Well, it's time to say Goodbye to Lymphoma Awareness Month. I thought we'd close it out with a focus on Follicular Lymphoma.
Literally. The Lymphoma Research Foundation website published "Focus on Follicular Lymphoma" featuring an interview with Dr. Stephanie Gregory from Rush university Medical Center.
There's nothing earth-shattering in the interview; she's asked questions about diagnosis, current treatments, future treatments, that kind of this. It's a nice summary of the state of things for fNHL.
And I guess that's as good a way to end Lymphoma Awareness Month as any. Take stock of where we are, and think about where we're going.
As for me? I'm too busy for too much reflection right now. And that's a good thing. Work is good. The family is happy. My health is relatively good. I'm ready for the future.
Sunday, September 30, 2012
Friday, September 28, 2012
Wednesday, September 26, 2012
Watching and Waiting in the News
The Journal of Clinical Oncology's latest edition includes an article on the effectiveness of Watching and Waiting as an initial treatment strategy for low-tumor burden Follicular Lymphoma.
(I can't get the link to the article to work, so here's a link to a piece from Doctor's Lounge that reports on the JCO article.)
Basically, the article says that Follicular patients that don't have symptoms, and have more than 4 node clusters affected, are more likely to need treatment sooner than those with fewer affected nodes. The study compared people who watched and waited to those who had treatment right away with Rituxan or Rituxan plus something else. The researcher looked at FFTF rate -- Freedom from Treatment Failure -- how long it took for their initial treatment to stop working. In the study, 79% of Watch-and-Waiters went four-years before Treatment Failure, while 69% of the Rituxan group went four years.
So, more evidence that Watching and Waiting is OK.
Which, frankly, is fine with me. I don't need to know that W&W is better than being treated right away. I've been there already. But I do like hearing (yet again) that it's a valid option. For the right person, W&W can be a good thing.
For the right person. That's key. In the same issue of the JCO, Lymphoma Rock Star Dr. Bruce Cheson writes an editorial called "Waiting is the Hardest Part" (for some reason, I am able to link to this JCO article). Dr. Cheson takes a clinician's view of W&W, pointing out "One of the more challenging conversations to have with a patient is one presenting a new diagnosis of an indolent and treatable type of cancer that is incurable but for which the plan is not to offer treatment but merely follow-up with the patient every few months to see what happens." Challenging because, for some people, W&W is a relief -- we can hold off treatment for a while. For others, it's a burden -- emotional, psychological, spiritual, just waiting for "the crescent blade in Edgar Allen Poe’s 'The Pit and the Pendulum' ... swinging overhead with its ominous descent 'inch by inch, line by line, ... at intervals that seemed like ages'."
(A Poe reference in a medical journal. That's why he's a rock star.)
It's an apt reference, though, as we watch and wait for the bad thing to come, that will be our doom. In the end, says Cheson, watching and waiting is not "intellectually satisfying." I assume he means for the doctor. Once we all get over the emotional part of things, and look at the situation rationally, then W&W makes sense. But "rationally satisfying" isn't "intellectually satisfying." What we need, if we really want to get rid of W&W, is a better option -- one that comes with minimal side effects, and the promise of a cure.
And, as he points out, we are moving in that direction. Combing Rituxan with other "biologic agents" (other variations of monoclonal antibodies that target different surface proteins than Rituxan targets) are showing some good results. So are the various kinase inhibitors that are being developed.
So why choose Watch and Wait? The main reason, says Cheson, is "optimism." The belief that what might come will be better than what we have now, and holding off treatment will mean more options later.
I like that. Even more than I like the Poe reference.
(I can't get the link to the article to work, so here's a link to a piece from Doctor's Lounge that reports on the JCO article.)
Basically, the article says that Follicular patients that don't have symptoms, and have more than 4 node clusters affected, are more likely to need treatment sooner than those with fewer affected nodes. The study compared people who watched and waited to those who had treatment right away with Rituxan or Rituxan plus something else. The researcher looked at FFTF rate -- Freedom from Treatment Failure -- how long it took for their initial treatment to stop working. In the study, 79% of Watch-and-Waiters went four-years before Treatment Failure, while 69% of the Rituxan group went four years.
So, more evidence that Watching and Waiting is OK.
Which, frankly, is fine with me. I don't need to know that W&W is better than being treated right away. I've been there already. But I do like hearing (yet again) that it's a valid option. For the right person, W&W can be a good thing.
For the right person. That's key. In the same issue of the JCO, Lymphoma Rock Star Dr. Bruce Cheson writes an editorial called "Waiting is the Hardest Part" (for some reason, I am able to link to this JCO article). Dr. Cheson takes a clinician's view of W&W, pointing out "One of the more challenging conversations to have with a patient is one presenting a new diagnosis of an indolent and treatable type of cancer that is incurable but for which the plan is not to offer treatment but merely follow-up with the patient every few months to see what happens." Challenging because, for some people, W&W is a relief -- we can hold off treatment for a while. For others, it's a burden -- emotional, psychological, spiritual, just waiting for "the crescent blade in Edgar Allen Poe’s 'The Pit and the Pendulum' ... swinging overhead with its ominous descent 'inch by inch, line by line, ... at intervals that seemed like ages'."
(A Poe reference in a medical journal. That's why he's a rock star.)
It's an apt reference, though, as we watch and wait for the bad thing to come, that will be our doom. In the end, says Cheson, watching and waiting is not "intellectually satisfying." I assume he means for the doctor. Once we all get over the emotional part of things, and look at the situation rationally, then W&W makes sense. But "rationally satisfying" isn't "intellectually satisfying." What we need, if we really want to get rid of W&W, is a better option -- one that comes with minimal side effects, and the promise of a cure.
And, as he points out, we are moving in that direction. Combing Rituxan with other "biologic agents" (other variations of monoclonal antibodies that target different surface proteins than Rituxan targets) are showing some good results. So are the various kinase inhibitors that are being developed.
So why choose Watch and Wait? The main reason, says Cheson, is "optimism." The belief that what might come will be better than what we have now, and holding off treatment will mean more options later.
I like that. Even more than I like the Poe reference.
Monday, September 24, 2012
Marijuana and Cancer
Medical marijuana has been available for a while now, and it is known to relieve symptoms associated with some diseases and with certain treatments. But now some researchers are showing that compounds in marijuana might actually stop cancer cells from growing.
Two researchers at California Pacific Medical Center, after 20 years of research, found that the compound called Cannabidiol affects a gene called ID-1, present in certain aggressive cancers. The Cannabidiol stops cancer cells from growing, and stops the tumor from creating new blood vessels to feed it. The early research has shown success with a number of aggressive cancers -- breast, prostate, and brain.
The compound has already been used with other, non-cancerous diseases; it relieves nausea and anxiety, for example. And all indications are that it is non-toxic, so side effects should be minimal.
The researchers are hoping to start clinical trials very soon. That means it could be some time before anything comes of this, but it certainly appears promising.
It's easy to joke about this ("Researching for 20 years? Wonder why that marijuana research went soooooo slooooowly?") But it really does seem promising. There's actually a pretty long line of research into marijuana as a direct treatment for cancer, rather than just a way to manage symptoms (the Daily Beast offers a quick review as they describe this current research). It's controversial, naturally, and there are plenty of people who would rather not encourage marijuana use for any reason.
But I say, explore away. Anything that might help fight cancer is fine with me.
(You were probably expecting another marijuana joke, huh?)
Two researchers at California Pacific Medical Center, after 20 years of research, found that the compound called Cannabidiol affects a gene called ID-1, present in certain aggressive cancers. The Cannabidiol stops cancer cells from growing, and stops the tumor from creating new blood vessels to feed it. The early research has shown success with a number of aggressive cancers -- breast, prostate, and brain.
The compound has already been used with other, non-cancerous diseases; it relieves nausea and anxiety, for example. And all indications are that it is non-toxic, so side effects should be minimal.
The researchers are hoping to start clinical trials very soon. That means it could be some time before anything comes of this, but it certainly appears promising.
It's easy to joke about this ("Researching for 20 years? Wonder why that marijuana research went soooooo slooooowly?") But it really does seem promising. There's actually a pretty long line of research into marijuana as a direct treatment for cancer, rather than just a way to manage symptoms (the Daily Beast offers a quick review as they describe this current research). It's controversial, naturally, and there are plenty of people who would rather not encourage marijuana use for any reason.
But I say, explore away. Anything that might help fight cancer is fine with me.
(You were probably expecting another marijuana joke, huh?)
Saturday, September 22, 2012
Anthems
This morning, I was sitting on the couch, avoiding work, when I heard the faint notes of a saxophone -- my son, in his room, rehearsing some pieces for an audition next month. He was playing "Is You Is or Is You Ain't," which might be part of the audition. Or it could just be a piece that he was messing around with from a book of jazz standards he likes to mess around from. He was probably avoiding work, like I was doing.
I'm sitting here now thinking about the strange history I have with "Is You Is." I first heard it when I was a kid, when Tom Cat sang it to woo someone in a Tom and Jerry cartoon. Then I heard it again, a few years later, when I was in Italy, when a friend made a mix tape with dedications to a bunch of us. I don't even remember what song she dedicated to me, but the song I kept playing on the tape was Joe Jackson's version of "Is You Is," dedicated instead to my friend John, The Guy Who Always Wore Motorcycle Boots and a Mechanic's Shirt with Someone Else's Name Stitched On It. And then, after Isabel and I were married, another friend sent us a Louis Jordan tape -- with "Nobody Here But Us Chickens," "Five Guys Named Moe," and "Is You Is," among others.
I love that there's a song that keeps coming back to me, from so many different parts of my life. There are others, of course. But this one is nice because it's kind of random; it's not like I was a big Louis Jordan fan when I was a kid or anything.
Moments like this remind me that Isabel and I always said we wanted a house full of music. When the kids were small and the weather got colder, we used to play music for them after dinner. Their introduction to the Beatles, Bob Marley, James Taylor, Buckwheat Zydeco, some occasional Bruce Cockburn or Smiths.
I think a lot about the role music has played in my life; it's hard not to do when you have kids that are musicians. And ironic, since I'm such a crappy musician myself. But I love to listen, and I've been known to belt one out on occasion. Thinking about all this made me think about a column from Mary Elizabeth Williams from a few weeks ago. It didn't take too long for me to find it. She writes about something similar -- how music has been an influence in her own life, especially after she was diagnosed with cancer, and how the experience changed the meanings of the songs she has loved.
Williams says, "We apply our most magical thinking to our favorite songs, playing them in endless loops and singing along as if in prayer." I agree wholeheartedly. (She's such a good writer....) I've mentioned before that music has been almost a part of my emotional therapy through all of this. I can latch on to a song and play it over and over again, part of that magical thinking, almost a prayer. Sometimes, it's to find some message, to make sense of what's going on with me. I wrote on my 4 year cancerversary about how some songs helped me sort through some of my mental struggles, trying to answer the question, If cancer changes me, who am I supposed to be? I'm not sure I've ever answered that question fully, but the music certainly made the process more pleasant.
Williams says we all need an anthem -- an inspirational song, maybe a whole list of them, to help us through struggles. I've had plenty of those, too, and I've worn out my iPod listening to them. Dropkick Murphys, "Shipping Up to Boston." The Hours, "Ali in the Jungle." Jack's Mannequin, "Swim." All good running songs, too.
My anthems help me visualize bad things turning into good things. The story that I tell myself changes occasionally, but in the end, I always feel better. Bad into good.
"Is You Is or Is You Ain't" doesn't really fit this "anthem" category, though in some ways it's the perfect anthem for the watching-and-waiting, cancer-that-can't-decide-what-it's-doing, always-kind-of-in-the-middle Follicular Lymphoma patient.
It's quiet upstairs now. He's stopped playing sax, and already been on Facebook to complain about his geometry homework, and I've listened to my cancer anthems, since I had to find the links to their videos. We went apple picking earlier on this beautiful fall New England day. It's a good day. A happy day. Not just because there's music, and Macoun apples, and fall in the air and a dog at my feet. There's relatively good health, too.
And there's a daughter asking what's for dinner, and begging to watch the movie version of the play that the kids will be putting on at school this spring.
The movie? The Sound of Music.
(As my friend Sarah says: Truth.)
I'm sitting here now thinking about the strange history I have with "Is You Is." I first heard it when I was a kid, when Tom Cat sang it to woo someone in a Tom and Jerry cartoon. Then I heard it again, a few years later, when I was in Italy, when a friend made a mix tape with dedications to a bunch of us. I don't even remember what song she dedicated to me, but the song I kept playing on the tape was Joe Jackson's version of "Is You Is," dedicated instead to my friend John, The Guy Who Always Wore Motorcycle Boots and a Mechanic's Shirt with Someone Else's Name Stitched On It. And then, after Isabel and I were married, another friend sent us a Louis Jordan tape -- with "Nobody Here But Us Chickens," "Five Guys Named Moe," and "Is You Is," among others.
I love that there's a song that keeps coming back to me, from so many different parts of my life. There are others, of course. But this one is nice because it's kind of random; it's not like I was a big Louis Jordan fan when I was a kid or anything.
Moments like this remind me that Isabel and I always said we wanted a house full of music. When the kids were small and the weather got colder, we used to play music for them after dinner. Their introduction to the Beatles, Bob Marley, James Taylor, Buckwheat Zydeco, some occasional Bruce Cockburn or Smiths.
I think a lot about the role music has played in my life; it's hard not to do when you have kids that are musicians. And ironic, since I'm such a crappy musician myself. But I love to listen, and I've been known to belt one out on occasion. Thinking about all this made me think about a column from Mary Elizabeth Williams from a few weeks ago. It didn't take too long for me to find it. She writes about something similar -- how music has been an influence in her own life, especially after she was diagnosed with cancer, and how the experience changed the meanings of the songs she has loved.
Williams says, "We apply our most magical thinking to our favorite songs, playing them in endless loops and singing along as if in prayer." I agree wholeheartedly. (She's such a good writer....) I've mentioned before that music has been almost a part of my emotional therapy through all of this. I can latch on to a song and play it over and over again, part of that magical thinking, almost a prayer. Sometimes, it's to find some message, to make sense of what's going on with me. I wrote on my 4 year cancerversary about how some songs helped me sort through some of my mental struggles, trying to answer the question, If cancer changes me, who am I supposed to be? I'm not sure I've ever answered that question fully, but the music certainly made the process more pleasant.
Williams says we all need an anthem -- an inspirational song, maybe a whole list of them, to help us through struggles. I've had plenty of those, too, and I've worn out my iPod listening to them. Dropkick Murphys, "Shipping Up to Boston." The Hours, "Ali in the Jungle." Jack's Mannequin, "Swim." All good running songs, too.
My anthems help me visualize bad things turning into good things. The story that I tell myself changes occasionally, but in the end, I always feel better. Bad into good.
"Is You Is or Is You Ain't" doesn't really fit this "anthem" category, though in some ways it's the perfect anthem for the watching-and-waiting, cancer-that-can't-decide-what-it's-doing, always-kind-of-in-the-middle Follicular Lymphoma patient.
It's quiet upstairs now. He's stopped playing sax, and already been on Facebook to complain about his geometry homework, and I've listened to my cancer anthems, since I had to find the links to their videos. We went apple picking earlier on this beautiful fall New England day. It's a good day. A happy day. Not just because there's music, and Macoun apples, and fall in the air and a dog at my feet. There's relatively good health, too.
And there's a daughter asking what's for dinner, and begging to watch the movie version of the play that the kids will be putting on at school this spring.
The movie? The Sound of Music.
(As my friend Sarah says: Truth.)
Thursday, September 20, 2012
Lymphoma Survey
The Lymphoma Coalition, an umbrella organization for a whole bunch of lymphoma research, support. and awareness organizations from around the world, just published the results of their 2012 survey of lymphoma patients.
The survey was taken by 1606 people from 51 countries, and the LC found three broad themes:
1) There is a general lack of understanding and awareness of the signs and symptoms of lymphoma. It's complex, and easily confused with other benign things, so both patients and doctors can misdiagnose, leading to a late diagnosis, and the complications that come with it.
2) There is a lot of misunderstanding about clinical trials -- how they work, who should be interested in them, how they benefit all patients, and why they should be considered an effective option.
3) Quality of life for lymphoma patients isn't nearly as good as it could be.
Interestingly, when the LC did their last survey in 2010, #1 and #2 were also on their list of trends. It's a shame that not much has changed in 2 years.
The full results of their survey are available at the link, with breakdown by country also available. The United States results are 192 pages long, but don't let that intimidate you. There's lots of interesting information about the topics above, and other topics. If you didn't take the survey (I didn't), it's interesting to see how your own responses compare with others in the U.S. and around the world.
Awareness is key. The LC keeps telling us that....
The survey was taken by 1606 people from 51 countries, and the LC found three broad themes:
1) There is a general lack of understanding and awareness of the signs and symptoms of lymphoma. It's complex, and easily confused with other benign things, so both patients and doctors can misdiagnose, leading to a late diagnosis, and the complications that come with it.
2) There is a lot of misunderstanding about clinical trials -- how they work, who should be interested in them, how they benefit all patients, and why they should be considered an effective option.
3) Quality of life for lymphoma patients isn't nearly as good as it could be.
Interestingly, when the LC did their last survey in 2010, #1 and #2 were also on their list of trends. It's a shame that not much has changed in 2 years.
The full results of their survey are available at the link, with breakdown by country also available. The United States results are 192 pages long, but don't let that intimidate you. There's lots of interesting information about the topics above, and other topics. If you didn't take the survey (I didn't), it's interesting to see how your own responses compare with others in the U.S. and around the world.
Awareness is key. The LC keeps telling us that....
Tuesday, September 18, 2012
Lester and Andruzzi
It's still Lymphoma/Blood Cancer Awareness Month, and there's still lots going on to celebrate.
Two Boston sports heroes -- both Lymphoma Survivors, both Nodes of Gold honorees -- are using their fame to help cancer patients.
Jon Lester, Red Sox pitcher, is hosting a fundraiser for his NRVQT (Never Quit) Foundation. The money raised will benefit the Pediatric Cancer Research Foundation.
Joe Andruzzi, former Patriots lineman and Burkett's Lymphoma survivor, is raising money for cancer research through his (Up)Beat Cancer Foundation. Andruzzi believes strongly in positive attitudes and laughter in beating cancer. The statement of beliefs on the (Up)Beat website is kind of cool:
I like it. Upbeat isn't always possible (we're allowed a bad day every now and then), but as an overall approach to facing cancer, I'm all for it.
(And goodness knows Sox and Pats fans could use a little upbeat laughter these days....)
Two Boston sports heroes -- both Lymphoma Survivors, both Nodes of Gold honorees -- are using their fame to help cancer patients.
Jon Lester, Red Sox pitcher, is hosting a fundraiser for his NRVQT (Never Quit) Foundation. The money raised will benefit the Pediatric Cancer Research Foundation.
Joe Andruzzi, former Patriots lineman and Burkett's Lymphoma survivor, is raising money for cancer research through his (Up)Beat Cancer Foundation. Andruzzi believes strongly in positive attitudes and laughter in beating cancer. The statement of beliefs on the (Up)Beat website is kind of cool:
We believe in electric guitar, not sad piano.
We believe in silly snapshots, not moody black and whites.
We believe in deep laughs, not long faces.
We believe in exciting futures, not uncertain presents.
We believe in carefree jokes, not heavy hearts.
We believe in cutting loose, not reining in.
We believe in what can be, not what can’t.
I like it. Upbeat isn't always possible (we're allowed a bad day every now and then), but as an overall approach to facing cancer, I'm all for it.
(And goodness knows Sox and Pats fans could use a little upbeat laughter these days....)
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