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.
Monday, January 17, 2011
Rob Lowe
The actor Rob Lowe has launched a campaign to make cancer patients more aware of a common and potentially dangerous side effect of chemotherapy: infections. Chemo typically kills off white blood cells, which act as the body's natural way to fight off infections. Thus, chemo can make cancer patients more prone to infections that their bodies can't fight off.
Lowe is part of a campaign called "By My Side," which urges cancer patients to do things like join support groups and be aware of issues like infections. The campaign is supported by Amgen, which makes the drug Neulasta, which helps restore white blood cells after chemo more quickly than they would have on their own.
Lowe's father is a Non-Hodgkin's survivor, which is what got Lowe so involved in all of this. Nice that he's using his celebrity status to do something good.
****************************
While Lowe is most famous for being part of the "Brat Pack" in the 1980's, starring films like St. Elmo's Fire with other young people, and for his role in The West Wing, I think Isabel and I will always remember him as Alex in the 1990 film Bad Influence. Here is a summary of the film, courtesy of a user of IMDb:
Michael, a wimpy young executive, is about to get pulverized by a jealous boyfriend in a bar when a handsome, mysterious stranger steps in--and then disappears. Later that night, while jogging, Michael runs into the stranger on a pier. He introduces himself as Alex, and the two go out to an under- ground club. Within a matter of days, Alex wheedles his way into Michael's life and turns it upside down, and Michael doesn't realize that Alex is a dangerous sociopath until it's too late.
It's as awesomely horrible as it sounds. I wish I could find a video clip of the best/worst scene in the movie: Rob Lowe's character Alex coaxes his new pal Michael to admit out loud just how much Michael hates his boss. Michael eventually does so. Alex then insists that they toast the hated boss. Michael reluctantly does so. Alex then knocks the shot glass out of Michael's hand, berating him, "Are you the kind of man who toasts his enemies?!"
None of you will truly appreciate that, except Isabel; that alone makes it worth mentioning.
Lowe is part of a campaign called "By My Side," which urges cancer patients to do things like join support groups and be aware of issues like infections. The campaign is supported by Amgen, which makes the drug Neulasta, which helps restore white blood cells after chemo more quickly than they would have on their own.
Lowe's father is a Non-Hodgkin's survivor, which is what got Lowe so involved in all of this. Nice that he's using his celebrity status to do something good.
****************************
While Lowe is most famous for being part of the "Brat Pack" in the 1980's, starring films like St. Elmo's Fire with other young people, and for his role in The West Wing, I think Isabel and I will always remember him as Alex in the 1990 film Bad Influence. Here is a summary of the film, courtesy of a user of IMDb:
Michael, a wimpy young executive, is about to get pulverized by a jealous boyfriend in a bar when a handsome, mysterious stranger steps in--and then disappears. Later that night, while jogging, Michael runs into the stranger on a pier. He introduces himself as Alex, and the two go out to an under- ground club. Within a matter of days, Alex wheedles his way into Michael's life and turns it upside down, and Michael doesn't realize that Alex is a dangerous sociopath until it's too late.
It's as awesomely horrible as it sounds. I wish I could find a video clip of the best/worst scene in the movie: Rob Lowe's character Alex coaxes his new pal Michael to admit out loud just how much Michael hates his boss. Michael eventually does so. Alex then insists that they toast the hated boss. Michael reluctantly does so. Alex then knocks the shot glass out of Michael's hand, berating him, "Are you the kind of man who toasts his enemies?!"
None of you will truly appreciate that, except Isabel; that alone makes it worth mentioning.
Saturday, January 15, 2011
Diagnosiversary
Yup -- three years today that I was diagnosed.
And one full year since my first Rituxan treatment. It's double the fun today!
Isabel and I celebrated by going to breakfast. I had hoped we could have repeated my one year diagnosiversary celebration, when we brought the kids to school, went back to bed, and went to a noon movie, sneaking Subway sandwiches into the theater under our coats, in direct violation of posted theater rules. Alas, Isabel is chaperoning John's play practice at 1, and Peter has a basketball game at 7, so we couldn't do a celebratory lunch or dinner. Breakfast at the diner was the best we could do, and the craziest it got was that I ordered the full stack of pancakes instead of a short stack. (Though I went with blueberry pancakes so I could sneak in some antioxidants.)
My wife finds the whole idea of "celebrating" this day a little, well, sick. Getting a cancer diagnosis isn't exactly something worth celebrating, in her opinion.
I, of course, agree with her completely.
Which is why we're not celebrating the diagnosis, or anything else that happened on January 15, 2008.
We're celebrating the 1,095 days that have passed since then.
What's to celebrate? How about still being alive three years after I was diagnosed. There were days, early on, when I doubted that would be the case. Some very dark days. But those dark days are over. That's worth celebrating, too.
How about celebrating Rituxan? How many lives has Rituxan saved, or extended, or made more bearable in ten or twelve years? Pretty amazing to think about. I'll celebrate the people who came up with and perfected and tested Rituxan. Hats off.
For that matter, how about all the research that's gone on in three years? I'll bet I could name a dozen significant advances in NHL treatment that have taken place in the last three years -- some promising breakthroughs that are still in early stages, some approvals for new treatments, some clinical trials that have shown that treatments were improved. Incredible advances have taken place in just 3 years, let alone the twelve years that we call "The Rituxan Era." At this rate, some very special things are going to happen in NHL research in my lifetime -- and they will make it a long lifetime. Worth celebrating? Damn straight it is.
And all this celebrating doesn't even consider my own personal and professional successes, and Isabel's, too, and the great things that have happened to our kids. It's been a good three years, all things considered. We're happy, and, for a cancer patient, I'm pretty healthy.
So today is a day for celebrating.
I ordered a side of corned beef hash along with my tall stack of pancakes.
Because I could.
And one full year since my first Rituxan treatment. It's double the fun today!
Isabel and I celebrated by going to breakfast. I had hoped we could have repeated my one year diagnosiversary celebration, when we brought the kids to school, went back to bed, and went to a noon movie, sneaking Subway sandwiches into the theater under our coats, in direct violation of posted theater rules. Alas, Isabel is chaperoning John's play practice at 1, and Peter has a basketball game at 7, so we couldn't do a celebratory lunch or dinner. Breakfast at the diner was the best we could do, and the craziest it got was that I ordered the full stack of pancakes instead of a short stack. (Though I went with blueberry pancakes so I could sneak in some antioxidants.)
My wife finds the whole idea of "celebrating" this day a little, well, sick. Getting a cancer diagnosis isn't exactly something worth celebrating, in her opinion.
I, of course, agree with her completely.
Which is why we're not celebrating the diagnosis, or anything else that happened on January 15, 2008.
We're celebrating the 1,095 days that have passed since then.
What's to celebrate? How about still being alive three years after I was diagnosed. There were days, early on, when I doubted that would be the case. Some very dark days. But those dark days are over. That's worth celebrating, too.
How about celebrating Rituxan? How many lives has Rituxan saved, or extended, or made more bearable in ten or twelve years? Pretty amazing to think about. I'll celebrate the people who came up with and perfected and tested Rituxan. Hats off.
For that matter, how about all the research that's gone on in three years? I'll bet I could name a dozen significant advances in NHL treatment that have taken place in the last three years -- some promising breakthroughs that are still in early stages, some approvals for new treatments, some clinical trials that have shown that treatments were improved. Incredible advances have taken place in just 3 years, let alone the twelve years that we call "The Rituxan Era." At this rate, some very special things are going to happen in NHL research in my lifetime -- and they will make it a long lifetime. Worth celebrating? Damn straight it is.
And all this celebrating doesn't even consider my own personal and professional successes, and Isabel's, too, and the great things that have happened to our kids. It's been a good three years, all things considered. We're happy, and, for a cancer patient, I'm pretty healthy.
So today is a day for celebrating.
I ordered a side of corned beef hash along with my tall stack of pancakes.
Because I could.
Wednesday, January 12, 2011
It's been a busy, fun week, and it's only Wednesday.
Monday, John found out that he won a role in his school's play, Bye Bye Birdie; he's been cast as Harry MacAfee, a fairly major role. Very impressive, given that it was the first part he'd ever tried out for. We credit his excellent singing voice and willingness to make a fool of himself. (And I say that as high praise.) Harry MacAfee (played by Paul Lynde in the original movie) is the kind of part that was made for John -- it gives him a chance to show off his exuberant goofiness. We can't wait to see him in action.
Monday night, Isabel and I went to Parents' Night at Peter's high school of choice. Hard to believe he's off to high school next year. While we were there, Peter was playing basketball for his school team. A good night: 5 points, 4 rebounds, and 2 assists in a 35-14 victory. He always plays well when we aren't there to see him.
And today, we got hit with at least 24 inches of snow (we saew on the news that a neighboring town got 27 inches), most of it falling between midnight and 7am. I had to dig out a path for Strudel to go to the bathroom this morning. The snow was taller than she was, which really threw her; she wanted to jump around in it, but she couldn't actually get into it. It was all very nice for the kids to get a day off, but it meant three and a half hours of clearing the snow. (And that included two adults, three kids, and a snow blower working at it.) We've had about 3 feet of snow in the last week or so, and we have just about run out of places to put it. We managed to pile a lot of snow next to the back deck, which allowed the kids to do some sledding right in the back yard, launching themselves from the deck railing:
But now Isabel and I are sore, and even a little Kahlua in our hot chocolate hasn't helped.
Which means I'm too tired for cancer news. Try again tomorrow or the next day....
Monday, January 10, 2011
Showing Off
As I said in my last post, I can be obnoxious with Dr. R, showing him up with my knowledge of research in Follicular NHL, to the point where he is now apparently trying to "pre-empt me" by anticipating my questions. Actually, I haven't tried to show him up in a while -- I might think those thoughts, as I did last week, but I don't say them out loud anymore. No sense in penalizing him for not being as obsessed as I am with fNHL when he has about 50 other blood cancers to pay attention to.
So I'll show off to you instead.
About three weeks ago, Patient Power and Patients Against Lymphoma put out a couple of videos featuring Dr. Jane Winter of Northwestern University. Both deal with issues that I thought about bringing up to Dr. R, but bit my tongue instead.
The first deals with the Rituxan vs. Watch and Wait issue that I mentioned in the last post (and which I had talked about a few weeks ago, while the ASH conference was going on). The ASH presentation showed evidence that treating with Rituxan immediately, rather than watching and waiting, results in improvements in the time needed before the next treatment. Dr. Winter has an interesting take on this study, and calls its conclusions (though not its results) into question: she thinks too much Rituxan too early might lower its effectiveness when combined with chemo in treatments down the road. It might also have other effects on future treatments that we don't know about yet. So she thinks watching and waiting is still prefered for patients without symptoms. Interesting.
Dr. Winter is also featured in a second video that describes an upcoming clinical trial, one that I bit my tongue about in talking with Dr. R last week. The trial will use Bendamustine (Treanda), Bortizimab (Velcade), and Rituxan, comparing them to Bendamustine and Rituxan without the Velcade. As she says, this should be a very interesting trial, given the success that the three treatments have shown separately. Velcade is a very interesting treatment (it shuts off the mechanism that tells cancer cells to remove waste products, causing them to essentially kill themselves); it's recognized as the first generation of its type of treatment, with some improved versions already in development. I find this combination especially interesting because Bendamutine and Velcade have been two options that Dr. R had brought up recently as possibilities for me (with Bendamustine his current choice).
I've linked to Patient Power videos before -- they're a great organization. But I want to point out that the two videos linked here are co-produced by Patients Against Lymphoma, a patient advocacy group that has been an enormous help to me in the past in many ways. Their site is the first place a newly-diagnosed lymphoma patient should visit, in my humble opinion.
Speaking of humble -- I also want to make clear that I have great respect for Dr R, and I think he enjoys seeing me because I keep him on his toes. We have a kind of Larry Bird/Magic Johnson thing going.
(By the way, in that scenario, I'm Larry Bird...)
So I'll show off to you instead.
About three weeks ago, Patient Power and Patients Against Lymphoma put out a couple of videos featuring Dr. Jane Winter of Northwestern University. Both deal with issues that I thought about bringing up to Dr. R, but bit my tongue instead.
The first deals with the Rituxan vs. Watch and Wait issue that I mentioned in the last post (and which I had talked about a few weeks ago, while the ASH conference was going on). The ASH presentation showed evidence that treating with Rituxan immediately, rather than watching and waiting, results in improvements in the time needed before the next treatment. Dr. Winter has an interesting take on this study, and calls its conclusions (though not its results) into question: she thinks too much Rituxan too early might lower its effectiveness when combined with chemo in treatments down the road. It might also have other effects on future treatments that we don't know about yet. So she thinks watching and waiting is still prefered for patients without symptoms. Interesting.
Dr. Winter is also featured in a second video that describes an upcoming clinical trial, one that I bit my tongue about in talking with Dr. R last week. The trial will use Bendamustine (Treanda), Bortizimab (Velcade), and Rituxan, comparing them to Bendamustine and Rituxan without the Velcade. As she says, this should be a very interesting trial, given the success that the three treatments have shown separately. Velcade is a very interesting treatment (it shuts off the mechanism that tells cancer cells to remove waste products, causing them to essentially kill themselves); it's recognized as the first generation of its type of treatment, with some improved versions already in development. I find this combination especially interesting because Bendamutine and Velcade have been two options that Dr. R had brought up recently as possibilities for me (with Bendamustine his current choice).
I've linked to Patient Power videos before -- they're a great organization. But I want to point out that the two videos linked here are co-produced by Patients Against Lymphoma, a patient advocacy group that has been an enormous help to me in the past in many ways. Their site is the first place a newly-diagnosed lymphoma patient should visit, in my humble opinion.
Speaking of humble -- I also want to make clear that I have great respect for Dr R, and I think he enjoys seeing me because I keep him on his toes. We have a kind of Larry Bird/Magic Johnson thing going.
(By the way, in that scenario, I'm Larry Bird...)
Friday, January 7, 2011
All Is Well
Visit with Dr. R this morning. No surprises, no problems.
It was the usual routine: a physical exam, some bloodwork, and a discussion about how I'm feeling. Everything looks fine on all counts.
A few highlights of the visit:
It was the usual routine: a physical exam, some bloodwork, and a discussion about how I'm feeling. Everything looks fine on all counts.
A few highlights of the visit:
- Dr. R told me that he uses me as a "poster child" for other patients who are nervous about watching and waiting. He said that he doesn't use my name, of course. I told him he was welcome to use my name if he wanted to -- and that I'd be happy to talk to anyone about watching and waiting, or anything else related to Follicular NHL. He probably won't, but I was serious. At the very least, maybe he'll let them know that it takes a good 6 months to get used to the idea of watching and waiting.
- He said he was going to "pre-empt my question" and talk about treatment possibilities before I got a chance to ask first. I was mildly, jokingly insulted, and told him I hadn't planned on bringing up treatment options at all. He said he would probably go with Bendamustine (aka Treanda) if and when I needed treatment. In his opinion, the field seemed to be narrowing as far as preferred treatment choices, and Bendamustine seems to be the choice (it's as effective, if not more so, than CHOP, with with less toxicity). He talked about it like he thought I'd never heard of it, and since he was being "pre-emptive" and feeling smart, I asked a question about dosing schedules: Same as Rituxan, once a week? He said he wasn't sure; they'd used Bendamustine in the office with other types of NHL, but not yet with Follicular, but he thought it was the same schedule of once per week. (I behaved myself and let him feel smart, and didn't point out that it's a 21 day cycle, given on days 1 and 2. I also didn't point out the national clinical trial about to start that combines Bendamustine with Velcade. Furthermore, I didn't bring up the whole ASH presentation from last month that provided evidence that watching and waiting should be replaced with immediate treatment with Rituxan. My thoughts are obnoxious, but I can play nice when I have to....)
- He thinks things look good enough to hold off for 4 months until I see him again (though, of course, I'm welcome to see him sooner if there are problems). He actually thought the nodes in my lower abdomen seemed a little smaller than last time he felt me up. He also mentioned that it's coming up on a year since my last scan (early March), and he was considering ordering one in a couple of months, to keep them on a once per year schedule. But then he thought maybe we wouldn't bother, if there doesn't seem to be a need for one (that is, if there's nothing new to check out). I'm OK with that logic, though I do like to have some confirmation that everything is as good as I think it is. We'll see what May brings.
So everything seems good. I'll keep doing what I've been doing, I guess, since it seems to be working -- running, blogging, and being handsome.
Thursday, January 6, 2011
More Hope
I'm going to continue my Parade of Hope for 2011 and share this brief post from Chester, a member of my online support group. He titled the post "Well I Dodged the Bullet":
"I had a full body scan and compared to the one I had 5 months ago, everything is stable, if not a little better. Big relief because when I saw the doctor back then, he said he would put me on 2 year rituxan maintenance at the start of the new year. That’s what I expected to hear today, but instead, since nothing has changed, he said watch and wait. I will see him again in 4 months. Is there anything more frighten than sitting in the doctors office, waiting for him to come in and tell the scan results. I’ve been fighting NHL for close to 25 years and it does not get any easier. Happy healthy New Year my friends."
25 years! I love posts like this. And while it sucks that, even after all that time, there's still that bit of fear after a scan, and there's all the anxiety that comes from watching and waiting...25 years! How can you not love seeing something like that?
************************
I see Dr. R tomorrow for a regular check-up. I had originally had this appointment scheduled for about 3 or 4 weeks ago, but it conflicted with a final exam, so tomorrow's the day.
I don't anticipate any problems. I'll try to post something in the afternoon, or early Saturday.
Wish me luck.
"I had a full body scan and compared to the one I had 5 months ago, everything is stable, if not a little better. Big relief because when I saw the doctor back then, he said he would put me on 2 year rituxan maintenance at the start of the new year. That’s what I expected to hear today, but instead, since nothing has changed, he said watch and wait. I will see him again in 4 months. Is there anything more frighten than sitting in the doctors office, waiting for him to come in and tell the scan results. I’ve been fighting NHL for close to 25 years and it does not get any easier. Happy healthy New Year my friends."
25 years! I love posts like this. And while it sucks that, even after all that time, there's still that bit of fear after a scan, and there's all the anxiety that comes from watching and waiting...25 years! How can you not love seeing something like that?
************************
I see Dr. R tomorrow for a regular check-up. I had originally had this appointment scheduled for about 3 or 4 weeks ago, but it conflicted with a final exam, so tomorrow's the day.
I don't anticipate any problems. I'll try to post something in the afternoon, or early Saturday.
Wish me luck.
Tuesday, January 4, 2011
Cancer Blood Test
As this linked article indicates, there is much excitement in the cancer community about a (fairly) new blood test that can detect cancer cells in a patient's blood. It's been around for a couple of years, but it recently got the backing of Johnson and Johnson, which will give it a pretty long reach, and an agreement to be tested out at Dana Farber, Mass. General, Sloan-Kettering, and MD Anderson (which is a pretty kick-ass group of four cancer hospitals). So there is a lot of promise and hope here (though, for me, some lingering skepticism....).
The test is sensitive enough to detect a single cancer cell among one billion cells in a sample of blood. The purpose, it seems, is not to find out if someone has cancer, but rather to determine if a cancer patient's tumor has begun to spread, by way of the bloodstream. The article has a description of how the test works; the blood sample is spread across a chip that is coated with antibodies; any cancer cells attach to the antibodies, where they can be counted. Very cool concept, and one of the success stories related to the Stand Up 2 Cancer program that has tried to encourage innovative, interdisciplinary approaches to solving cancer-related problems (the four hospitals above will be testing the test as part of a SU2C grant).
The blood test could also be used for patients who are undergoing treatment. Instead of a radiation-heavy scan, or an invasive biopsy, this blood test can give doctors some sense of how well a treatment is working. This is actually being done already, allowing doctors to see if the number of cancer cells in the blood is being reduced.
The article says that the blood test holds promise for certain cancers (breast, prostate, colon, and lung), but makes no mention of lymphoma. I'm not sure how this would work for "liquid" cancers like lymphoma or leukemia, though I could see that the use of antibodies, so common now in lymphoma treatments, could complicate things in some way. Not sure -- something to throw out to the support group, maybe.
I'm still a little skeptical, though. I guess it immediately had me thinking about the "full body scans" that became popular a few years ago, where people would pay for a CT scan that would reveal anything "abnormal." That had all kinds of problems -- unnecessary radiation, false positives, not to mention high costs. Maybe it's the potential false positives that bother me about the test -- I wouldn't want this simple to test to be used for purposes that are much broader than what is described here, like having some company promise that it could detect cancer early. That could potentially lead to lots of unnecessary worries and unnecessary biospies and scans for otherwise healthy people. But I suppose the tests have to look for particular types of cancer, given that they use antibodies as detection devices, so it would be pretty hard to test for every kind of cancer. At least for now.
So enough of that negativity. 2011 is the year of hope, right? We're just going to assume that this will work, and will be used for the right reasons, and we'll be hopeful that it will be expanded for use on lymphoma patients very soon.
The test is sensitive enough to detect a single cancer cell among one billion cells in a sample of blood. The purpose, it seems, is not to find out if someone has cancer, but rather to determine if a cancer patient's tumor has begun to spread, by way of the bloodstream. The article has a description of how the test works; the blood sample is spread across a chip that is coated with antibodies; any cancer cells attach to the antibodies, where they can be counted. Very cool concept, and one of the success stories related to the Stand Up 2 Cancer program that has tried to encourage innovative, interdisciplinary approaches to solving cancer-related problems (the four hospitals above will be testing the test as part of a SU2C grant).
The blood test could also be used for patients who are undergoing treatment. Instead of a radiation-heavy scan, or an invasive biopsy, this blood test can give doctors some sense of how well a treatment is working. This is actually being done already, allowing doctors to see if the number of cancer cells in the blood is being reduced.
The article says that the blood test holds promise for certain cancers (breast, prostate, colon, and lung), but makes no mention of lymphoma. I'm not sure how this would work for "liquid" cancers like lymphoma or leukemia, though I could see that the use of antibodies, so common now in lymphoma treatments, could complicate things in some way. Not sure -- something to throw out to the support group, maybe.
I'm still a little skeptical, though. I guess it immediately had me thinking about the "full body scans" that became popular a few years ago, where people would pay for a CT scan that would reveal anything "abnormal." That had all kinds of problems -- unnecessary radiation, false positives, not to mention high costs. Maybe it's the potential false positives that bother me about the test -- I wouldn't want this simple to test to be used for purposes that are much broader than what is described here, like having some company promise that it could detect cancer early. That could potentially lead to lots of unnecessary worries and unnecessary biospies and scans for otherwise healthy people. But I suppose the tests have to look for particular types of cancer, given that they use antibodies as detection devices, so it would be pretty hard to test for every kind of cancer. At least for now.
So enough of that negativity. 2011 is the year of hope, right? We're just going to assume that this will work, and will be used for the right reasons, and we'll be hopeful that it will be expanded for use on lymphoma patients very soon.
Monday, January 3, 2011
New Year, New Research
Happy New Year to all.
Thought I'd start off the new year with some really good NHL news: research about an improved use of antibodies -- potential for a cure that relies only on antibodies. The abstract for the full article, "Anti-CD47 antibody synergizes with rituximab to promote phagocytosis and eradicate non-Hodgkin lymphoma," comes from Stanford University, and is available here.
Lympho Bob readers no doubt know that many types of NHL have a protein on their surfaces called CD20; it is this protein that is targeted by Rituxan. Rituxan does a nice job of pushing back follicualr NHL, but does not cure it. However, when combined with some chemotherapies, Rituxan increases the chemo's effectiveness. And when used on its own, it fights things off with minimal side effects (as I know firsthand).
What the Stanford researchers have found is that another protein, CD47, can be present as well, and that when it is present, it usually means bad news. But they have found that combining an anti-CD47 antibody with the anti-CD20 antibody (Rituxan) results in phagocytosis -- the cancer cells being wiped out by the body's natural defenses. This led not just to a temporary state of remission, but, they claim, a full cure.
So far, this is in VERY early stages -- the human NHL cells were placed into mice, and then tested. So there's a long way to go before this gets tried out on actual people with their own NHL cells, and I suspect it may not be as effective as it seems at first.
But then again, I could be wrong -- maybe this is the start of something very, very wonderful -- a very effective treatment with minimal toxicity.
So we'll start the new year off with that hopeful thought.
Thought I'd start off the new year with some really good NHL news: research about an improved use of antibodies -- potential for a cure that relies only on antibodies. The abstract for the full article, "Anti-CD47 antibody synergizes with rituximab to promote phagocytosis and eradicate non-Hodgkin lymphoma," comes from Stanford University, and is available here.
Lympho Bob readers no doubt know that many types of NHL have a protein on their surfaces called CD20; it is this protein that is targeted by Rituxan. Rituxan does a nice job of pushing back follicualr NHL, but does not cure it. However, when combined with some chemotherapies, Rituxan increases the chemo's effectiveness. And when used on its own, it fights things off with minimal side effects (as I know firsthand).
What the Stanford researchers have found is that another protein, CD47, can be present as well, and that when it is present, it usually means bad news. But they have found that combining an anti-CD47 antibody with the anti-CD20 antibody (Rituxan) results in phagocytosis -- the cancer cells being wiped out by the body's natural defenses. This led not just to a temporary state of remission, but, they claim, a full cure.
So far, this is in VERY early stages -- the human NHL cells were placed into mice, and then tested. So there's a long way to go before this gets tried out on actual people with their own NHL cells, and I suspect it may not be as effective as it seems at first.
But then again, I could be wrong -- maybe this is the start of something very, very wonderful -- a very effective treatment with minimal toxicity.
So we'll start the new year off with that hopeful thought.
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