Happy Halloween

Well, based on his comments from a few days ago, apparently my brother doesn't like it when I write about cancer in this blog that I started to inform and educate people about my cancer. But that's OK. I love him, so I'll give him what he wants.


And apparently, he wants posts about old TV shows. So, fine. Here's the special Halloween Spook-Tacular edition of Lympho Bob, beginning with TV-related Halloween links.


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Here are some clips from The Muppet Show when Alice Cooper was the guest host. Cooper plays a black magic/devil's messenger character, in line with his stage persona. Clearly from the 1970's, pre-Ronald Reagan, when jokes about devil worship and selling one's soul were not discouraged from childrens' television for some reason.


My brother was disturbed by this next show, but I loved Pee Wee's Playhouse. While PW did a Christmas special, there was no Halloween special. But there was a recurring trick-or-treat-like gag in which Pee Wee was annoyed by salesmen at his door, so that's close enough. But one of my favorite episodes was "Let's Play Office!", because I always imagined my brother's work life must be just like that (but with more yelling).

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World Series time shouldn't be scary, but sometimes it is, and not just because it's so close to Halloween.

First, there are scary version of the national anthem, performed poorly, as it was before game 1 in Tampa Bay. It was performed by 80% of the Backstreet Boys, with one of them smart enough to stay away. I love the BBs -- they're the official boy band of Lympho Bob, and not just because of those two Chinese guys lip synching "I Want it That Way." It's because I think of Amy whenever I hear them.


Also scary: this Phillies fan, going all Joe the Plumber on us. Having been to a Phillies game this season, I can say that when you make the Philly Phanatic mascot guy some close to puking, you have a problem.


Scary stuff.

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Here's a list that's worth some debate: The 10 Scariest Movies of All Time. I agree with a few, though some seem pretty obscure to me (not only didn't see them, but never heard of them). I'm not a huge fan of scary movies. But I have to agree with the #1 pick. I saw it featured on some other film show recently, and I turned the channel. I don't want to see any of it, even if it's just a key scene without all the buildup that makes it even scarier.

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This clip is irresistable: A scary Michael MacDonald (from the Doobie Brothers), a Thriller reference (see a post from earlier this year), and Halloween, all rolled into one. Awesome.

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Finally, a clip from It's the Great Pumpkin, Charlie Brown. I'm sure my own brother sees me in both Charlie Brown, and the "blockheaded" Linus. But is it such a bad thing to think you have the most sincere pumpkin patch in all the world? I say No. It's almost Mr. Rogers-like in its simple beauty.

May you have no trouble with your scissors, and may you get no rocks in your Halloween bags tonight.

Physical

I had my annual physical this morning. Everything looks good (EKG, blood pressure, eyes, ears, etc. etc.). I'll go to a local lab for bloodwork in the next few days for blood tests to check cholesterol, liver and kidney function and all that (some of which I get checked with Dr. R, anyway), but it seems like I'm a pretty healthy guy. You know, for someone with cancer.

So I've got that going for me....which is nice.....

I'll assume my cholesterol will be its usual brag-worthy 170 or 180. I'll be sure to let you all know when I get the numbers.

Watch tomorrow for the Lympho Bob Halloween Spook-Tacular.

The Other Side of Stem Cells

OK, enough on Mr. Rogers. Who would have thought he would cause such animosity?

Back to research reports. I know some of you find this interesting, but frankly, it's as much for me as it is for you. I need to read about it and understand it before I can pass it on to you in a simpler form, and that helps me understand what kinds of treatments are out there. We teachers know that the best way to learn something is to teach it to someone else.

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Really interesting article in a recent edition of The Economist, called "Cancer Stem Cells: The Root of All Evil?" Lots of great cancer research looks at developing new treatments, or refining currently-used treatments, or comparing treatments. But the Holy Grail of cancer research is finding out what causes cancer in the first place. We know, basically, what cancer is: unchecked growth of cells that won't die off the way normal cells do, causing tumors that take resources from the rest of the body. But what causes the unchecked growth of a tumor in the first place?

According to this article, it has to do with cancer stem cells.

In general, stem cells are immature cells that have not grown into specific types of cells. We all have millions of stem cells, waiting to mature into specialized cells that will replace those cells that die off naturally (or are killed off). For example, a stem cell transplant works by killing off tumors and a problematic immune system and replacing it with immature stem cells that will grow quickly and replace the killed-off cells, creating a new immune system. Go stem cells!

As the article describes, this is all just a theory, but it's being tested, and it works like this: Just like all of the healthy cells in the body, cancer cells are born from stem cells. But there's a difference between the stem cells and mature cells.

Mature cells grow by dividing into two equal cells the original cell and a copy of itself. So a skin cell creates two identical skin cells, the old one and a new copy. The cells can only divide a limited number of times, and then they die off. So they need to be rpelaced by new cells, which can then divide a few times themselves. That's where stem cells come in.

Stem cells are different from mature cells: when a stem cell divides into two, one of the two stays a stem cell, while the other grows into a new, specialized cell. So a skin stem cell will create one new skin cell, but the other will remain a stem cell. This is how we have a constant supply of new cells -- the stem cells are always there, waiting to create one new, specialized cell. The body has a limited number of stem cells.

According to the theory described in the article, cencer stem cells are the problem: when we treat cancer, we treat the mature cancer cells (the mature cells that have grown from the cancer stem cell), but we never get to the stem cells that are still sitting there. Read the article to get more on the fascinating research that has gone into showing that stem cells are different from their mature cells, and how it has effected cancer research.

If the cancer stem cell theory proves to be correct (and it may not be -- the article gets into the controversy surrounding it), then researchers might have a better chance of developing new, targeted treatments that will get at the root cause of the cancer, not just the tumors that develop.

Very intersting stuff.

Won't You Be My Neighbor?

I have to comment on this story.


Apparently, some students from the Tulane University Law School had a party at a children's museum in New Orleans. One exhibit at the museum is dedicated to Mr. Rogers, and featured a pair of the famous sneakers that he tied at the beginning of every show. Someone from the law school attending the party smashed the plexiglass case and stole one of the sneakers. After an appeal from the dean of the school, the sneaker was returned; it was found tied to a pipe under a sink in the women's room.


Who would do something like that to Mr. Rogers?


This kind of thing happened once before, when Mr. Rogers was still alive. He drove an old Chevy Impala for years, and one day, it was stolen from its spot on the street near the TV station where he was filming. The story of the theft got out, and was all over the news. Two days later, the car was parked in the exact spot where it was stolen, with a note: "If we'd known it was yours, we never would have taken it."


That's more like it.


I have to admit, I was never a Mr. Rogers fan when I was a kid. I don't know why -- I just never connected with him. But then, after Isabel and I were married but before we had kids, we heard an interview with him on the radio. He was discussing a book of letters that people had written to him. (He was a great letter writer, and kept up corresponence with some people for years, even if he'd never met them.) One story he told during the interview just killed me: it was from the mother of a small girl who was being treated for cancer. The girl needed frequent scans to check on her progress, and hated being trapped in the scanning tube, where she needed to keep still. (I know now just was she was going through.) For a little kid, even just two minutes of keeping still seemed like an eternity. But her mom figured out that it took two minutes to sing the theme song to Mr. Roger's Neighborhood, and so mom would get on the microphone that the technician uses to give instructions to the patient, and she and her daughter would sing the song together. When it was done, the little girl's scan was done.


And then, of course, I had my own kids, and I became a bigger fan. Peter was a Mr. Rogers fan. He liked that Mr. Rogers talked to him.


And then I'd watch more, and I'd see him do stuff like this. He's just so cool.


And those sweaters he wore? His own mother knitted every one of them.


How could you not love this guy?


I'm kind of sorry I waited so long to enjoy him. He's really easy to make fun of, but we need more people like him.

L and M

As I said in my last post, the Lymphoma and Myeloma Conference took place last weekend, and some of the information about the research that was presented at the conference is starting to trickle out. As I promised, I'll share it when I get it, so today I'm sharing. I'm mostly getting the information from people who were there and took notes, so there aren't really any links to the conference or to research reports just yet. I'm sure they'll be coming out eventually. But in the meantime, you'll have to trust me, just as I'm trusting my sources.

One presentation from the conference looked at levels of mortality in European NHL patients. The incidents of mortality are declining in the countries that were surveyed. They had steadily risen until about 1999, and they've been falling (slowly) ever since. While a cause isn't mentioned, I'm guessing it's because of the widespread use of Rituxin that began at roughly that time. Whatever the reason, that's good news -- treatments are working.

(I should probably remind you about statistics -- they're helpful in comparing treatments, but don't mean much in the big picture. Follicular NHL effects older people, so mortality rates don't necessarily mean that they died of lymphoma. Seearch for my earlier post on this topic if you want more.)

Another presentation (more relevent for me) had to do with when to begin treatment, asking if watching and waiting was still appropriate, given advances in immunochemotherapy (Rituxin + chemo) and RIT (Zevalin and Bexxar -- Rituxin laced with radiation, basically). The expert who led the discussion said that watch and wait still makes sense since some patients never need treatment, their lymphoma waxing and waning, but never causing enough problems to require other treatment. In addition, watching allows the doctor to keep track of the clinical behavior of the lymphoma (is it becoming more aggressive?) which will change the treatment that's required. So this is basically an endorsement of watching and waiting as an acceptable approach.

Another presenter looked at the National Lymphocare study, which surveyed 2,728 lymphoma patients. An interesting little nugget: Watching and waiting is most commonly used in the northeast, less so in other parts of the country. Looking at other data, it seems that there's some correlation between the use of watch and wait in the northeast and the fact that there are so many more cancer centers around here, so patients can more easily get second opinions.

Another bit from the Lymphocare study: the most common first treatment choice for follicular lymphoma is R-CHOP, a fairly aggressive chemotherapy. I didn't get much more on that fact, but it makes me wonder about my doctor (who is recommending a much less aggressive plan for treatment -- R-CHOP would be maybe the third or fourth choice down the road). I'm not disagreeing with what he's recommending; I'm just wondering if his less-aggressive approach is related to the northeastern preference for watching and waiting.

R-CHOP (a combination of Rituxin and four chemotherapy drugs) has also been shown to lessen the chances of transformation (about 30% of follicular NHL patients will have their lymphoma transform to something more aggressive), so there's that consideration. On the other hand, Dr. R's plan is to hold off R-CHOP so that it's available in case there is some transformation, so the benefits will be there anyway.

That's the tough part of staying informed: so darn many choices, and none of them have definitive answers. Still, I'd rather go into a conversation with my doctor with a sense of what he's talking about than just going in blindly and trusting his choices. I still need to trust his choices, but at least I can know enough to ask the questions that will get him to justify those choices.

In the meantime, I'm still feeling OK, and that's what matters.

. This point made by Dr. Leonard. Also based on the National Lymphocare Study, n = 2,728: * Initial observation (w&w / expectant management) is most commonly used in the NorthEast US, less so in other regions of the country. * W&W is more commonly recommended in areas of the country where multiple centers exist - where the patient can more readily get second expert opinions. (hypothesis)* Also, from this study the current trend is to use CHOP-R as first therapy for FL when treatment is indicated.

Conference and Trials

At last -- my laptop is fixed. Wireless is working OK, printer drivers are downloaded and functional. Amazing what a week of limited technology will do for you. (What it might do is make you appreciate living a non-technological life, understanding how bad it is for you to be so reliant on computers for your work, communication, and entertainment. Unfvortunately, it didn't work that way for me, and I have little appreciation for that non-tech life. I'm glad to have my computer back. So glad I'm going to spend the next half hour on YouTube watching videos of babies laughing. Just because I can.)

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OK, I'm back. I love laughing baby videos. Like this one.

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This past weekend, the Lymphoma and Myeloma Conference took place in New York City. It was attended by one of the support group members named Karl, whose wife has follicular NHL, and who works as a medical writer, so he's an excellent source of information for us. (He founded and runs a site called Lymphomation.org; if you're ever looking for a great beginning source of information about lymphoma, that's is the place to start.)

Karl gave us a quick overview this morning of the conference. Apparently, there were presentations from researchers on a number of very promising lymphoma treatments, but they are still in the early stages of clinical trials. According to Karl, the number of lymphoma patients willing to be a part of clinical trials is very small, which has always been part of what has held back lymphoma research. The FDA needs evidence that tretaments are both effective and safe, and a small trial of 10 or 20 patients usually isn't enough for them to give an OK.

I've talked to Dr. R about my willingness to participate in a trial, and he's fine with that. There's a great, fairly new website sponsored by the Leukemia and Lymphoma Society called TrialCheck that makes it much easier to search for available trials; you used to need to go to a government site and sift through the trials one by one. You enter information about yourself, your disease, and where you live, and it gives you a list of current trials, with the travel distance for each one.

My joining a clinical trial is kind of restricted by a couple of things. First, while Yale (10 minutes away) has researchers that study Lymphoma, they specialize in stem cell transplants, which isn't something I'll likely need to deal with for a long time. So participating in a trial that's so convenient will probably not happen. There's Dana-Farber in Boston, and Sloan-Kettering in NYC, but at the moment there's really nothing promising there.

And that's the other problem: there are very few trials for people with fNHL who have not yet been treated. I think it's because the expectation is that the first treatment will be followed up with at least one more, so the focus is on making the second and third treatments really count.

If you're thinking that a clinical trial is a bad thing -- it's not. I know I always get the impression that a treatment in trial is something "experimental," and that always has for me the implication that things are desperate -- that conventional treatments arenb't working. But it's not really like that. Any trials I would be in would be phase III, with a reasonable chance of safety and success.

Clinical trials are conducted in three phases. A phase I trial is meant only to measure side effects and safety. (If you've ever seen ads in the back of alternative newspapers promising $500 for participating in research, it's probably a phase I trial -- the participants don't have to have lymphoma, they just have to be willing to "explore the unknown" and risk whatever side effects are possible.) Phase II trials are very small, and the participants have lymphoma. Phase II trials give researchers a sense of whether or not the treatment will work. Phase III are the biggies, with lots of participants -- enough to show that the treatment, and not something random, is the cause of the improvement.

Phase III trials are usually conducted as dual-arm studies, which means they are comparing the new treatment to one that is already known. So they'll take, say, 100 patients and give 50 the new treatment, and the other 50 something like Rituxin, and then they'll compare the success of the two groups. So the second group isn't going untreated or given a placebo -- that would be unethical.

Anyway, I look at TrialCheck every now and then to see if there's something interesting close by. I'm mostly happy to watch and wait, but every now and then I get antsy, and I think I'd rather do something than nothing. I feel a very strong connection to the lymphoma community, and if participating in a trial would help some of the thousands of people with lymphoma, that's just a bonus.

I'm sure that there will be some publicity in the next few weeks about some of the presentations at the Lymphoma and Myeloma Conference. I'll pass along those that seem interesting.

9 Months

Yesterday was my Nine Month Anniversary -- I was diagnosed on January 15.

It's been an interesting nine months. Some days it feels like it's been forever. Other days like it was just yesterday that I got the call from the doctor.

Which is strange. A colleague asked me yesterday how everything was going (it's still kind of rare for people to ask me how I'm feeling), and I gave him the update: Still stable. He said he couldn't imagine having to go through it, or something like that. I told him that it's gotten easier.

Which is true. I'm not as active with the support group these days. I still check in every day, sometimes two or three times. But there seems less urgency now. I know so much more, so I'm not following people in the group who are, say, going through a particular treatment, because I have a pretty good idea already of how it's likely to go. People post about new research, which I read, but I'm less apt to spend a couple of hours googling it on my own after that. There's just less of a sense of desperation, I guess.

Which is good. But the flip side of that, as I've worried about before, is complacency. I don't want to slip out of my vigilance. I don't want anyone else to, either. I'm mostly afraid it will be too much of a shock if (when) things do get more aggressive.

Anyway -- happy anniversary to me. And many more.

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I have a new laptop, but the wireless is messed up, which makes it kind of useless. I'm anticipating continued difficulties finding the time to post. Stay tuned.