'Planet Cancer'

While searching for something entirely different (doing research for a client on customizable social and professional networking platforms) I tripped over 'Planet Cancer', a social network that describes itself irreverently as:

...a community of young adults with cancer in their 20s and 30s. A place to share insights, explore our fears, laugh, or even give the finger to cancer with others who just plain get it. So, welcome to Planet Cancer - we're glad you're here. Well, not really. But you know what we mean... Better than a Lithium lick in the corner of your room.

Some may be shocked or offended by discussion threads such as "Anyone still find they 'love' their meds?" or "Anyone else set their 'expiration date'?" but it's hard not to feel the love and mutual support that participants bring to this community. The latter post began as follows and kicked off a lively discussion.

Ever since I have survived cancer I have told a few people that I know when I am going to die. I usually say it is in my mid-40s when the cancer comes back. I am 29 right now. I accidentally let this little theory slip to my mother the other day and it really freaked her out...

OK, as a parent, I can see that. Check it out... or better yet, recommend it to someone you know who may be suffering and needs some support. Also check out the site's 'top ten' lists, which include "Top 10 Reasons Being Bald Rocks" and "Top 10 Ways to Disrupt the Waiting Room". Laughter really can be the best medicine...

How We Are Blessed in the West

And why real research and high standards, at places like Dana-Farber, are key. From today's WSJ (subscription required):

Last June, Yan Zhenni, a 5-year-old with leukemia from Shanghai, received a shot of the anticancer medication methotrexate. But the drug meant to treat her left her incontinent and unable to walk on her own, her mother says.

Possibly dozens of patients across China who took the drug from the same Chinese factory had similar problems. The drug's manufacturer initially said the reactions might be a side effect of the medication. Later, government officials investigating reports of problems with the drug discovered the medicine had been contaminated, blamed its maker for a coverup and revoked the factory's license to make the drug.

"We were so hopeful that she would recover from leukemia eventually. The chances were very good. But now even walking has become a problem," says 28-year-old Ms. Yan, who took a leave from her job at an auto-parts factory to care for her daughter.

Theories of Cancer

Check out this thought-provoking piece in the Times of London Literary Supplement yesterday by bladder cancer survivor Sandra Steingraber, reviewing two new books on the intricacies of the scientific, medical and public policy debates about (or rather, the struggles over) how to think about the origins of cancer [links added].

One advantage of being a long-time cancer survivor – besides the obvious – is that it provides a front-row seat in the auditorium of ideas about the disease’s causation. Theories go in and out of fashion over the years, paradigms shift this way and that, and the patient is viewed differently by the medical community depending on which idea is currently on top.
...
Two new books expose and explicate the ongoing social contest that is at the heart of our shifting understanding about cancer. They are both important and deserve to be read together. Devra Davis’s book [The Secret History of the War on Cancer] examines the historical forces at work when doubt is cast on the environmental evidence. Phil Brown’s book [Toxic Exposures] explores the opposing social movements that are struggling to rescue this evidence and to bring about public health policy change based on it.

Solving the Adult Leukemia Mystery

When my brother Ed got sick (three years ago this March) we were initially optimistic. The Internet surfing I did in the wee hours after receiving a call from my sister-in-law indicated that his type of leukemia (A.L.L., or 'Acute Lypmphocytic Leukemia') had a very high cure rate (90%).

What we discovered a little later was a chart showing how that broke down by age. Because the vast majority of people who contract ALL are kids, the cure rates reflect their unique physiology and responsiveness to treatment.

The age group with the lowest incidence of A.L.L. is the group that my brother was in (35-39). It is also, we discovered, one of the groups with the lowest cure rate. But because the incidence numbers are so low, the cure rate is almost meaningless statistically.

Opening up my copy of the Dana-Farber magazine recently, I was pleased to see that Ed's lead oncologist Dr. Dan DeAngelo (a real 'rock-star' of a physician and human being -- in all respects) is helping to lead a study into precisely the mystery that killed my brother: why adults die of this thing that the vast majority of kids ultimately survive.

Here's study lead Dr. Stephen E. Sallan:

The early results suggest that cure rates for adults will be much better than in the past, hopefully comparable to those of the older children. Our larger study hopes to build on these results; I believe we are on our way to debunking the asparaginase myth, and hopefully curing more patients.

This much we know: If you are under 21 and you have ALL, you should be on a pediatric-type protocol. All the studies show it is going to double your chances of being alive. What we don't know about is the rest of the population. Is there something fundamentally different about our biological makeup when we're 30 or 40 or 50 that's different from when we're 10 or 20? Is there something different about the leukemia cell? Is there something different about the treatment regimen? Finally, is there something about being a pediatrician or an internist that is fundamentally different in either who we are or how we practice? That's a big mystery, and a key reason why our study covers people up to age 51.

At the end of five years, we hope to have the answers to all of these questions.

This kind of research is important. Won't you help continue it?

Running Again!!

OK, so it wasn't much: ten minutes, in two chunks, on the treadmill, yesterday. But it was something, and the foot didn't hurt too much (maybe even less than usual this morning). I get new orthotics in a week or so and I'm highly optimistic that that will be the real key here.

With all of the intense indoor cycling I've been doing, my cardiovascular fitness was definitely there (even if I'm hauling around an extra ten pounds). I just need to be gentle on legs that haven't felt any running impact in over two months.

April 21st isn't going to be easy, or pretty, but now there's definitely hope. There's always hope. Thanks to everyone who's given so far! One way or another, we're going to make it!

Runner's 'High'? How About Giver's 'High'?

Interesting [emphasis added]...

According to the Social Capital Community Benchmark Survey, a survey of 30,000 American households, people who gave money to charity in 2000 were 43% more likely than non-givers to say they were "very happy" about their lives... People who give also are less sad and depressed than non-givers...

The happiness difference between givers and non-givers is not due to differences in their personal characteristics, such as income or religion, age, education, politics, sex, and family circumstances...

Of course, it might not be that giving increases our happiness, but rather that our happiness increases the likelihood that we will give... Researchers have investigated this... The result is clear that giving has a strong, positive causal impact on our happiness.

A number of studies have researched exactly why charity leads to happiness. The surprising conclusion is that giving affects our brain chemistry... induc[ing] endorphins that produce a very mild version of the sensations people get from drugs like morphine and heroin...

...or running.

$1,000 per Mile for Cancer... or a Patriots Luxury Box

As excited as anyone in the Northeast (and perhaps the country) about the Patriots-Giants game tomorrow evening, I found this article interesting. The sub-title reads:

Giants Season Ticket Holders Look To Take Advantage Of Potentially Historical Game; Luxury Suite Going For $26,114

That's just $86 shy of my fund-raising goal for Dana-Farber this year: $1,000 per mile in the marathon. If you're in the market for such a seat, have that kind of money to spare and would be willing to consider putting it towards a much better and more enduring cause, I'll offer you my favorite chair in my living room and wait on you hand and foot during the game. :)