Thursday, February 28, 2013

Labeling Ourselves

Dr. Rick Boulay, an oncologist in Pennsylvania, wrote a really nice piece a couple of days ago called "Cancer, Redefined: 'Survivor'." The idea behind the article is that as cancer has changed, our approach to cancer has changed, and thus the philosophy behind our approach to cancer has changed.

We can see the change, says Dr. Boulay, in the language we use to talk about people with cancer.

A generation ago, we had "heroes" (people who overcame cancer) and "victims" (people who didn't).

Then we had "patients" -- people who were actively being treated.

Then we had "conquerors" -- people who took the tough-as-nails approach to beating it.

And now we have "survivors," which, to many, denotes anyone who has it, had it, or isn't sure. The day you get diagnosed, say some (including me), you are a survivor.

I find the whole subject pretty fascinating. It gets to the heart of what I do for a living, of course -- thinking about the words we use and the implications of those words. I've written a bunch of times about the words we cancer patients/survivors use to describe ourselves.

This article made me remember the time a co-worker told me that I was victim. A friend of hers with cancer had laid it out for her. "If you've had it less than five years, you're a victim," she told me. "After 5 years, you're a survivor."

I leaned in closer to her and said. "I'm no victim," and I walked away. I think she thought I was playing around with her, but it pissed me off. Victims are helpless. I'm no victim. And worse, I hate the idea that I'm thought of as one.

Which is maybe why I never tell my students about my cancer, except in rare instances. One asked me once, after I'd dropped some hints, if I was a "cancer survivor." I paused before I said Yes. The pause was because I didn't know how she defined "survivor." After I few seconds, I kind of decided that it really didn't matter how she defined it. What mattered was how I defined it.

And I've written about the "survivor" label, too. Some cancer patients and post-patients don't like it, and that's their choice. For me, the word embodies the kind of toughness that "conqueror" does in the Boulay piece, with without the grand historical implications. Survivor is just as tough, but a little quieter about it all. Survivor conserves its energy, saving it for just the right time -- a reassuring hug, or an arms-in-the-air at the end of a 5k, or a long walk around a track in the middle of the night, arms linked with other survivors.

The most important thing is, we label ourselves. Or we reject the labels of others. Because words do matter.

Monday, February 25, 2013

Quicker Approval?

Yahoo had a story about the FDA's "Breakthrough" status, providing a little more background about how and why it all plays out. I think it's important -- not just because the FDA status will help more people, but also because of what it says about the effectiveness of treatments.

According to Yahoo, more treatments are getting Breakthrough status because they are showing so much success in phase 1 clinical trials.  Phase 1 trials used to be focused on whether or not a particular dose would be safe. Now, because of genetic testing and treatments that target particular genetic traits, we can see real results from phase 1 trials. In other words, if we know that a treatment will likely target one particular version of Follicular Lymphoma, and a patient has been tested to show that he has that version, and the trial includes only patients with that version, then we'll get a pretty good picture right off of whether or not that treatment will be successful.

That's great news for the patients in trials with potential Breakthrough status, and for patients with conditions that meet those criteria and could benefit later.

But it seems like great news for the rest of us, too. If we have enough potential Breakthrough treatments  that Yahoo is getting excited about it, it means that genetic testing is advancing far enough that more and more treatments might be developed based on genetics.

This is the kind of personalized medicine that we've been promised for a few years: knowing enough about the tiniest details of a person's cancer to know which treatments are likely to work.

Granted, there's lots of work to still be done -- even with genetic testing, no treatment is 100% guaranteed -- but it's a definite step in the right direction.

Friday, February 22, 2013

Follicular Lymphoma and Bendamustine

One of the really exciting bits of research from the last few years has been an ongoing study of Bendamustine (aka Treanda) and Rituxan for patients with Follicular Lymphoma and other indolent lymphomas. The study focuses on previously untreated patients, and has been going on for a  few years.

I've written about it before, since the head of the study regularly presents updated results at ASH and other blood cancer-related conferences. One big criticism of the study has been that the researchers have not tried to publish the results. That's important. Presenting at a conference is great, but it's much less formal. Publishing in a science journal means the work will be "peer-reviewed" -- other experts in the field will make sure the data was collected in a good way, and that the results are relaly as good as they seem.

Well, the results are in -- published, finally, by the prestigious medical journal The Lancet. And they're awesome.

The study compared patients taking B + R with those taking the more traditional R-CHOP. The Bendamustine patients had better results (69.5 months of progression-free survival for B + R, versus 31.2 months for R-CHOP), with less toxicity and fewer side effects.

This confirms what we've seemed to know for a few years: Bendamustine is an excellent choice, probably better than CHOP. I started to write "the best choice," but I stopped myself. I'm still OK with watching and waiting (and so are lots of experts), and I'm also OK with straight Rituxan as a first line treatment (and, again, so are lots of experts). But Bendamustine seems like the best choice for later line treatments (though this study is only first line), and for more aggressive Follicular Lymphomas. R-CHOP still seems best for transformed or aggressive FL; I haven't seen anything that suggests otherwise.

Of course, there are caveats and warnings, including one also published in The Lancet: CHOP has been around for a long time, and we have a pretty good sense of its long-term effects. that's not the case with Bendamustine. So we need to keep an eye on things there.

The good news is that we have some confirmation by the Lymphoma community that B + R is as good as we'd hoped.

Wednesday, February 20, 2013

Yale Answers

I used to listen to the local radio show "Yale Cancer Center Answers" a lot more often than I do now. Apparently, I missed some recent lymphoma-related shows in the last few months.

The show, which airs on Sunday nights, is hosted by a couple of Yale medical school professors, both oncologists. Each week, they discuss a cancer-related topic, with an expert guest. It's often about recent advances for a particular type of cancer, but they also do shows related to emotional and psychological issues,information for caregivers, healthy eating for patients, and that sort of thing. It's very informative, and they do a fantastic job of making the topics understandable. (I didn't really under stem cell transplants until I heard their show on the topic. It's from 2009.)

The shows can be searched by topic, or by date.

Last month (January 13), they did a show on hematologic malignancies -- blood cancers of all types. The show did address lymphomas, but also leukemias and other blood diseases. It covered a lot in an hour. Nothing terribly specific, but it did give a nice overview of blood cancers.

In October (gosh, I didn't realize it had been that long since I'd listened), they did a show called "Advances in the Treatment of Lymphoma." This is where they really got into the good stuff. Again, it's not hugely specific, but it provides a very good overview of what lymphoma is, how it is diagnosed, and how, in general, it is treated. The "Advances" is a little bit of a misrepresentation; they don't discuss many specific treatments by name, though they do mention Rituxan. Other than that, they discuss RIT in general, and the importance of clinical trials. I think they don't want a radio show to be construed as providing specific medical advice, which is understandable.

I think the show's great strength is that it is a good source of information. They do cover lymphomas every few months, but, as I said above, they cover lots of other topics that would be of interest to any cancer patient, no matter what the specific diagnosis.

I recommend it as a good starting place for understanding your cancer. Tell your friends.

Sunday, February 17, 2013


OK, enough with the screaming goats. Back to the cancer stuff.

Ibrutinib is in the news. It has received "Breakthrough Designation" by the FDA for Mantle Cell Lymphoma and Waldenstrom's Macroglobulinemia. Both are B cell lymphoma, like Follicular Lymphoma. Follicular is not included in this designation, though there was a small, phase I clinical trial for Ibrutinib for relapsed fNHL, and it looks like a promising treatment, based on results presented at ASH last December.

There are two issues worth discussing here. The first is the whole idea of "Breakthrough Designation," which I only recently learned about. Basically, a new treatment gets the designation if initial clinical trial results show that a treatment will be safe and effective for patients with life-threatening diseases, especially if the treatment represents a large improvement over current treatments. So, no new cold medicines will receive this designation. But a cancer treatment? Oh, yes.

That's a big deal. Cancer treatments can go through years of trials before they are available, to make sure they are safe for patients and that they are an improvement over existing treatments. And of course, we want that to happen. We don't want something unsafe, that's going to cause as many problems as it helps. And we don't want something that doesn't work as well as what we already have.  The FDA is a good thing, even if their processes are frustrating sometimes.

But they do have programs that help get treatments to people who need them. Orphaned status. Compassionate Use. And Breakthrough Designation.

More importantly, this designation by the FDA says something pretty important about Ibrutinib: it's a kick-ass treatment.

Ibrutinib is what is known as a BTK Inhibitor. That is, its purpose is to stop the workings of the BTK, or Bruton's Tyrosine KinaseHere's what happens:

B-cells (the white blood cells that go haywire when someone has Follicular Lymphoma and other NHLs) function by attaching to invaders: bacteria, viruses, other things that don't belong in the blood. The BTK is the part of the B cell that keeps it alive. The body wants this to happen, so the B-cell can keep up its fight against invaders. Cancer, of course, happens when something in the cell tells it to stop dying and to keep multiplying.

So, some B-cells = healthy. Too many B-cells that won't die  = lymphoma.

Since the BTK is one of the things that keeps a cancer cell alive, a BTK inhibitor (like Ibrutinib) will tell the B-cell that it's OK to die. Normal B-cell levels and functions = no more lymphoma.

There are people who say Ibrutinib and other BTK inhibitors are the real game-changers in fighting NHL. As always, I will keep my optimism on the cautious side. It does a job on lots of different B-cell lymphomas (and there are a bunch of them), but it doesn't wipe them out completely, by any means. My guess is that in the next few years, Ibrutinib will be combined with some other treatments that attack the cells in different ways. So maybe not a game-changer on its own, but an important role player for the team. (The NBA All-Star game starts in a little while; the comparison seemed apt.)

Keeping that hope going.....

Friday, February 15, 2013

Getting My Goat

I'm working on a nice post on Ibrutinib, the BTK inhibitor, and the fact that it was just granted "Breakthrough" status by the FDA. Pretty significant. It's had some very early research done for Follicular Lymphoma, though at the moment the FDA is looking at Ibrutinib for Mantle Cell and some other lymphomas. I'll get to it soon.

To be honest, for the last week or so, it's been hard to write on the blog. It happens every now and then; I just don't feel like writing about cancer.

Which isn't to say I'm not thinking about it. I can't think of a single day in 5+ years when I haven't thought about cancer. But sometimes it's tough to get excited about it enough to write about it.

The good news, though, is that I go through these periodic dry spells when things are going well. When there are problems -- either with me, or in the world of cancer -- the writing comes pretty darn easily. It's when I'm too busy, too healthy, too tired, too focused on other things, that it's sometimes hard to find the time to do some exploring and type something up. I have to stop, at those times, and be thankful that I'm healthy enough to be so busy.

So, no cancer stuff today. Enjoy, instead, this video of goats screaming like humans.

More on that Ibrutinib news in a day or two.

Wednesday, February 13, 2013

Watson and Cancer

The supercomputer known as Watson is in the news again.

(Yes, now that I'm dug out of the snow, I can get back to thinking about cancer.)

Watson had actually been mentioned as a cancer fighter soon after he won on his Jeopardy appearance.  (He may have won, but he didn't do it with the kind of style that this kid did it with. You just can't program that kind of thing into a computer.)

The plan is to give Watson lots and lots of information:  1.5 million patient records and outcomes; 600,000 pieces of medical evidence; 2 million pages of text from medical journals and clinical trial records; and the nearly 800 entries from this blog. (I don't know if that last part is true, but they're welcome to them if the want them.)

Watson will then use all of this information to help diagnose lung cancer and make recommendations for treatment.

It makes sense. Even the best Tumor Board couldn't put all of its collective brain power to work at once, recalling everything they've known about cancer, to make a recommendation on a patient the way a computer could. There will be less arguing, if nothing else. (Dr. C told me long ago that, if you had 12 oncologists look at a patient, they'd come up with 13 different opinions.)

Of course, a computer can't necessarily take into account the kind of emotional, psychological, and spiritual needs of a patient, at least not from the data they say they will be feeding it. For a Follicular Lymphoma patient, especially, that seems pretty vital.

Monday, February 11, 2013

Snowed In

I line in Hamden, CT -- home of the National Weather Service's title for most snow in New England from Winter Storm Nemo. 40 inches.

It's a title that I would gladly relinquish.

No cancer news from me these last few days because I have been alternately shoveling out my own house, napping, shoveling some elderly neighbors, napping some more, and just staring at the wall and not thinking about snow.

I'll say this: if you've been hit by all of this snow, check in with your elderly and infirm neighbors. Shovel for them. Ask if they need anything. The cancer patients, especially -- their lives are stressful enough as it is. Give them one less thing to worry about.

More some time soon, when I'm better rested.

Friday, February 8, 2013

Follicular Lymphoma Perks

I found this post in a blog called Thinking Out Loud: A Cancer Blog, written by Michael Buller.

Buller is a fellow Follicular Lymphoma patient, and, it would seem, a kindred spirit when it comes to humor and positivity. (Also, in his 40's, and a runner.) And he did some watching and waiting, too.

It's interesting how each of us is unique, and yet, there are so many things that are the same for us. I find that oddly comforting.

Anyway, the post I found is called "Top 10 Perks of Being Treated for Follicular Lymphoma." He's on Bendamustine and Rituxan (and excellent choice), and seems to be doing well (this "Perks" link is from November; his most recent posts, from the last few days, indicate that he's just finished his B-R.)

I recommend some flipping through his blog.

Good luck, Michael. I hope the B-R is working for you.

Wednesday, February 6, 2013


There's been some really fascinating and important stuff written in the last few weeks on generic cancer drugs, and the potential problems that they can create -- and potential problems they can solve.

As the New York Times reports, drug companies are lobbying state legislatures to limit the creation of generic treatments, particularly drugs like Rituxan, which is not simply a bunch of chemicals, but something created from cells. The generic versions, some argue, are not the same thing as the real thing. They are often called "biosimilar," rather than "generic," because they are sort of the same thing, but not exactly the same thing. At least potentially.

In the meantime, the generic/biosimilars are coming closer to reality. At least 6 companies are working on biosimilars for Rituxan. And the FDA has approved a generic version of Doxil, used to treat several cancer, hoping to help with some of the shortages that have created problems over the last couple of years.

This is a pretty complex issue. On the one hand, generics and biosimilars might help end shortages and might lower the cost of treatment. On the other hand, there are issues of quality (are the biosimilars as effective as the originals?) and fairness (are the original companies given their due to recoup research costs?).

No easy answers, and certainly something that bears watching.

Monday, February 4, 2013

World Cancer Day

Today is World Cancer Day, a day devoted to increasing awareness of cancer prevention, detection, and treatment.

I'm not always all that excited about "awareness" stuff when it comes to cancer -- I assume anyone reading this is already more aware than they want to be -- but maybe you can learn something new, or pass on some information to a friend.

Some links to explore:

John Lechleiter's article from on acclerating efforts toward a cure. (Or a whole bunch of cures.)

Jeffery Srurchio on why cancer treatment is not a luxury.

Katie Couric on ways to make a difference on this day.

(And give Katie a break -- she's been through a lot. Not just the cancer stuff, but did you hear about her date with Larry King? Eeewwww.)

So do some reading, and raise your awareness, and make sure others do the same.

Sunday, February 3, 2013

What to Say

Oh, busy days, busy days.

I usually try to post every couple of days, and here it is on day 4 with no post. Meetings at work, driving the kids to and fro, and various other commitments. I've said it before -- I am eternally grateful to  have the opportunity to be so busy, and to have the good health to live up to it all.

Since I'm throwing around some happy thoughts, and since we're all getting ready for Big Football Game Whose Trademarked Name We Aren't Supposed To Use, I'll keep things positive and offer two related links.

The first is a little bit old, but it came across my Facebook feed a coupl;e of days ago. It's from USA Today's Nashville music critic, Brian Mansfield, a colon cancer survivor, and it's called "My Semicolon Life: What to Say to a Cancer Patient." Some good, solid advice in there, most of which revolves around trying to relate to the cancer patient and understand what he or she is going through.
 The most surprising thing on his list? "If I had to pick one cancer to have, it'd be yours." This is a variation on a statement that usually makes the "Things not to say" list: "If you have to cancer, you have a good one." But, as Mansfield points out, some people can pull this one off. They are people who have been there themselves, so they have something to compare it all to. And I think the wording is key: the person saying it putting herself right into it. There's an "I" in there, not just a "you." I think that matters.

The other link came to me from my brother, and it came to him from Dana Farber. (My brother, as long-term readers will know, has raised thousands of dollars for research at Dana Farber through his participation in the Pan Mass Challenge.) This one, from a couple of days ago, is called "Five Questions to Ask a Cancer Patient."  This one, too, offers some nice suggestions, from someone who realizes that he probably used to say the wrong thing a lot, and is now on the other side of the cancer line. One quibble: I wouldn't ask "What can I do?" because, as the author says, the answer will probably be No. And while it is nice to ask, I think the No comes not just from a reluctance to get help, but also sometimes because of a feeling of being so overwhelmed that the patient doesn't know what to ask for help with. Don't ask what you can do. Think about what they might need help with. Can I make you dinner? What do you feel like eating these days? Can I take your dog for a walk? Can I pick up your kids? Do you need anything from the grocery store? Give them some choices. It will give them a sense of what you are willing to do, and what they can ask you for.

And definitely ask how the caregiver is doing.

We see lots of articles on what not to say. It's nice to see some on the positive side of things.