Good Bexxar News

This year's American Society of Hematology (ASH) Conference takes place in a week or so, and they've already put up abstracts for the presentations on research for various blood disorders. I'm sifting through it all, and I'll try to comment on some of the more interesting ones. I may end up waiting until after the conference; that's when drug companies start putting out press releases, and medical web sites start commenting on important items from the conference. All of that helps put it in perspective.


But there are a few really good ones that are worth posting now, inlcuding this one: Since I've been giving Bexxar some love lately, it's nice to see positive results.


Here's the abstract from the ASH conference web site. The presentation is called "Tositumomab and Iodine I-131 Tositumomab for Previously Untreated, Advanced-Stage, Follicular Lymphoma: Median 10 Year Follow-up Results," and it discusses how well a group of Bexxar patients from 1996 to 2009 have been doing.


Very encouraging results. A total of 76 patients (all but one had Follicular NHL) were given Bexxar. 97% of the patients achieved a response, with 75% achieving a complete response (all traces of the lymphoma were wiped out by the Bexxar). Patients had been given Bexxar anywhere from 1 to 12 years before the results were measured, with a median of 10 years (that is, half had taken it more than 10 years ago, and half less than 10 years ago).

The median duration response was 6 years (half of the patients didn't get worse after that time). 40% of patients were progression-free after 10 years. For that 75% who had a complete response, the median progression-free state was almost 11 years.


Pretty good numbers, I'd say; lots of patients have done very well over the long term with Bexxar. The study isn't perfect (there's a pretty wide range of years involved, making it harder to really measure long-term impact; it's a single-arm study, which means they didn't compare Bexxar with some other treatment in the same study), but it's encouraging.


More evidence for people to consider RadioImmunoTherapy, if nothing else.

Thanksgiving Time

Happy Thanksgiving, everyone.

I hope everyone is taking the time to truly think about what you are thankful for.

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I looked back at my blog post from last Thanksgiving -- my first Thanksgiving with cancer. I have to say, I'm thankful for the same things as I was then: my doctors, and other healthcare givers; NHL researchers; my job; music; my support group; my blog readers -- those I know and those I don't know; my parents; my brother; my kids; my wife Isabel.

If anything, I'm twice as thankful for all of that this year, having had another year to appreciate them all.

This year, I want to add to that list. I'm thankful for time. Time, for me, has been a gift.

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"Cancer victims who don't accept their fate, who don't learn to live with it, will only destroy what little time they have left." -- Ingrid Bergman

If you've read Lympho Bob in the past few weeks, you know how I feel about being called a "cancer victim." But, hey -- we're talking about the beautiful Ingrid Bergman, so I'm not going to harp on her terminology. The more important thing is what she has to say about time.

Maybe Bergman was a "victim"; when she died, cancer was still something that didn't get talked about in public too much. Breast cancer, especially, was something women were made to feel shameful about. So in that way, she was truly a victim -- of the time she lived in. And she made that statement when she did, indeed, have little time left.

Which is where she and I are different, I guess. I've said before that I have "the luxury" of having an indolent, slow-growing cancer. Maybe "luxury" is a little bit of an exaggeration. There's nothing terribly luxurious about cancer, no matter what the type. But it's a whole lot different from, say, having Burkitt's Lymphoma -- fairly rare, and very aggressive. I think about Joe Andruzzi sometimes; he played for the New England Patriots after graduating from Southern Connecticut State. When he was diagnosed with Burkitt's, he was given just a few hours to decide what to do. Just a few hours. Burkitt's Lymphoma is so aggressive, the tumors can double in size in 24 hours. I don't think my nodes have doubled in size in two years....

So I'm thankful to have had time. I've had time to learn more about what's going on with my body, with the world of lymphoma, with the world in general and how it affects me as a cancer patient. I don't know how I'd react to all of this if I had four hours to decide my fate. I'm happy I've had time. I work better that way, when I can know what to expect and think things through. I like to look down the road and know what's coming.

When I turned 40, some colleagues wanted to have a surprise party for me. Isabel warned them that I don't like surprises. I don't know if I don't like surprises -- I just don't like unhappy ones. (They pulled off the surprise party, and it was a happy surprise.) I know lots of people who wouldn't want to know what's in store, wouldn't want to think about it until they had to. I'd rather be prepared. Expect the worst and hope for the best.

So I'm thankful that I've had the time to do all of this the way I'd want to.

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It's a cliche that no one knows how much time they have, and like most cliches, it's true. I've seen a ton of quotes from cancer survivors, cancer patients, cancer victims, who say that we have to live for today, and live every day to the fullest. It's a lesson that cancer patients are supposed to learn.

I'll be honest -- I have a hard time doing that. Maybe that's tied in to the whole "luxury of time" thing -- if I thought I had X number of days left, I'd try skydiving, or travel to the Taj Mahal, or do whatever else Jack Nicholson and Morgan Freeman did in The Bucket List. But I don't feel that kind of desperation. (I'm thankful for that, too.)

Sometimes I wonder if I should be doing more with my time -- if I should be acting more like a cancer patient is "supposed to," relishing every moment of every day. If I'm thankful for time, I shouldn't be wasting it, right?

I haven't exactly made a conscius decision NOT to be that way, to not smell every flower I pass, and run through every pile of leaves.

But a few months ago, I did decide that I would try to make one small change, one small way of making sure I don't waste the day. It isn't something I do every day, but I try not to shy away from it if the opportunity arises.

It was last March. I was driving home from work, listening to ESPN radio. They were replaying Jim Valvano's famous "Don't give up, don't ever give up" speech from the 1993 ESPY awards; it was the anniversary of his having given the speech. Valvano was a college basketball coach, whose underdog North Carolina State team won the national championship in 1983. Valvano went on to become a (very funny) college basketball commentator on TV. In 1992, he found out he had bone cancer, and that it had metastasized. The following March, he was awarded the Arthur Ashe Courage and Humanitarian award at the ESPYs, and that's where he gave his speech. If you've never heard it, or haven't heard it in a while, it's worth watching.

At some point in his speech, the teleprompter signals to him that he has 30 seconds left to speak. Valvano laughs and says, "They got that screen up there flashing '30 seconds,' like I care about that screen. I got tumors all over my body and I'm worried about some guy in the back going '30 seconds'." I was fighting back tears in the car.

Early on in the speech, he says this:

"To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special."

I remember how much that struck me -- laugh, think, and cry. That really is a full day.

And, when you think about it, while that makes for a full day, it's not even a whole day. Thinking is easy; I do that anyway, it's part of the job. I can take five minutes to sit and think, and some days, it seems like five minutes is about all I have. Laughing is easy, too, at least for me, anyway. Takes no time at all -- a 30 second Family Guy clip on Hulu.com usually does the trick for me.

Crying? That's tougher. I can't say I cry every day. But I don't avoid it. And crying doesn't take much time, either. The support group always has plenty of inspirational stories, links, videos -- some sad, some joyfully moving. Like things to make you laugh, there's no shortage out there of things to make you cry -- a two minute video, a few tears, and you're done.

Add it all up, and it's about ten minutes. Ten minutes and you have what Jimmy V called "a full day."

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So maybe I'm not able to do the "cancer appreciation" thing very well, living every moment to its fullest. But I can give ten minutes a day, most days, for a thought, a laugh, and a cry. Even if I do "waste" the rest of the day, I haven't wasted time.

I'm too thankful for time to do something like that.

Time on Fire

As I mentioned a few posts ago, I've been reading Evan Handler's book Time on Fire: My Comedy of Terrors. Handler is an actor, maybe most recognizable as the bald lawyer in Sex and the City. That's what I saw him in, anyway, at about 3:00 in the morning when I couldn't sleep one night about six months ago.


Handler was 24 years old when he was diagnosed with Acute Myelogenous Leukemia, soon after having gotten a part in a Neil Simon play on Broadway. The book goes through about six years of his life, from the diagnosis, to the intense chemo he received, to his attempts to get his life back together, to his relapse and auto stem cell transplant, and eventual recovery. It's an inspiring book in many ways, an instructive book for sure, and a very hard book to read at times, especially for a cancer patient -- he's a playwright as well as an actor, and the detail he uses in some scenes certainly lets you feel what he's going through.


One of the main themes of the book is Handler's need to do for himself (while he relied heavily on others, and resented them for it). Handler names actual names -- he trashes certain doctors and nurses for the crappy way they treated him, and he has pretty much nothing good to say about Sloan-Kettering in NYC (unlike Johns Hopkins in Baltimore, where he was treated wonderfully).


He attributes much of his survival to his own pushiness, demanding that certain things get done in a certain way, and getting a reputation as a "difficult patient"along the way. But this is where it was most instructive. He tells stories of being in the hospital and having nurses aides take his temperature with glass thermometers (he was post-transplant, and prone to any otherwise harmless infection, so he had his own thermometer in a glass of alcohol by his bed). The aides kept the thermometer in for 30 seconds, not the 4 minutes that would give an accurate reading. They didn't want to stick around his room for 4 minutes, they told him. So he took his own temp and kept his own chart, letting the doctors know when he was getting a fever, a sign that he might have an infection and might need antiobiotics to potentially save his life. (The doctors, instead of insisting that the aides do a better job, told him to just keep his own chart, which they followed instead of the official chart).


I wouldn't expect everyone to do the kind of research I do on NHL, reading articles in medical journals, being up on which treatments are moving from stage II to stage III clinical trials, that sort of thing. But the kind of basic observation that Handler did, and the insisting on a certain level of care (and a certain level of compassion) seem like the kind of thing anyone can do. And should do.


The book is downright funny in lots of places -- Handler is a very good writer. Early on in his treatment, he describes his attempts to, shall we say, "get romantic" with his girlfriend; it was their attempt to celebrate life and not conform to people's expectations of a cancer patient. But he was also hooked up to "twenty pounds of liquids" through lines in an IV stand, and he describes the two of them getting tangled up in all of those lines as they are getting intimate in a bathroom, the on;y place they could get some privacy in the hospital. Very funny stuff.


But sad, too, especially as he gets into detail about the after-effects of chemo and the transplant, and the physical and emotional toll the experience took on him. Those parts were hard to read sometimes.


Isabel wonders why I read books like this, especially when they can be so hard. At one point, I said "Wow" out loud while I was sitting next to her, reading , and she asked what I was reacting to. I told her Handler was talking about getting a 106 degree fever. It's that kind of thing that makes her wonder why I read books like this. I told her, "Because he survived."


I read books like this because I'd rather know what's potentially in store. And if I haveto read about that kind of thing, I'd rather read about it from a survivor, someone who came through stronger.


One warning for anyone who's considering reading it: this is an old book, written in 1996. At the end, Handler points out that much had changed in those few years from the mid- to late-80's, when he had his transplant, particularly in ways that doctors were able to bring down the chances of fatal infection considerably. Can you imagine how much has changed since 1996, when he wrote that? Which is an even better reason to read it -- as bad as his experiences were, twenty years ago, we've come so far in treating blood cancers.

Shocked -- SHOCKED!

....One of my favorite lines from Casablanca. If you don't catch the reference, shame on you -- go rent Casablanca.

The line came to me because of a recent press release from Cornell on Heat Shock Protein Inhibitors. One such inhibitor, called PU-H71, may block a key mechanism that allows Non-Hodgkins Lymphoma cells to do their evil thing.

Let's step back a moment. What are Heat Shock Proteins, first of all? HSPs, as they are called, are proteins in cells that allow the cell to minimize damage from stress brought on by heat, medicines, starvation, etc. They are good things -- they keep cells from dying when bad things happen to them. Researchers have known about HSPs for a long time, and study them to better understand how to keep cells (and people) from dying.

But, like everything about cell mechanisms that is good and protective, HSPs cause problems (like cancer) when they do their job a little too well.

Heat Shock Protein Inhibitors, as the name implies, inhibit HSPs, and keep them from protecting cells (like cancer cells, whch we don't want to be protected). Here's a nice article published about a month ago that explains what HSP Inhibitors are, and how researchers are using one called PES to block an HSP called HSP70.

Now, on to the NHL news from Cornell. Researchers found that an HSP called HSP90 seems to join up with and protect a protein called BCL6, which researchers know is present in a common, aggressive NHL called Diffuse Large B-Cell Lymphoma (DLBCL). The Cornell researchers used an HSP Inhibitor (PU-H71) to block the HSP90 from helping out the BCL6; without it, the cancer cells are unprotected, and die.

So far, the HSP inhibitor has been very effective in laboratory models and animals tests. The next step is to start clinical trials with humans.

So it will be a while before it's available widely -- assuming it is as effective as it seems to be. But it's another reason for hope, and another possible triumph for micro-environment research. As the other linked article on that HSP70 shows, this could be a very important trend for research on lots of cancers. Very cool stuff.

Webcast

On Wednesday night, Patients Against Lymphoma posted another segment of Lymphomation Live, their weekly webcast on topics related to lymphomas of all types. This week's topic was an especially relevent one for me: Indolent Lymphomas.


The guest was Dr. Mitchell Smith of the Fox Chase Cancer Center in Philadelphia.

If you want to listen to the show, click here. It's about an hour long. The link near the bottom of the page might not work, so you can access it from the blue box at the top left. Also, be warned: at a bout the 12 minute mark, the host loses the connection to the guest, and it comes back just before the 18 minute mark. It was recorded live -- skip those 6 minutes and deal with it.


A few things that Dr. Smith said that stood out for me:


*I liked that he said that, with slower-growing-but-harder-to-cure indolent lymphomas, researchers need to be "smarter, not stronger." More and nastier chemo won't do the job. Researchers are working on lots of ways to outsmart indolent lymphomas. Smith, a researcher himself, is excited about the work being done with antobodies (hopefully, even more effective than Rituxin), and genetics-based microenvironment research.


* Smith talked about the differences between the different grades and stages of indolent lymphomas, and about what is called the FLIPI index. FLIPI stands for Follicular Lymphoma International Prognostic Index. The FLIPI index is a very rough guideline that takes several different factors into consideration in helping doctors and patients determine how aggressively to treat fNHL. I've read about FLIPI a few times in the last year, and thought about posting something about it. But, really, it's one of those things that can get people panicked, getting them to think they are automatically worse off than they probably are. More numbers that don't mean anything directly to an individual. Smith thinks likewise.


* Smith addressed the idea of indolent lymphomas being incurable. Interesting take: it's possible that we've already found a cure. But we won't know that for another 25 years, when lots of people have been in remission for that long. Then we can look back and say, "What we did in 2000 was actually a cure." Another reason I don't get too caught up in the idea of it being "incurable."


*He discussed Watch and Wait, too. He's one of those doctors who stiull believes that W&W is a good idea (not all do). He went through the usual arguments for Waiting, but he added another one: getting some treatments now might make you ineligible for some treatments that come down the chute later on. I also thought it was interesting that he said, in his expereince, it takes about 6-12 months for a "Waiter" to get used to the idea, but it gets easier when we realize we're doing OK, and we learn to trust our doctor.


*He gets into some current clinical trials, especially on the kind of biological treatments that so many specialists are excited about. "Maybe," he says, "some day, chemo will be a thing of the past." More effective, less toxic treatments? Amen to that.

Betsy and PAL are doing a really nice job with these webcasts; they're worth checking in on every week.

Happy Birthday, Brother

Happy Birthday wishes to my dear brother, with no wise-guy comments from me, like last year (and last week).

For my wonderful brother, who took the high road and promised not to say bad things about me in the Comments section of the blog, some Three Stooges.

The boys get hired to help prepare for a big birthday party -- Curly shaves some ice, then stuffs a turkey, does some dancing, and then helps Moe and Larry make and serve the cake:




And if you wanted the more traditional "Happy Birthday" song, you can get it here:



Hope you have a happy day, brother. See you soon.

Been a While...

I don't usually like to go this long between blog posts. If it's more than about four days, I start getting phone calls and e-mails from people wondering if I'm OK. I haven't gotten any of those calls yet, but I don't want to push my luck. My apologies -- I'm fine, but I've been busy.

On Thurdsay, I had kind of a breakthrough with the research I've been doing, and I've been focusing a lot of my energy (and thoughts) on the subject. I'm pleased that my sabbatical hasn't been a waste. (Not that it had been a waste up to this point anyway -- I have already written and presented a well-received conference paper, and written and had approved a proposal for a new course.)

I've also spent the last week or so reading Evan Handler's book Time on Fire: My Comedy of Terrors. A few weeks ago, I linked to a PBS show on talking to your doctor, which included an interview with Handler, an actor who fought leukemia when he was 24 years old. Fascinating book. I still have a couple of chapters to go; I'll write about it in a few days.

I'll leave you with this:

Blogs are supposed to include lots of links, and I do my best to connect readers to other experiences. In about a week or so, a new set of 5 very special bloggers will be going online. They are part of Proctor and Gamble's project called "On The Go."

P & G will be sponsoring a public restroom in Times Square in NYC, through its Charmin brand, through the holiday shopping season, beginning November 23.

In a few days, they will finalize their choices for the five "On The Go Ambassadors," who will provide a full social media experience by providing us with "a daily peek inside the cleanest public restroom in Times Square," with updates through Blogger, Twitter, Facebook, flickr, and (God help us) YouTube. Links to all will be available through OnTheGo.com.

I wish my soon-to-be fellow bloggers much luck.