surgon who did the biopsy, who wasn't a jerk at all). But they have their bad days. You need to go in prepared, and you need to ask questions, even the ones that seem basic and stupid. Good doctors will realize, after a few really basic questions, that they haven't done a very good job of explaining themselves, and hopefully will start over again. But we can't be afraid to ask.

***************

I'm off to a workshop for a few days, and my computer access will be limited, so don't expect an entry until the middle of next week. In the meantime, get off the computer and go plant some seeds or something.