NESN, the cable network owned by the Red Sox, featured a series last week on the life and career of Jon Lester, Red Sox pitching ace and Non-Hodgkin's survivor.
It's in 5 parts, but the best are probably Wednesday's take on his cancer battle, and Thursday's return to the majors, highlighted by his throwing a no-hitter.
The articles are pretty brief, and they don't go into a whole lot of detail, but they're a nice reminder of the role that Lester played for our family.
He was diagnosed and cured before I was diagnosed, so when we told the kids about what was going on with me, I was able to point to Lester and his success to ease Peter's fears just a little. I was sitting with Peter and John on the couch when we told the kids; when I mentioned Lester having NHL, Peter's whole body relaxed. He understood immediately that Lester was a symbol of hope.
And I remember the night Lester threw his no-hitter, just a few months later. The kids were in bed, and Isabel and I were flipping through channels. We checked out the Sox score just in time to see that Lester was about to start the ninth inning with a no-no. I ran upstairs to Peter's room and told him what was happening. As I ran back down, Peter said, "Can I come watch?" (Such a good boy. It was after his bed time.) "YES!" I said, and went downstairs with Peter following.
That was a good night.
And Lester's a good guy. It took him a while to warm up to the idea that he was a role model for people with NHL and other cancers, and while I understand that he doesn't want cancer to define him, I also appreciate that he's done some campaigning to raise awareness.
Pitchers and catchers report in less than two weeks. Go Sox. And good luck, Lester.
Monday, January 31, 2011
Saturday, January 29, 2011
Rituxan Maintenance
Yesterday, the FDA approved Rituxan Maintenance for Follicualr Lymphoma. This means that patients will be allowed to get Rituxan every six months after they are finished with a Rituxan-containing chemotherapy. The approval was based on the results of the PRIMA study, a phase 3 clinical trial with patients from all over the world. It meaured the effects of Rituxan maintenance after R-CHOP or R-CVP, and found that those infusions of Rituxan helped double the likelihood that the lymphoma would not get worse over two years.
It's always nice to have something like this that will help keep fNHL in check. It was something I asked Dr. R about after I was finished with my single-agent Rituxan treatment. We decided not to do it, partly because there's less evidence that it's effective after just Rituxan (as opposed to Rituxan + chemotherapy), and also because it went against our approach of doing the least amount necessary to keep things at bay. So I stuck with just observing -- basically, going back to watching and waiting -- rather than doing something more aggressive, even something as "unaggressive" as Rituxan.
So while this is excellent news, I don't think it's earth-shattering news. For one thing, it doesn't represent a new way of attacking fNHL -- just of keeping in in check. Also, lots of people have been doing Rituxan maintenance on their own, even without FDA approval (though I think it might be easier to get it paid for by insurance now).
So we'll call it good news, but keep the champagne in the bottle for something really good...
It's always nice to have something like this that will help keep fNHL in check. It was something I asked Dr. R about after I was finished with my single-agent Rituxan treatment. We decided not to do it, partly because there's less evidence that it's effective after just Rituxan (as opposed to Rituxan + chemotherapy), and also because it went against our approach of doing the least amount necessary to keep things at bay. So I stuck with just observing -- basically, going back to watching and waiting -- rather than doing something more aggressive, even something as "unaggressive" as Rituxan.
So while this is excellent news, I don't think it's earth-shattering news. For one thing, it doesn't represent a new way of attacking fNHL -- just of keeping in in check. Also, lots of people have been doing Rituxan maintenance on their own, even without FDA approval (though I think it might be easier to get it paid for by insurance now).
So we'll call it good news, but keep the champagne in the bottle for something really good...
Thursday, January 27, 2011
Snowpocalypse
Snowpocalypse: that's a the title of a piece from Salon today, showing photos and videos of the after-effects of last night's snow storm that hit the Northeast.
I really didn't need to see pictures. I'm living it.
Before, I was tired of having the kids home so much because of snow days. Tired enough to threaten to drive them to school whether it was in session or not. Now I'm just plain tired of the snow.
Really tired of it.
Like, tired enough to actually look up the DSM-IV (the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, 4th edition), to see if there's an official mental disorder related to hating snow. Apparently there isn't. Seasonal Affective Disorder is as close as I can find, but one of those cool light box hats isn't going to cure my ill.
It's more about the frustration of not knowing where to put the snow. "Where will we put it?" is supposed to be one of those polite, neighborly things you say when someone tells you that it's going to snow again, like saying "Hot enough for ya?" in the summer. But it's not just being polite. I have actually run out of places to put the snow. We got another 18 inches last night. We've now gotten more snow this month than in any other month in the history of the state.
The snow blower helps, to be sure -- it's much easier on the back than shovelling -- but this snow was just wet and heavy enough that the snow blower deposited it right on top of the already large snow banks lining the driveway. And so it was just wet and heavy enough to cause the banks to collapse. I don't know if Norse mythology has an equivelent of Sysiphus -- who was sentenced to push a rock up a hill, only to watch it roll back down, over and over again for eternity -- but if there is, then it must be some old Norwegian who pissed off the gods enough to make his snow bank fall back onto the space he just cleared, over and over again. After a while, you start to look for the little crack starting to form in the snow and you know you're going to be really sad in about 30 seconds.....
So the snow blower just wasn't the tool of choice for this storm. I just couldn't put the snow where I wanted it to go. For some of it, I needed the shovel, which let me walk a few steps and place the snow in whatever small area I could find that wouldn't collapse on me.
Which makes the snow blower kind of like traditional chemo: imprecise, but it does the job of clearing out the problem, even if it causes some side damage along the way. The shovel is like a second-generation monoclonal antibody, allowing a targeted attack, but not taking care of the problem completely.
(Isn't it impressive that I always find a way to bring it all back to cancer?)
I really didn't need to see pictures. I'm living it.
Before, I was tired of having the kids home so much because of snow days. Tired enough to threaten to drive them to school whether it was in session or not. Now I'm just plain tired of the snow.
Really tired of it.
Like, tired enough to actually look up the DSM-IV (the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, 4th edition), to see if there's an official mental disorder related to hating snow. Apparently there isn't. Seasonal Affective Disorder is as close as I can find, but one of those cool light box hats isn't going to cure my ill.
It's more about the frustration of not knowing where to put the snow. "Where will we put it?" is supposed to be one of those polite, neighborly things you say when someone tells you that it's going to snow again, like saying "Hot enough for ya?" in the summer. But it's not just being polite. I have actually run out of places to put the snow. We got another 18 inches last night. We've now gotten more snow this month than in any other month in the history of the state.
The snow blower helps, to be sure -- it's much easier on the back than shovelling -- but this snow was just wet and heavy enough that the snow blower deposited it right on top of the already large snow banks lining the driveway. And so it was just wet and heavy enough to cause the banks to collapse. I don't know if Norse mythology has an equivelent of Sysiphus -- who was sentenced to push a rock up a hill, only to watch it roll back down, over and over again for eternity -- but if there is, then it must be some old Norwegian who pissed off the gods enough to make his snow bank fall back onto the space he just cleared, over and over again. After a while, you start to look for the little crack starting to form in the snow and you know you're going to be really sad in about 30 seconds.....
So the snow blower just wasn't the tool of choice for this storm. I just couldn't put the snow where I wanted it to go. For some of it, I needed the shovel, which let me walk a few steps and place the snow in whatever small area I could find that wouldn't collapse on me.
Which makes the snow blower kind of like traditional chemo: imprecise, but it does the job of clearing out the problem, even if it causes some side damage along the way. The shovel is like a second-generation monoclonal antibody, allowing a targeted attack, but not taking care of the problem completely.
(Isn't it impressive that I always find a way to bring it all back to cancer?)
Wednesday, January 26, 2011
A Nice Combination
From the most recent issue of the medical journal Blood comes an article called "The combination of bendamustine, bortezomib and rituximab for patients with relapsed/refractory indolent and mantle cell non-Hodgkin lymphoma." The article describes the results of a phase 2 clinical trial that combined Bendamustine (Treanda), Bortezomib (Velcade), and Rituxan. Some very positive results from this one.
The article makes the point that all three treatments have been effective and are well-tolerated on their own, and that they act in different ways: Bendamustine is kind of a traditional chemotherapy; Bortezomib works by keeping cells from removing their own waste products and thus killing themselves; and Rituxan works by...well, no one is sure why it works, exactly, but it works. And it's different from the other two. So the clinical trial wanted to see what would happen if you combined the three treatments. Makes sense -- attack the cancer in three different ways. Mere months ago, another researcher suggested the same kind of strategy with CVP, Rituxan, and Zevalin. Same philosophy (hit the cancer cells from different directions, and increase your chances of not missing any), but with maybe just a tad less toxicity than you'd get from CVP.
In a nutshell, in this small study (phase 2 trials usually are small), 30 patients were given a specific course of the three treatments. Nearly all had some kind of response, and about half had a Complete Response. Very promising, especially since only one patient had significant side effects. See the link for more detail.
This trial went so well that a new phase 3 trial has opened up in multiple centers all over the country. I haven't seen the description yet, so I don't know how many patients they plan to enroll, or where it will be conducted, but it looks very promising. In my opinion (as an non-expert, very interested observer), I think this kind of combination of treatments is likely to be where treatment for Follicular NHL is headed. Until someone comes up with spomething better, anyway....
The article makes the point that all three treatments have been effective and are well-tolerated on their own, and that they act in different ways: Bendamustine is kind of a traditional chemotherapy; Bortezomib works by keeping cells from removing their own waste products and thus killing themselves; and Rituxan works by...well, no one is sure why it works, exactly, but it works. And it's different from the other two. So the clinical trial wanted to see what would happen if you combined the three treatments. Makes sense -- attack the cancer in three different ways. Mere months ago, another researcher suggested the same kind of strategy with CVP, Rituxan, and Zevalin. Same philosophy (hit the cancer cells from different directions, and increase your chances of not missing any), but with maybe just a tad less toxicity than you'd get from CVP.
In a nutshell, in this small study (phase 2 trials usually are small), 30 patients were given a specific course of the three treatments. Nearly all had some kind of response, and about half had a Complete Response. Very promising, especially since only one patient had significant side effects. See the link for more detail.
This trial went so well that a new phase 3 trial has opened up in multiple centers all over the country. I haven't seen the description yet, so I don't know how many patients they plan to enroll, or where it will be conducted, but it looks very promising. In my opinion (as an non-expert, very interested observer), I think this kind of combination of treatments is likely to be where treatment for Follicular NHL is headed. Until someone comes up with spomething better, anyway....
Monday, January 24, 2011
First Day of Classes
Saturday, January 22, 2011
Novel Treatments for fNHL
The journal Hematology has a nice piece out in their current issue, called "Novel Agents for Follicular Lymphoma." While the title calls the treatments "novel," there isn't necessarily much that's completely new in this piece; this is one of those articles that kind of sums up the stuff that's recent enough to be called "new."
All of my pals and heroes are there: Rituxan and other monoclonal antibodies, both rodent-based and human-based; radio-labeled monoclonal antibodies (RIT); Bendamustine/Treanda, which is the treatment that, it seems, I may try next when I need to be treated; bortezomib/Velcade, the proteosome inhibitor that causes cancer cells to kill themselves off; and Lenalidomide, which targets the micro-environment surrrounding the cell, on the theory that what exists in this space is as much of a factor as what's in the cell itself.
The conclusion to the article is brief, but sums up very nicely the problems that we (patients, doctors, and researchers) will face in the next few years: we have a bunch of treatments that, individually, target cancer in many different ways. It is likely that the best way to beat it (or beat it up pretty good) will be to combine different treatments in a kind of multi-pronged attack. The trick will be to figure out how to best combine the treatments -- not just in a broad way that can be used on all fNHL patients, but in the way that targets each individual patient's particular cancer.
It's a challenge, to be sure, but it's an exciting one. And one that's not at all unreasonable to overcome.
All of my pals and heroes are there: Rituxan and other monoclonal antibodies, both rodent-based and human-based; radio-labeled monoclonal antibodies (RIT); Bendamustine/Treanda, which is the treatment that, it seems, I may try next when I need to be treated; bortezomib/Velcade, the proteosome inhibitor that causes cancer cells to kill themselves off; and Lenalidomide, which targets the micro-environment surrrounding the cell, on the theory that what exists in this space is as much of a factor as what's in the cell itself.
The conclusion to the article is brief, but sums up very nicely the problems that we (patients, doctors, and researchers) will face in the next few years: we have a bunch of treatments that, individually, target cancer in many different ways. It is likely that the best way to beat it (or beat it up pretty good) will be to combine different treatments in a kind of multi-pronged attack. The trick will be to figure out how to best combine the treatments -- not just in a broad way that can be used on all fNHL patients, but in the way that targets each individual patient's particular cancer.
It's a challenge, to be sure, but it's an exciting one. And one that's not at all unreasonable to overcome.
Thursday, January 20, 2011
Aaron Rodgers
I don't know how much play this story got on TV or in newspapers or anyplace else, but I heard about it on Yahoo! Sports, in a piece called "Cancer Patient Snubbed by Rodgers Comes Out in His Defense."
As you can see in the story, Aaron Rodgers, quarterback for the Green Bay Packers, was walking to a plane when he ignored a woman who was seeking an autograph. As you can see in the video, the woman is obviously a cancer survivor -- dressed all in pink, with very short hair. The video also shows at least one of Rodgers's teammates stopping to sign her shirt.
And so begins the controversy: Rodgers being mean to a woman with cancer. Apparently, Mike Florio from NBC Sports thinks he treated her "like a panhandler with leprosy."
Oh, please.
As the title of the article makes clear, the woman was OK with the "snub" -- Rodgers had actually autographed stuff for her before. And even if he hadn't, as the woman herself says, pro athletes have the right to sign or not sign autographs for whomever they choose.
Florio (who actually apologized later on for jumping on Rodgers before he knew all the facts) tries to make this about how to treat fans -- any fans -- but really, he means fans with cancer.
And that's where I have a problem.
Now, I'm all for famous people doing nice things for people with cancer. Look back at some early Lympho Bob posts: I got free stuff from the band Dropkick Murphy's, and a letter from Red Sox manager Terry Francona. And I was, and am, deeply appreciate of both of those gestures. They did those nice things for me because they knew I and my family were going through a rough time, and we needed the pick up. And it worked.
But if I had ever made such a request on my own (I got the stuff from Dropkick and Tito because nice people asked them to do those things for me), and the response I got was "I wish I could help, but we get so many requests that it's impossible to fufill them all," then I would have been OK with it.
Being outraged by such a response on my behalf, the way lots of people were outraged by the Rodgers situation, would have also been a nice gesture. But a little part of me thinks that the attitude that people had toward her was mostly about protecting the fragile cancer patient.
Watch the video. That lady's not too fragile.
The story calls her a "cancer patient." She's a cancer survivor.
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