I want to share something that was posted by a member of the online support group. His name is Dave, and he has a website called NHL: Playing in the Wrong League. (He's Canadian, and a hockey fan, and really likes that whole NHL/National Hockey League/Non-Hodgkin's Lymphoma pun.) It's a nice website; I visited soon after my diagnosis for some hope.
Dave was diagnosed with Follicular NHL in 1989. He called his post to the support group, copied below, "Christmas Inspiration from 20 year NHL survivor," but I think it's a great way to end the year.
Enjoy.
*******************************
I was saving this post for my birthday in January but it seems we all need a little picker upper at this spiritual time of year. You get one from reading about my NHL Story and I get one from sending out the message. I saved this post from a decade ago:
HOPE & LONG TERM GOALS
Wednesday, 19-Jan-2000 10:45:05
Today is my 40th birthday. I've reached my final long term goal that I set when I was diagnosed in 1989 with NHL. When I entered my first battle I was told I had a non curable disease that was predominately an older person hardship, and if I was 65 or 70 then it wouldn't have been so bad but being 30 it was like getting a life sentence (and according to the stats more like getting the death penalty) for something I think I didn't do (as in the condemned innocent prisoner, or if I did, it definitely wasn't done intentionally - what brought on my cancer). The stats I could find back then (1990) weren't too optimistic, so being a realist I set short term goals (immediate remission and I mean right now), middle term goals (new job) and long term goals (see the millennium and turn 40), based on the information I was finding. Along the way I adapted and set new short term goals but was reluctant to add new long term goals. I really didn't feel like I had a future because of the nature of the Recurrent NHL Handle (keeps on coming back) and the continuous adventures and misfortunes that dealing with a life threatening disease brings. Today I need to set new long term goals. I'm currently in a remission of 3 years (Peripheral Stem Cell Transplant Feb.18th, 1997 - my more emotional re-birthday - and my longest remission ever) and I'm more optimistic to a future even if it still is a somewhat cloudy picture. Back in 1990 there was little hope to be found, only my determined will to go ten rounds with the big guy if need be - I'm currently in between the third and fourth rounds and I fear the ringing of the bell and would be a fool not to. Technology is progressing so fast and my flame of hope grows brighter each day as new means of treating the disease are tested and approved and the news of more and more success stories find my ears.
Where do I go from here? Well the experience and wisdom of dealing with NHL for over a decade has opened my eyes to the priorities of life, or a sixth sense of understanding as I call it or a greater appreciation of the other 5. Life is a series of up and downs, peaks and valleys, and recently I'm going through another period of my life where I should be down in the valley in deep depression - recently lost my dad to prostate cancer, lost my girlfriend to a new job, and may lose my own job to restructuring. But having NHL has taught me to deal with the pain with a short term attitude, rather than a long term manner and to move on quickly, because life is too rich to waste. It's this same philosophy I will use in determining one of my new long term goals. Being in the best shape in decades (back to high school weight and energy) is also part of this philosophy of not wasting life, partaking and enjoying while you can. Those of you familiar with my Web Page "NHL Playing in the Wrong League” may recall my comparing living with NHL to a modern day gunslinger, living for today because there may not be a tomorrow. This will play a big part of my new long term goal of reaching 50. I will enjoy life to the fullest while I still can and promise to myself and the ultimate being, that I will continue to do good on this earth, by sharing my knowledge and experience. They say life begins at 40 well in my case I know it has!
Believe & Take Care
In January I will turn 50 years old and reach another long term goal. Most people are apprehensive in turning 50 because it is a marking for middle age life. For me I will turn 50 with appreciation because I had a life crisis at the age of 29. Turning 50 still wows me because of the NHL journey I have taken; living though my Recurrent NHL Days of the 1990’s and being NHL free in the 2000’s, but putting up with the side effects and late effects of the previous decade’s overtreatment (Pulmonary Embolus in 2004 + 2009 and secondary cancer Malignant Melanoma 2004). In 45 years this is only the third year that I can’t play ice hockey despite having NHL for 20 of those years (1997 Stem Cell Transplant, 2004 + 2009 on blood thinners) and although I’ve told all my old-timer hockey buddies that I’m retired deep down a goal of mine is to stay not only healthy but in good physical shape until they develop a blood thinner without the bleeding threat. As one gets older it gets harder to find passions in life so I am not giving up yet and it is so important to be reaching for attainable goals to stay focused on what is important in life.
As NHL’ers we are either waiting for technology to keep us alive or while in remission hoping for technology to improve our quality of life. Today I currently walk outside 20 miles a week in the winter and run/walk outside 20 miles in the summer as a minimum and I live 4 hours north of Toronto where winters are winters (lol).Well I might as well stick with what is working and set a new long term goal of reaching the age of 60. I will continue to enjoy life to the fullest while I still can and promise to myself and the ultimate being, that I will persist in doing good on this earth, by sharing my knowledge and experience. For those of you just starting out in your NHL journey I say to you “live your life and don’t let NHL hold you back”. My main regret is not settling down and having a family when the opportunity was there. For those of you old NHL veteran farts like me I say to you “thanks for holding my hand and being part of my NHL Family” you made a big difference in my life and I will always be grateful for that. I think of you all often and also of our cohorts who didn’t make it and a smile appears on my face because we are good people!
Believe-Harness-Heal
Merry Christmas
Dave P.
Thursday, December 31, 2009
Tuesday, December 29, 2009
Post-Christmas
We're back from our Christmas travels. Thanks to the Maryland folks for a good time.
There was at least a foot of snow still sticking around when we got there, and some large patches of frozen slush in the streets. Thanks to twenty four hours of 45 degree temperatures and a steady rain, it was pretty much all gone by Saturday morning. But we had our White Christmas down South, before the Heat Miser got his way again. And we did get a little sledding in before the rain came....
The kids had a good day. Peter, especially, enjoyed his new cell phone. Within 12 hours of opening it, he has sent or received 273 text messages to various relatives. I'm not sure he's even used the "phone" part of it yet. (Based on what I hear from assorted nieces, nephews, and students, his cell phone use seems right in line with his peers'.)
We were hoping for at least a couple of days of decent sleep before New Year's Eve, but then last night we started playing with Mario and Sonic Winter Olympics on the Wii, and the next thing you know, it's 10:30, and so much for an early night.
Time sure flies when you're bobsledding with your butt on a Wii balance board....
There was at least a foot of snow still sticking around when we got there, and some large patches of frozen slush in the streets. Thanks to twenty four hours of 45 degree temperatures and a steady rain, it was pretty much all gone by Saturday morning. But we had our White Christmas down South, before the Heat Miser got his way again. And we did get a little sledding in before the rain came....
The kids had a good day. Peter, especially, enjoyed his new cell phone. Within 12 hours of opening it, he has sent or received 273 text messages to various relatives. I'm not sure he's even used the "phone" part of it yet. (Based on what I hear from assorted nieces, nephews, and students, his cell phone use seems right in line with his peers'.)
We were hoping for at least a couple of days of decent sleep before New Year's Eve, but then last night we started playing with Mario and Sonic Winter Olympics on the Wii, and the next thing you know, it's 10:30, and so much for an early night.
Time sure flies when you're bobsledding with your butt on a Wii balance board....
Monday, December 28, 2009
LRF video on Follicular NHL
As promised a few days ago, here's another link for one of the excellent videos from the Lymphoma Research Foundation, this one on the extremely relevent topic of Follicular NHL.
These videos come from the LRF's annual Forum, with presentations on basic lymphoma information for patients and their families. I usually learn a lot from these videos, and not just about the more recent research on treatments.
This video is like the others I've watched, in that it includes some basic information that I probably don't need to know, but which was new to me, and which I found fascinating.
Particularly in the early parts of the presentation, the speaker (Dr. Stephen Schuster from UPenn) talks a lot about the lymph system, lymph nodes, and how fNHL develops. I never really knew the difference between leukemias and lymphomas, though I knew both were blood cancers. Leukemias, I have learned, develop from immature lymph cells, while lymphomas develop from mature lymph cells. Fascinating. Not anything that I need to know to live my life, but it helps with the Big Picture.
I also thought it was interesting that the speaker said there is initial sensitivity to treatment in fNHL, but that the disease also frequently recurs (which is pretty basic information about fNHL). But, he says, it's up to the doctor to figure out which treatment works best for each individual patient. That, of course, is at the core of "personalized medicine." Not every treatment will work for every patient; thankfully, we have lots of options to try.
Speaking of treatments -- there's a very nice and very extensive section of the presentation on treatments, with an emphasis on some of the newer treatments being developed.
Rituxin has lots of competition, apparently; I liked his line, "There are more monoclonal antibodies than Ford has car models." It's important research, this exploration of different antibodies, given the success of Rituxin. But from what I can tell, none of them on their own seem to be any more or less effective than Riruxin. It will be interesting to see how they do in combination, or maybe as serial treatments (use Rituxin, which targets CD-20 proteins on the cancer cell, until it stops working, then try a CD-22 or CD-80 targeted antibody).
I learned something about Fludarabine, too -- that it's hard on the immune system, especially with older patients whose systems don't recover as easily. That's important to me because Dr. R (like many doctors, especially at M.D. Anderson in Texas) are big fans of the treatment. The speaker, though, is involved with some research with T cells that is relevent to Fludarabine. These researchers remove and freeze them before chemo, and then reintroduce them after chemo to re-start the immune system. (Almost sounds like a mini-mini-stem cell transplant.)That could help take away one of the big downsides of Fludarabine. He says his research suggests a series of treatments might work: Fludarabine, then T cell reintroduction, then vaccines to keep the immune system jumping.
It's another very good presentation, especially in some of the little details. A great introduction to (or refresher course in) Follicular NHL.
I may highlight a couple more of those LRF videos soon....
These videos come from the LRF's annual Forum, with presentations on basic lymphoma information for patients and their families. I usually learn a lot from these videos, and not just about the more recent research on treatments.
This video is like the others I've watched, in that it includes some basic information that I probably don't need to know, but which was new to me, and which I found fascinating.
Particularly in the early parts of the presentation, the speaker (Dr. Stephen Schuster from UPenn) talks a lot about the lymph system, lymph nodes, and how fNHL develops. I never really knew the difference between leukemias and lymphomas, though I knew both were blood cancers. Leukemias, I have learned, develop from immature lymph cells, while lymphomas develop from mature lymph cells. Fascinating. Not anything that I need to know to live my life, but it helps with the Big Picture.
I also thought it was interesting that the speaker said there is initial sensitivity to treatment in fNHL, but that the disease also frequently recurs (which is pretty basic information about fNHL). But, he says, it's up to the doctor to figure out which treatment works best for each individual patient. That, of course, is at the core of "personalized medicine." Not every treatment will work for every patient; thankfully, we have lots of options to try.
Speaking of treatments -- there's a very nice and very extensive section of the presentation on treatments, with an emphasis on some of the newer treatments being developed.
Rituxin has lots of competition, apparently; I liked his line, "There are more monoclonal antibodies than Ford has car models." It's important research, this exploration of different antibodies, given the success of Rituxin. But from what I can tell, none of them on their own seem to be any more or less effective than Riruxin. It will be interesting to see how they do in combination, or maybe as serial treatments (use Rituxin, which targets CD-20 proteins on the cancer cell, until it stops working, then try a CD-22 or CD-80 targeted antibody).
I learned something about Fludarabine, too -- that it's hard on the immune system, especially with older patients whose systems don't recover as easily. That's important to me because Dr. R (like many doctors, especially at M.D. Anderson in Texas) are big fans of the treatment. The speaker, though, is involved with some research with T cells that is relevent to Fludarabine. These researchers remove and freeze them before chemo, and then reintroduce them after chemo to re-start the immune system. (Almost sounds like a mini-mini-stem cell transplant.)That could help take away one of the big downsides of Fludarabine. He says his research suggests a series of treatments might work: Fludarabine, then T cell reintroduction, then vaccines to keep the immune system jumping.
It's another very good presentation, especially in some of the little details. A great introduction to (or refresher course in) Follicular NHL.
I may highlight a couple more of those LRF videos soon....
Friday, December 25, 2009
Merry Christmas
A very Merry Christmas to all.
Wasn't sure what kind of a message I should deliver, so I'm going to just give you some music -- clips of the boys performing in their school band Christmas concert on Monday night.
The first song is "Believe," from the movie The Polar Express. Peter is usually a saxophonist, but is playing drums on this piece (the band doesn't have a percussionist, so some of the advanced students are filling in for different songs). Listen for the nice clarinet part just after the flutes near the beginning, and watch for John -- the only one wearing a Santa hat and getting into the Christmas spirit for the concert.
Next up is "Joy to the World," a saxophone ensemble piece, with Peter on lead alto sax.
Finally, the concert finale, "Rockin' Around the Christmas Tree," with John again on clarinet, and Peter on alto sax.
Oh, and one last thing.....
My kids bring such joy to my world, and I hope they've brought a little to yours, too.
Wednesday, December 23, 2009
LRF Video on PET scans
The Lymphoma Research Foundation has posted some nice videos from their October North American Educational Forum on Lymphoma. I've linked to some of LRF's videos before; it's worth checking out their full list.
The LRF's Educational Forum is an annual event geared toward patients and their families, providing up-to-date information about lymphomas of all types in easy-to-understand language. As you can see from the videos from the Forum, the presenters do a nice job of giving the heavy science and then explaining what it all means in simpler language. (I suspect that people who would be attracted to this sort of event probably have a background or an interest in science.)
One of the recently posted videos is on PET scans. I already had an idea of how PET scans work (they pick up glucose metabolism by cells -- cancer cells will eat the sugar faster than normal cells, and the the scan will glow in places where that speed-eating is taking place). But I learned a few things from the video.
I've heard before that the measurement of the glucose metabolism is an SUV score. I have no idea what mine is, because I avoid numbers when I can -- they can be misinterpreted too easily if you're looking for a reason to be depressed. What I learned from the video is that indolent lymphomas have lower SUV scores than aggressive lymphomas, so an SUV score can be an indication of transformation to an aggressive type of lymphoma. Basic stuff, but pretty important. PETs are also able to pick up disease in nodes that are not swollen, or in organs like the spleen, liver, and bone marrow. A regular CAT scan won't necessarily show those things.
PET scans are useful, says the speaker, for initial staging for Follicular NHL, but usually are less useful for later checks on the disease's progression, since a change in staging (that is, finding out that the disease has spread to other nodes or organs) doesn't usually change the course of treatment. That is, an initial PET might show a stage III disease, like mine did -- presence of disease in nodes above and below the diaphragm. If I was found to have progressed to stage IV, say, presence in the bone marrow or spleen, my treatment would still be the same. FNHL tends to react to treatment about the same no matter what the stage. This is why Dr. R only goes with CAT scans for me these days.
A useful video, I think, for some basic, but important, information on PETs. The whole series is great in that way: fairly easy explanations of up-to-date information. I'll talk about the one of Follicular NHL in a few days.
The LRF's Educational Forum is an annual event geared toward patients and their families, providing up-to-date information about lymphomas of all types in easy-to-understand language. As you can see from the videos from the Forum, the presenters do a nice job of giving the heavy science and then explaining what it all means in simpler language. (I suspect that people who would be attracted to this sort of event probably have a background or an interest in science.)
One of the recently posted videos is on PET scans. I already had an idea of how PET scans work (they pick up glucose metabolism by cells -- cancer cells will eat the sugar faster than normal cells, and the the scan will glow in places where that speed-eating is taking place). But I learned a few things from the video.
I've heard before that the measurement of the glucose metabolism is an SUV score. I have no idea what mine is, because I avoid numbers when I can -- they can be misinterpreted too easily if you're looking for a reason to be depressed. What I learned from the video is that indolent lymphomas have lower SUV scores than aggressive lymphomas, so an SUV score can be an indication of transformation to an aggressive type of lymphoma. Basic stuff, but pretty important. PETs are also able to pick up disease in nodes that are not swollen, or in organs like the spleen, liver, and bone marrow. A regular CAT scan won't necessarily show those things.
PET scans are useful, says the speaker, for initial staging for Follicular NHL, but usually are less useful for later checks on the disease's progression, since a change in staging (that is, finding out that the disease has spread to other nodes or organs) doesn't usually change the course of treatment. That is, an initial PET might show a stage III disease, like mine did -- presence of disease in nodes above and below the diaphragm. If I was found to have progressed to stage IV, say, presence in the bone marrow or spleen, my treatment would still be the same. FNHL tends to react to treatment about the same no matter what the stage. This is why Dr. R only goes with CAT scans for me these days.
A useful video, I think, for some basic, but important, information on PETs. The whole series is great in that way: fairly easy explanations of up-to-date information. I'll talk about the one of Follicular NHL in a few days.
Monday, December 21, 2009
Snowy Day
Well, they were calling for the big Mid-Atlantic storm to hit us late Saturday morning. It slowed down on the way, and diudn't get to us until about 9:00 at night. We had planned to spend the snowy day making cookies and wrapping presents, then watching Christmas specials all through the snowy night. Made a few cookies, wrapped a few presents, and watched The Year without a Santa Claus anyway. Love that Snow Miser and Heat Miser.It did indeed snow all night, falling at 2 or 3 inches per hour at one point. I'm still not sure what the official measurement was; with the wind, there were lots of drifts.
I've heard anywhere from 8.5 to 12 inches. I'm guessing it was closer to 12 near us.
That's Yale-New Haven Hospital up on the right.
Even though it was a Sunday, we still had a busy day planned. Peter's basketball game ended up getting cancelled, which was fine. He got a workout anyway, helping us shovel. And as a bonus, he got to work the snowblower for the first time.
Catherine and Isabel had plans to go downtown to see The Nutcracker with some friends; one of Catherine's BFFs was an angel in the production. Catherine was pretty fond of the cake decoration scene.
John tried to play in the snow with Strudel, but all she wanted to do was play fetch, and the balls got lost in the snow. Instead, she did 30 minutes on the treadmill to work off some energy.
As for me? I made cookies and wrapped presents.
Then I took a nap.
Saturday, December 19, 2009
Human Genome and Cancer
Really great, in-depth (but easy to read) article in Scientific American this month on the Human Genome Project and its effects on cancer research. Fascinating if you're into science; hope-inspiring if you're into cancer.
The idea of mapping human genes to pinpoint their role in cancer is about 20 years old. The entire gene sequence was finally mapped about 3 years ago, and now the National Institutes of Health have launched The Cancer Genome Atlas to try to map out the particular genes that might be the cause of certain cancers. (There's certainly plenty of evidence out there to suggest that genetic defects are a cause of cancer, as I've discussed lots of times before. Certainly evidence that Follicular NHL is caused by a switching of two genes.)
Unfortunately, says the article, this is a major undertaking; it will take about 10,000 times the work of the Human Genome Project to map out the DNA for 50 cancers.
The problem is that there is so much to deal with -- millions of genes that need to be identified and then compared to normal ones to determine which ones are out of sequence. Then there's the possibility that cancer comes from a combination of genes out of sequence, so the cause of the cancer could be different for each individual patient, even if they have what looks like the same cancer under a microscope. That's what "personalized treatment" is (and will be) all about, but it's going to be tough to get there.
But I still call the article "hopeful," as tough as it's going to be to complete it all. It's an international effort, which is kind of cool -- cancer binds us all. And it's hopeful because along the way, we're going to learn some interesting things about individual cancers, even if we don't get an overall big picture anytime soon. Small bits of knowledge might advance mor specialized projects already underway.
So here's to hope.
The idea of mapping human genes to pinpoint their role in cancer is about 20 years old. The entire gene sequence was finally mapped about 3 years ago, and now the National Institutes of Health have launched The Cancer Genome Atlas to try to map out the particular genes that might be the cause of certain cancers. (There's certainly plenty of evidence out there to suggest that genetic defects are a cause of cancer, as I've discussed lots of times before. Certainly evidence that Follicular NHL is caused by a switching of two genes.)
Unfortunately, says the article, this is a major undertaking; it will take about 10,000 times the work of the Human Genome Project to map out the DNA for 50 cancers.
The problem is that there is so much to deal with -- millions of genes that need to be identified and then compared to normal ones to determine which ones are out of sequence. Then there's the possibility that cancer comes from a combination of genes out of sequence, so the cause of the cancer could be different for each individual patient, even if they have what looks like the same cancer under a microscope. That's what "personalized treatment" is (and will be) all about, but it's going to be tough to get there.
But I still call the article "hopeful," as tough as it's going to be to complete it all. It's an international effort, which is kind of cool -- cancer binds us all. And it's hopeful because along the way, we're going to learn some interesting things about individual cancers, even if we don't get an overall big picture anytime soon. Small bits of knowledge might advance mor specialized projects already underway.
So here's to hope.
Thursday, December 17, 2009
Nice Story
I'm sure you've seen commercials for the Snuggie, a blanket with sleeves. Like this one.
Kind of goofy looking, and the commercials don't help with the image.
But there's a 12-year-old kid in Texas named Jack Barker who loves them. He's a leukemia patient, and he's trying to raise money to buy a Snuggie for everyone being treated for cancer at the Children's Medical Center in Dallas.
He says that during chemo treatments, he gets very cold from the drugs. But a regular blanket restricts his arms, so he can't play Wii or get on his computer, so he gets bored. The Snuggie was the perfect solution.
There's a nice story here about his quest, and his blog "Jack's Closet" has more information. He gave his first Snuggie to one of the lab techs who helps him during treatments, and who is battling brain cancer.
The folks who make Snuggies donated 100 of them, and he'll need to raise enough money to buy about 1000.
What a great kid.
Kind of goofy looking, and the commercials don't help with the image.
But there's a 12-year-old kid in Texas named Jack Barker who loves them. He's a leukemia patient, and he's trying to raise money to buy a Snuggie for everyone being treated for cancer at the Children's Medical Center in Dallas.
He says that during chemo treatments, he gets very cold from the drugs. But a regular blanket restricts his arms, so he can't play Wii or get on his computer, so he gets bored. The Snuggie was the perfect solution.
There's a nice story here about his quest, and his blog "Jack's Closet" has more information. He gave his first Snuggie to one of the lab techs who helps him during treatments, and who is battling brain cancer.
The folks who make Snuggies donated 100 of them, and he'll need to raise enough money to buy about 1000.
What a great kid.
Tuesday, December 15, 2009
E-patients
Disturbing news about doctors:
A web site called MedPage Today finds that many doctors are simply not up-to-date about the latest treatmens and other developments in their fields. As clinicians -- doctors working directly with patients -- they don't have the time to read all of the medical journals they would need to.
I could see this happening pretty easily. I'd compare it to being a teacher. There's lots of great stuff going on in my field, and even as an active researcher, I'm only up-to-date in a few specific slices of my profession. I can't keep up with it all.
Of course, a teacher being behind isn't good, but a doctor being behind is that much worse. I trust Dr. R a lot, but I've mentioned a couple of things to him that he's not aware of fully. I only need to stay up on Follicular NHL; he, as a hematology generalist, needs to know what's up with 30 different kinds of NHL, plus Hodgkin's Lymphoma, plus leukemia, plus whatever other blood diseases he might deal with. That's a lot.
Two ways to deal with this, I think: first, get second opinions, with the second coming from a specialist. For me, that's Dr. C, who works at a research hospital and university. I haven't seen him in almost two years, but I have to think he'd know what I'd be talking about if I mentioned something I'd just read about in a medical journal or website. I feel OK about that set up.
The other way to deal with this: become an e-patient.
Nice article in Scientific American this month on "participatory medicine," a developing approach to medicine that recognizes that many patients are (and should be) active participants in their care. I include myself in this group, of course, which are known as "e-patients," with the "e" being a nod to internet-based businesses from a few years ago (think "e-Harmony"), and an initial for "empowered, equipped, engaged, and enabled." The SA article talks about a new online journal called The Journal of Participatory Medicine that will look at the effectiveness of such active patients.
I think it's great. As the article says, twenty years ago, a patient had two choices: "Swallow the doctor's diagnosis whole, or spend weeks plowing through the primary research literature at a medical library—at the risk of alienating your physician." No more of that; there's too much information out there for patients who are willing to look for it.
Of course, that can be a dangerous thing, too. The support group gets one or two people a week writing, "I have swollen nodes, and the other night I wolk up hot and a little sweaty. Is it lymphoma?" The typical response is a very sympathetic and gentle variation of, "Could be, but it could be a hundred other things -- see your doctor," followed by some questions to be sure to ask. The self-diganosis thing isn't always good, but the turning to an online group is right in the middle of what Participatory Medicine is all about.
Some call the whole thing "Medicine 2.0," which mirrors the participatory nature of all "web 2.o" applications, which is of real interest to me professionally and personally.
Funny how life imitates research....
A web site called MedPage Today finds that many doctors are simply not up-to-date about the latest treatmens and other developments in their fields. As clinicians -- doctors working directly with patients -- they don't have the time to read all of the medical journals they would need to.
I could see this happening pretty easily. I'd compare it to being a teacher. There's lots of great stuff going on in my field, and even as an active researcher, I'm only up-to-date in a few specific slices of my profession. I can't keep up with it all.
Of course, a teacher being behind isn't good, but a doctor being behind is that much worse. I trust Dr. R a lot, but I've mentioned a couple of things to him that he's not aware of fully. I only need to stay up on Follicular NHL; he, as a hematology generalist, needs to know what's up with 30 different kinds of NHL, plus Hodgkin's Lymphoma, plus leukemia, plus whatever other blood diseases he might deal with. That's a lot.
Two ways to deal with this, I think: first, get second opinions, with the second coming from a specialist. For me, that's Dr. C, who works at a research hospital and university. I haven't seen him in almost two years, but I have to think he'd know what I'd be talking about if I mentioned something I'd just read about in a medical journal or website. I feel OK about that set up.
The other way to deal with this: become an e-patient.
Nice article in Scientific American this month on "participatory medicine," a developing approach to medicine that recognizes that many patients are (and should be) active participants in their care. I include myself in this group, of course, which are known as "e-patients," with the "e" being a nod to internet-based businesses from a few years ago (think "e-Harmony"), and an initial for "empowered, equipped, engaged, and enabled." The SA article talks about a new online journal called The Journal of Participatory Medicine that will look at the effectiveness of such active patients.
I think it's great. As the article says, twenty years ago, a patient had two choices: "Swallow the doctor's diagnosis whole, or spend weeks plowing through the primary research literature at a medical library—at the risk of alienating your physician." No more of that; there's too much information out there for patients who are willing to look for it.
Of course, that can be a dangerous thing, too. The support group gets one or two people a week writing, "I have swollen nodes, and the other night I wolk up hot and a little sweaty. Is it lymphoma?" The typical response is a very sympathetic and gentle variation of, "Could be, but it could be a hundred other things -- see your doctor," followed by some questions to be sure to ask. The self-diganosis thing isn't always good, but the turning to an online group is right in the middle of what Participatory Medicine is all about.
Some call the whole thing "Medicine 2.0," which mirrors the participatory nature of all "web 2.o" applications, which is of real interest to me professionally and personally.
Funny how life imitates research....
Saturday, December 12, 2009
A Special Day
Our baby is all grown up.
Strudel turns 3 today, which means she's 21 in dog years.
Here's Strudel's birthday video, now a birthday tradition.
Strudel turns 3 today, which means she's 21 in dog years.
Here's Strudel's birthday video, now a birthday tradition.
Friday, December 11, 2009
ASH: Treanda
There's more good stuff coming out of ASH than I can keep up with.
This one's about Treanda, also known as Bendamustine; it was approved a while ago as a treatment for Follicular NHL, and it has been used in Europe for a long time. Early clinical research showed that it seemed to be as effective as CHOP, but with much less toxicity.
Those results were confirmed at an ASH session, described in this article.
I think it's interesting that the article describes the Treanda/Rituxin combo as possibly replacing R-CHOP as "the standard first-line treatment for indolent and mantle cell lymphomas." It's very much up for debate whether R-CHOP is "the standard"; there are certainly plenty of other possibilities for first-line treatments. I guess R-CHOP might have longer remissions for fNHL, but it also takes away the standard treatment for transformed fNHL. As far as I know, Treanda does not work on aggressive lymphoma (or doesn't work as well as R-CHOP).
So it seems like that's the plan for Treanda: it provides one more early option -- maybe the best option other than R-CHOP -- for fNHL, allowing R-CHOP to be reserved for possible transformation.
Anyway, the numbers are pretty impressive, as you can see from the article. As effective as CHOP with less toxicity.
PatientPower has a video on this, too. Very encouraging stuff.
This one's about Treanda, also known as Bendamustine; it was approved a while ago as a treatment for Follicular NHL, and it has been used in Europe for a long time. Early clinical research showed that it seemed to be as effective as CHOP, but with much less toxicity.
Those results were confirmed at an ASH session, described in this article.
I think it's interesting that the article describes the Treanda/Rituxin combo as possibly replacing R-CHOP as "the standard first-line treatment for indolent and mantle cell lymphomas." It's very much up for debate whether R-CHOP is "the standard"; there are certainly plenty of other possibilities for first-line treatments. I guess R-CHOP might have longer remissions for fNHL, but it also takes away the standard treatment for transformed fNHL. As far as I know, Treanda does not work on aggressive lymphoma (or doesn't work as well as R-CHOP).
So it seems like that's the plan for Treanda: it provides one more early option -- maybe the best option other than R-CHOP -- for fNHL, allowing R-CHOP to be reserved for possible transformation.
Anyway, the numbers are pretty impressive, as you can see from the article. As effective as CHOP with less toxicity.
PatientPower has a video on this, too. Very encouraging stuff.
Wednesday, December 9, 2009
Random Wintery Stuff
It seems like winter has arrived.
*********************
Sunday was the Christmas pageant at the kids' school -- our last one. Every year, the first- and second-graders sing together as a kind of chorus, and the third-graders act out the Christmas story and sing any solos. This year, Catherine played an angel, and she looked beautiful. But now that she's in third grade, this was our last pageant. We'll miss it.
Sort of.
*********************
On Saturday, we decorated the house for Christmas. Nicely understated, I must say -- festive, but dignified. Nothing like what the guy below did to decorate his house
The original blog posting is here, but I'll include the picture and the explanation:
"Good news is that I truly out did myself this year with my Christmas decorations. The bad news is that I had to take him down after 2 days. I had more people come screaming up to my house than ever.
Great stories. But two things made me take it down.
First, the cops advised me that it would cause traffic accidents as they almost wrecked when they drove by. Second, a 55 year old lady grabbed the 75 pound ladder almost killed herself putting it against my house and didn't realize it was fake until she climbed to the top (she was not happy). By the way, she was one of many people who attempted to do that. My yard couldn't take it either. I have more than a few tire tracks where people literally drove up my yard."
Also, over the weekend, we had our first little bit of snow, enough to cover the lawn before it melted. Last night, we had more -- about four inches, and it's now turning to rain, with the high winds coming in a few hours. The kids have the day off, though Southern has classes (probably because it's the last day of the semester). John is especially happy; he was really looking forward to a snow day, and he and Catherine took appropriate measures to ensure that it happened.
Now, when I was a kid, we used to just wish for snow, maybe wake up extra early to see what happened and listen for cancellations. But these days, there are rituals. The kids put their pajamas on inside out and put a spoon under their pillow when they go to sleep, and that's supposed to guarantee a snow day. They've been doing it since Peter was in pre-school. And it seems to get more elaborate evry year -- pajamas inside out and backwards; lick the spoon first; put five spoons under the pillow; turn around five times before you lie down. Thanks to my sister-in-law Mary for finding a story from last winter about this weird ritual, which I thought was just a Connecticut thing (since it didn't exist in Massachusetts or Maryland when Isabel and I were kids) but apparently it's awhole East Coast thing.
Welcome to winter.
*********************
Sunday was the Christmas pageant at the kids' school -- our last one. Every year, the first- and second-graders sing together as a kind of chorus, and the third-graders act out the Christmas story and sing any solos. This year, Catherine played an angel, and she looked beautiful. But now that she's in third grade, this was our last pageant. We'll miss it.
Sort of.
*********************
On Saturday, we decorated the house for Christmas. Nicely understated, I must say -- festive, but dignified. Nothing like what the guy below did to decorate his house
The original blog posting is here, but I'll include the picture and the explanation:
"Good news is that I truly out did myself this year with my Christmas decorations. The bad news is that I had to take him down after 2 days. I had more people come screaming up to my house than ever.
Great stories. But two things made me take it down.
First, the cops advised me that it would cause traffic accidents as they almost wrecked when they drove by. Second, a 55 year old lady grabbed the 75 pound ladder almost killed herself putting it against my house and didn't realize it was fake until she climbed to the top (she was not happy). By the way, she was one of many people who attempted to do that. My yard couldn't take it either. I have more than a few tire tracks where people literally drove up my yard."
We just put candles in the windows....
*************************
Also, over the weekend, we had our first little bit of snow, enough to cover the lawn before it melted. Last night, we had more -- about four inches, and it's now turning to rain, with the high winds coming in a few hours. The kids have the day off, though Southern has classes (probably because it's the last day of the semester). John is especially happy; he was really looking forward to a snow day, and he and Catherine took appropriate measures to ensure that it happened.
Now, when I was a kid, we used to just wish for snow, maybe wake up extra early to see what happened and listen for cancellations. But these days, there are rituals. The kids put their pajamas on inside out and put a spoon under their pillow when they go to sleep, and that's supposed to guarantee a snow day. They've been doing it since Peter was in pre-school. And it seems to get more elaborate evry year -- pajamas inside out and backwards; lick the spoon first; put five spoons under the pillow; turn around five times before you lie down. Thanks to my sister-in-law Mary for finding a story from last winter about this weird ritual, which I thought was just a Connecticut thing (since it didn't exist in Massachusetts or Maryland when Isabel and I were kids) but apparently it's awhole East Coast thing.
Welcome to winter.
Monday, December 7, 2009
ASH: RIT
Gosh -- I don't know what gets me more excited about this time of year: the MLB Winter Meetings, with all of that great hot stove talk (trades, free agent signings, the whole deal), or the American Society of Hematology Conference, which also started today.
I'll let you read any baseball news on your own, unless something really good happens with the Red Sox getting some "new blood" (ha! hematology joke!), but for now I'll stick to ASH news, particularly some RadioImmunoTherapy news.
Spectrum Pharmaceuticals, which owns Zevalin, issued a press release a few days ago with the titles of sessions at ASH that involve Zevalin -- fourteen in all. I haven't read all of the abstracts, but several involve using RIT as part of stem cell transplants. From what I've heard before, some folks have been trying RIT instead of super-heavy chemo as a conditioning treatment for the transplant; the idea is the RIT would be less taxing than R-ICE or other typically used chemos. I'll have to read around and see what the RIT-SCT connection is here at ASH (don't you love all of these acronyms?).
Also: an interesting session on Zevalin after a Fludarabine-based chemo treatment for untreated fNHL patients. Very interesting to me, given my near-obsession with RIT, and Dr. R's mentioning that Fludarabine might be something he'd want to try with me, an untreated fNHL patient.
Another ASH & RIT-related link: Patient Power, a web site devoted to providing information to patients of serious illnesses of all kinds, is showing videos from ASH as part of its P2TV series. I'll show a few others in the next few days, but here's one on RIT, with one of the ASH presenters giving his perspective on what's being done in the field these days. Nothing earth-shattering, but it's a nice summary of what RIT is and how it's being used these days. (Check out those numbers he's throwing around -- worth hearing even if you've heard them before.)
I recommend browsing the Patient Power web site, not just the RIT video. Nice stuff.
More in the next few days.
I'll let you read any baseball news on your own, unless something really good happens with the Red Sox getting some "new blood" (ha! hematology joke!), but for now I'll stick to ASH news, particularly some RadioImmunoTherapy news.
Spectrum Pharmaceuticals, which owns Zevalin, issued a press release a few days ago with the titles of sessions at ASH that involve Zevalin -- fourteen in all. I haven't read all of the abstracts, but several involve using RIT as part of stem cell transplants. From what I've heard before, some folks have been trying RIT instead of super-heavy chemo as a conditioning treatment for the transplant; the idea is the RIT would be less taxing than R-ICE or other typically used chemos. I'll have to read around and see what the RIT-SCT connection is here at ASH (don't you love all of these acronyms?).
Also: an interesting session on Zevalin after a Fludarabine-based chemo treatment for untreated fNHL patients. Very interesting to me, given my near-obsession with RIT, and Dr. R's mentioning that Fludarabine might be something he'd want to try with me, an untreated fNHL patient.
Another ASH & RIT-related link: Patient Power, a web site devoted to providing information to patients of serious illnesses of all kinds, is showing videos from ASH as part of its P2TV series. I'll show a few others in the next few days, but here's one on RIT, with one of the ASH presenters giving his perspective on what's being done in the field these days. Nothing earth-shattering, but it's a nice summary of what RIT is and how it's being used these days. (Check out those numbers he's throwing around -- worth hearing even if you've heard them before.)
I recommend browsing the Patient Power web site, not just the RIT video. Nice stuff.
More in the next few days.
Saturday, December 5, 2009
ASH: Vaccines
More from the American Societyof Hematology (ASH) conference, which meets next week: an abstract on research on lymphoma vaccines, from researchers at Stanford.
The presentation is called "Adoptive Cell Therapy for Lymphoma: Use of CpG-Loaded Tumor Cells to Generate Potent Anti-Tumor CD4 T Cell Immunity." As the title implies, the researchers are trying a type of treatment called Adoptive Cell Therapy (ACT). ACT is used on a bunch of different cancers, not just lymphomas. It works by removing T-cells (which attack invaders) from a patient, and then using chemo to kill off the remaining T-cells in the body. In the meantime, the most aggressive of the T-cells that have been removed are identified and multiplied in the lab (ex vivo), and then put back into the patient, usually with something that will help them grow and identify and kill off the cancer cells. What makes this research different from other typs of ACT is that they do not make the cells grow outside the body in the lab, but inside the body (in vivo), and they use a particular substance that allows the T-cells to hook on to multiple sites on the cancer cell. They've only tried this approach on mice, but have had excellent results so far. Their two variations seem to overcome a couple of problems often found in ACT: the reintroduced T-cells tend to work only short-term, and they usually are created to hook onto only one site on a cancer cell. Very promising.
I'm particularly fascinated by vaccines, as I've written before, probably because the lymphoma specialist I saw at Yale seemed so excited by them. In theory, they should work very well, but in practice, researchers still can't quite get them right. The more I read about them, the more it seems like researchers are kind of chipping away at the problems, a little at a time. Each attempt seems to reveal a new problem that needs to be dealt with, but it means they're getting close. (Like those old Christmas tree light strings -- test each bulb to figure out which one isn't working, and eventually you'll find get it all to light up.)
But they're getting there....
The presentation is called "Adoptive Cell Therapy for Lymphoma: Use of CpG-Loaded Tumor Cells to Generate Potent Anti-Tumor CD4 T Cell Immunity." As the title implies, the researchers are trying a type of treatment called Adoptive Cell Therapy (ACT). ACT is used on a bunch of different cancers, not just lymphomas. It works by removing T-cells (which attack invaders) from a patient, and then using chemo to kill off the remaining T-cells in the body. In the meantime, the most aggressive of the T-cells that have been removed are identified and multiplied in the lab (ex vivo), and then put back into the patient, usually with something that will help them grow and identify and kill off the cancer cells. What makes this research different from other typs of ACT is that they do not make the cells grow outside the body in the lab, but inside the body (in vivo), and they use a particular substance that allows the T-cells to hook on to multiple sites on the cancer cell. They've only tried this approach on mice, but have had excellent results so far. Their two variations seem to overcome a couple of problems often found in ACT: the reintroduced T-cells tend to work only short-term, and they usually are created to hook onto only one site on a cancer cell. Very promising.
I'm particularly fascinated by vaccines, as I've written before, probably because the lymphoma specialist I saw at Yale seemed so excited by them. In theory, they should work very well, but in practice, researchers still can't quite get them right. The more I read about them, the more it seems like researchers are kind of chipping away at the problems, a little at a time. Each attempt seems to reveal a new problem that needs to be dealt with, but it means they're getting close. (Like those old Christmas tree light strings -- test each bulb to figure out which one isn't working, and eventually you'll find get it all to light up.)
But they're getting there....
Thursday, December 3, 2009
The Muppets
Well, I think every other blogger out there posted a link to this video, so I, too, am going to give you the Muppets' version of Queen's "Bohemian Rhapsody." If you know the song, you'll appreciate it even more; if you know the original video from Queen, it makes it all transcendent.
The Muppets will soon have their own YouTube channel, so expect more. (I loved the rationale behind it -- in the 70's, everyone had a variety show, so the Muppets had one, too; today, everyone is doing digital shorts, so that's where the Muppets are treading.)
They promise a Muppet version of "Carol of the Bells" in time for Christmas, but you can enjoy Beaker's "Ode to Joy" for now.
***********************
And I tried like heck to relate all of this to Lymphoma somehow, but all I could find when I Googled "Muppets and Cancer" (I'll bet the Google algorhyth had a good time with that one) was a bunch of other blogs by cancer patients who linked the "Bohemian Rhapsody" video and said how much they love the Muppets. Plus one guy who saw the video and commented on a message board, "OMG, that was so fantastic I think it gave me cancer!"
Well alrighty, then....
The Muppets will soon have their own YouTube channel, so expect more. (I loved the rationale behind it -- in the 70's, everyone had a variety show, so the Muppets had one, too; today, everyone is doing digital shorts, so that's where the Muppets are treading.)
They promise a Muppet version of "Carol of the Bells" in time for Christmas, but you can enjoy Beaker's "Ode to Joy" for now.
***********************
And I tried like heck to relate all of this to Lymphoma somehow, but all I could find when I Googled "Muppets and Cancer" (I'll bet the Google algorhyth had a good time with that one) was a bunch of other blogs by cancer patients who linked the "Bohemian Rhapsody" video and said how much they love the Muppets. Plus one guy who saw the video and commented on a message board, "OMG, that was so fantastic I think it gave me cancer!"
Well alrighty, then....
Tuesday, December 1, 2009
Transformation Research
Another abstract from the ASH conference. The name of this session is "Risk Factors for Early Transformation of Follicular Lymphoma (FL): Report From the National LymphoCare Study (NLCS)." The LymphoCare Study is a very large study of lymphoma patients, attempting to gather information about what those patients have done and have gone through in the past (as opposed to a clinical trial, where the patients would be part of a controlled experiment). This paper looks at Follicular NHL patients, and tries to determine if there is a connection between various factors and the risk of fNHL patients transforming to a more aggressive form of NHL.
The researchers looked at 2,734 fNHL patients, and looked at previous research that tried to determine if particular practices would increase the chances of transformation. [Just a reminder: about 30% of fNHL patients will have their slow-growing lymphoma change into a fast-growing lymphoma at some point; the process is known as "transformation." It's a great fear of fNHL patients -- maybe our biggest fear.] Previous research has suggested that watching and waiting increases the risk of transformation; the use of R-CHOP decreases the risk; and there is no difference in risk in using Rituxin as a first treatment as opposed to a second or later treatment.
Of the 2,734 patients, they found that 139 patients had transformed during the study.
As for watching and waiting, they found no difference in the risk of transformation between the 481 W&Wers and the 2253 who had received some kind of initial treatment. (Woo hoo!)
As for the R-CHOP (or other anthracycline-based treatment): 944 patients received R-CHOP as an initial treatment, and the risk was "not statistically different (although a trend exists)" compared to those who didn't receive that treatment.
It seems pretty rare to me that people are not given Rituxin as part of their treatment (R-CVP, R-CHOP, etc), given what we know about how much the addition of Rituxin improves the effectiveness of other treatments, but 450 patients in the study did not receive Rituxin as part of their treatment, and had a higher risk of transformation than the 1803 who did receive it.
My guess (and, hey, my one semester as a pre-med major allows me to make this guess) is that more research on the microenvironment of transformed cells will lead us to some answers about transformation risk. We'll be able to look at individual markers on the cells and say, "Whoa -- gotta watch this one." Pure speculation on my part, but I'm guessing that individual treatments don't have a huge effect on transformation.
We'll know more at some point, I guess -- hopefully soon -- but for now, it's nice to know that there is at least some path for fNHL patients to follow, based on this research. Watch and wait if you must, stick with anthracycline if it does happen, and make sure to chase it with a shot of Rituxin (call it a "B-Cell Boilermaker," or an "Antibody-tini," or something cute like that.....).
The researchers looked at 2,734 fNHL patients, and looked at previous research that tried to determine if particular practices would increase the chances of transformation. [Just a reminder: about 30% of fNHL patients will have their slow-growing lymphoma change into a fast-growing lymphoma at some point; the process is known as "transformation." It's a great fear of fNHL patients -- maybe our biggest fear.] Previous research has suggested that watching and waiting increases the risk of transformation; the use of R-CHOP decreases the risk; and there is no difference in risk in using Rituxin as a first treatment as opposed to a second or later treatment.
Of the 2,734 patients, they found that 139 patients had transformed during the study.
As for watching and waiting, they found no difference in the risk of transformation between the 481 W&Wers and the 2253 who had received some kind of initial treatment. (Woo hoo!)
As for the R-CHOP (or other anthracycline-based treatment): 944 patients received R-CHOP as an initial treatment, and the risk was "not statistically different (although a trend exists)" compared to those who didn't receive that treatment.
It seems pretty rare to me that people are not given Rituxin as part of their treatment (R-CVP, R-CHOP, etc), given what we know about how much the addition of Rituxin improves the effectiveness of other treatments, but 450 patients in the study did not receive Rituxin as part of their treatment, and had a higher risk of transformation than the 1803 who did receive it.
So they seem to have overturned a few assumptions about what we have known (or thought) about fNHL and transformation.
The authors caution that their information will be even better with a longer follow-up, and they also caution that this kind of "looking back" doesn't necessarily tell the whole story. They also suggest looking at an article from a couple of years ago called "Transformation of follicular lymphoma to diffuse large B-cell lymphoma proceeds by distinct oncogenic mechanisms," which suggests that....well, I'm not sure what it suggests, because it's really technical. But it seems to look at the kind of genetic pathways that allow transformation to take place, and says that there are two different mechanisms that lead to transformation.
My guess (and, hey, my one semester as a pre-med major allows me to make this guess) is that more research on the microenvironment of transformed cells will lead us to some answers about transformation risk. We'll be able to look at individual markers on the cells and say, "Whoa -- gotta watch this one." Pure speculation on my part, but I'm guessing that individual treatments don't have a huge effect on transformation.
We'll know more at some point, I guess -- hopefully soon -- but for now, it's nice to know that there is at least some path for fNHL patients to follow, based on this research. Watch and wait if you must, stick with anthracycline if it does happen, and make sure to chase it with a shot of Rituxin (call it a "B-Cell Boilermaker," or an "Antibody-tini," or something cute like that.....).
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