John's Oboe

John had his oboe recital today. He did a fantastic job. You can watch and listen below.

The oboe is not an easy instrument to play. It's a "double reed" instrument, which means it has two reeds that are kind of stuck together with a tiny hole between them to blow into. But when you do it right, it makes a really cool sound.

John is able to make that sound. In fact, we've had several teachers and advanced oboe players tell us what a great sound he gets out of the instrument, even though he's been playing for less than a year. We talked to someone who repairs oboes who told us that he thinks it's the only instrument that chooses the player, rather than the player choosing the instrument. Joh  has wanted to play it since he was about five.

Anyway, we're very proud of our oboe player, and we look forward to many years of listening to his beautiful music,

Jon Lester

I was going to hold off running this video until the Red Sox had climbed their way back to .500, but I'm going to just show it now, for the reasons I'll explain below.

It's a brief interview with Jon Lester, Red Sox pitcher and NHL survivor. Lester touches on a couple of NHL-related topics, including how he has now embraced the label of NHL Survivor; when he was finished with chemo, he wanted to be known as Jon Lester the Pitcher, not Jon Lester the cancer survivor. He didn't want cancer to define him, which is understandable, given that he was 22 years old.. I can see how acceoting, and even embracing that label comes with time and distance, and it's nice that he's more willing to talk about his experience now. He also offers some advice for Lymphoma patients (and one would assume, cancer patients of all kinds): keep living your life.

Here's the link for the interview (can't get my "link" button to work, but this should take you there):
http://www.dailymotion.com/video/xi35ay_mlb-on-fox-lester-loving-life_sport

Lester has a special place in my heart, and not just because he's a Red Sox pitcher. When we told the kids about my diagnosis, I mentioned to Peter that he'd already heard about NHL before, and that it was what Jon Lester had been diagnosed with. At that point, Lester had been treated and was back with the team, having pitched in the World Series just a few months before. When I said that, Peter's whole body relaxed, and I think knowing Lester was OK has helped him cope with all of this.

And today is Peter's birthday, so a little Lester is fitting. Happy birthday Peter. Enjoy yourself. (But not too much.)

Awkward Easter

If you've never wasted time on the website Awkward Family Photos, I highly recommend it. But make sure you have a good hour to waste before you go there. It's addictive. Someone at The Huffington Post put together a compilation of awkward Easter photos from AFP that's pretty funny, and gives you a taste of what the site is about. Plus, Easter photos seem timely, if a day late.

Awkward Family Photos has some pretty scary and very funny photos. It's one of those great sites that it basically created by its users -- people send in strange photos of their families, and others comment on them.

Isabel and I were wasting time on it one night a couple of months ago, and as we were clicking through pictures, Isabel stopped and said, "Wait -- go back -- is that....?" and then gave the name of someone we know from work. Indeed, it was the person she thought it was. The photo in question was a family portrait; most of the family was in a standard pose, but one family member was about four feet away from the others and obviously pissed off. Given what we know about the family, we decided that one of the kids, the somewhat rebellious oldest one, had sent in the picture without anyone else in the family knowing about it. Given the family, there's no way they would have allowed it if they had known.

We couldn't keep it to ourselves, but we also couldn't come right out and ask the person if they knew about the photo, and we couldn't spread it around, lest it got back to the co-worker. So we asked two other people what to do -- they also knew the co-worker and we knew they'd be discreet. They thought it was very funny, and one suggested we just drop the words "awkward" and "family" and "photos" in casual conversation the next time we saw the co-worker.

We never did find out if our colleague knew about it or not. And we're still afraid to ask.

All of this is, of course, a roundabout way of hoping you had a Happy Easter, Passover, or just plain good weekend.

Pulitzer Prize

This year's Pulitzer Prize for General Nonfiction was awarded this week to Siddartha Mukherjee for Emperor of All Maladies: A Biography of Cancer.

I wrote about this book in the fall. I hadn't read it at that point, and just wrote about how fascinating it looked. I asked my wife to buy it for me for Christmas. It's kind of a non-traditional gift request for a cancer patient, I'll admit. Isabel didn't buy it for me -- probably blocked it out, and who can blame her? -- and she still feels a little guilty about it.

I did end up taking it out of the library, but it was so new that I only had 2 weeks to look at it before I had to return it, and I got through maybe a third of it. It was fascinating. I can tell you that the prologue completely sucked me in. You can read it yourself here; scroll down for the prologue reprint, and then go back to the top for a podcast interview with Mukherjee from Fresh Air. Mukherjee can write -- not just about the science behind cancer, but about the people behind cancer -- patients and doctors -- as well. The story in the prologue about Carla Reed started to stir up some unpleasant feelings in my gut, thinking about the kind of uncertainty that comes right after a diagnosis.  Not fun, but I kept on reading. It's a really compelling book.

The Pulitzer Prize is a very big deal, and the citation for the award calls the book "an elegant inquiry, at once clinical and personal, into the long history of an insidious disease that, despite treatment breakthroughs, still bedevils medical science."


I give it two thumbs up (or maybe two lymph nodes up?) and look forwrad to reading the rest of it this summer. About as appropriate for beach reading as it is for a Christmas gift, but I'm going to do it anyway.

More Nanotechnology

I've written before about nanotechnology: the use of really, really (really) tiny particles injected into cancer patientts for various reasons in an attempt to kill off cancer cells. (I still really like the one that uses gold particles. You'll have to look that one up in the Lympho Bob archives if you want more information).

One very promising use of nanotechnology that I've read (and written) about has been different attempts to deliver chemotherapy drugs directly to cancer cells. It works kind of like RadioImmunoTherapy: the tiny little nanoparticles are coated with or otherwise contain the chemo drug, and are developed to seek out and attach to the cancer cells and deliver their payload. This way, the chemo isn't just released and allowed to kill off healthy cells, too: the nanoparticle is only delivered to the cancer cells. In theory, this means less toxicity, fewer side effects, greater effectiveness.

As far as I know, there isn't a delivery system like this that has been approved yet, at least not for NHL. But already, some researchers are finding ways to improve upon the models that are bouncing around out there. Science Daily reports on some smart people in new Mexico who have redesigned the nanoparticles into honeycomb shapes, which allow for more chemo drugs to be stored in the crevices. (Imagine it as a kind of nightmarish English Muffin, but instead of nooks and crannies holding melted butter, they hold cyclophosphamide, vincristine, and doxorubicin. Which is kind of funny, in a sick way, if you think about it. You'd need rubber gloves just to eat breakfast.)

Anyway, the Science Daily article is called "Nanoparticles With Honeycomb Cavities Containing Drugs Blast Cancer Cells," and it describes how all of this would work. The nanoparticle would have an increased surface area with all of those crevices, and when that's combined with a better way of attracting cancer cells, the result is what they call a "million-fold improvement in efficiency" over other methods that do something similar, but without the nanoparticles.

You can read more about the details in the article. It's still being tested in cells, and will soon be tested on mice, and may be ready for commercial use in as few as 5 years. Nothing in there about lymphoma, specifically, but it certainly seems like the kind of approach that would work well for a systemic cancer like lymphoma, where the cells need to be hunted down in the blood.

Daffodils

Last fall, Catherine and I planted some bulbs -- daffodils in the back yard, crocuses on the front lawn.

The crocuses took forever to come up. Just as our neighbors' flowers are starting to fade, ours have finally managed to push their way up. Two white ones, the hint of a purple one, and the long spikey leaves of about ten more showing through the grass. They've given a brave effort. Very inspiring.

The daffodils, on the other hand, have done just what they're supposed to do, and started to show up even before all the snow was melted. They've in full bloom now -- combinations of white, yellow, and a few orange centers.

Daffodils are, of course, a symbol of hope. The American Cancer Society uses them to thank people who donate. Those crocuses, I guess, are a symbol of perseverance. Nice combination, those two: courage for now and for the future.

Because sometimes we need it.

Burning Questions?

Here's a link to an interesting slide show from Michele Ghielmini, from the Oncology Institute of Southern Switzerland, called "Update on Lymphoma and Myeloma 2011." I don't know much about Ghielmini, and I'm not sure why this slideshow is being posted, though there's an ad on the last slide for a European lymphoma conference in June, so I'm assuming that Ghielmini is presenting this slideshow there. The slides are organized around a series of "burning questions" that are being deabted and researched right now, with one question focusing on each of several different lymphomas/blood malignancies.

I found the burning question for Follicular NHL especially interesting: Watch and Wait or R-CHOP?

The slides present a bunch of information, and I assume Ghielmini will explain and comment on them during the conference, but my first reaction to that question was, "THOSE are my ONLY two choices?"

Looking at the slides, I think this is kind of a false question, and I'm guessing Ghielmini doesn't mean to answer it, exactly, at least as it is presented. The slides actually discuss a whole lot of fNHL research from the last few years, comparing, in various combinations, W & W, single agent Rituxan, R-CHOP, Bendamustine/Treanda, and a few other established and newer treatments. The second-to-last slide for the Follicular section (slide #31) clearly shows that Bendamustine is a superior choice, if you're looking only at statistics. That wasn't even included in the burning question.

It's the last slide in the section (#32) that brings it all together. So I'm guessing the answer to the burning question of "Watch and Wait or R-CHOP?" is probably something like "Neither. Or either. Or both. Or something else." In other words, if I was someone looking for a definite answer as to what the ideal first-line treatment should be, I'm not going to find the answer in this slide show.

The final slide says to consider prognosis (grade, stage, and FLIPI score), factor in symptoms (none to life-threatening) and weigh the patient's priority (long remission vs management of symptoms) and then consider Watching and waiting, a "soft" treatment like Rituxan, RIT, or Treanda, or an "intensive" treatment (like CVP or CHOP).

So, it's an interesting slide show, but in the end, we're really no closer to figuring out the best course of action. (In fact, the last slide is dated 2009. Nothing much has changed in two years.) As the last slide suggests, it really is an individual choice at this point in the evolution of fNHL treatment.

The potential good news in all of this is that there are a lot more treatments that are likely to become available in in the next 5 years. The potential bad news is that maybe none of them are going to be the answer to this burning question. But then, the good news is, that means more potential treatments than we have now, which is good when you consider that the dominent strategy now in dealing with Follicular NHL seems to be to keep looking toward the next treatment while hoping the last one keeps working. More arrows in the quiver, as Dr. C, the specialist I saw so long ago, would say.

Still lots of reason for hope.