Thursday, December 31, 2009
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.
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!
Tuesday, December 29, 2009
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
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
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
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
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.
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
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
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
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
Friday, December 11, 2009
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
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.
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
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
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 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
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.....).
Sunday, November 29, 2009
But there are a few really good ones that are worth posting now, inlcuding this one: Since I've been giving Bexxar some love lately, it's nice to see positive results.
Here's the abstract from the ASH conference web site. The presentation is called "Tositumomab and Iodine I-131 Tositumomab for Previously Untreated, Advanced-Stage, Follicular Lymphoma: Median 10 Year Follow-up Results," and it discusses how well a group of Bexxar patients from 1996 to 2009 have been doing.
Very encouraging results. A total of 76 patients (all but one had Follicular NHL) were given Bexxar. 97% of the patients achieved a response, with 75% achieving a complete response (all traces of the lymphoma were wiped out by the Bexxar). Patients had been given Bexxar anywhere from 1 to 12 years before the results were measured, with a median of 10 years (that is, half had taken it more than 10 years ago, and half less than 10 years ago).
The median duration response was 6 years (half of the patients didn't get worse after that time). 40% of patients were progression-free after 10 years. For that 75% who had a complete response, the median progression-free state was almost 11 years.
Pretty good numbers, I'd say; lots of patients have done very well over the long term with Bexxar. The study isn't perfect (there's a pretty wide range of years involved, making it harder to really measure long-term impact; it's a single-arm study, which means they didn't compare Bexxar with some other treatment in the same study), but it's encouraging.
More evidence for people to consider RadioImmunoTherapy, if nothing else.
Thursday, November 26, 2009
I hope everyone is taking the time to truly think about what you are thankful for.
I looked back at my blog post from last Thanksgiving -- my first Thanksgiving with cancer. I have to say, I'm thankful for the same things as I was then: my doctors, and other healthcare givers; NHL researchers; my job; music; my support group; my blog readers -- those I know and those I don't know; my parents; my brother; my kids; my wife Isabel.
If anything, I'm twice as thankful for all of that this year, having had another year to appreciate them all.
This year, I want to add to that list. I'm thankful for time. Time, for me, has been a gift.
"Cancer victims who don't accept their fate, who don't learn to live with it, will only destroy what little time they have left." -- Ingrid Bergman
If you've read Lympho Bob in the past few weeks, you know how I feel about being called a "cancer victim." But, hey -- we're talking about the beautiful Ingrid Bergman, so I'm not going to harp on her terminology. The more important thing is what she has to say about time.
Maybe Bergman was a "victim"; when she died, cancer was still something that didn't get talked about in public too much. Breast cancer, especially, was something women were made to feel shameful about. So in that way, she was truly a victim -- of the time she lived in. And she made that statement when she did, indeed, have little time left.
Which is where she and I are different, I guess. I've said before that I have "the luxury" of having an indolent, slow-growing cancer. Maybe "luxury" is a little bit of an exaggeration. There's nothing terribly luxurious about cancer, no matter what the type. But it's a whole lot different from, say, having Burkitt's Lymphoma -- fairly rare, and very aggressive. I think about Joe Andruzzi sometimes; he played for the New England Patriots after graduating from Southern Connecticut State. When he was diagnosed with Burkitt's, he was given just a few hours to decide what to do. Just a few hours. Burkitt's Lymphoma is so aggressive, the tumors can double in size in 24 hours. I don't think my nodes have doubled in size in two years....
So I'm thankful to have had time. I've had time to learn more about what's going on with my body, with the world of lymphoma, with the world in general and how it affects me as a cancer patient. I don't know how I'd react to all of this if I had four hours to decide my fate. I'm happy I've had time. I work better that way, when I can know what to expect and think things through. I like to look down the road and know what's coming.
When I turned 40, some colleagues wanted to have a surprise party for me. Isabel warned them that I don't like surprises. I don't know if I don't like surprises -- I just don't like unhappy ones. (They pulled off the surprise party, and it was a happy surprise.) I know lots of people who wouldn't want to know what's in store, wouldn't want to think about it until they had to. I'd rather be prepared. Expect the worst and hope for the best.
So I'm thankful that I've had the time to do all of this the way I'd want to.
It's a cliche that no one knows how much time they have, and like most cliches, it's true. I've seen a ton of quotes from cancer survivors, cancer patients, cancer victims, who say that we have to live for today, and live every day to the fullest. It's a lesson that cancer patients are supposed to learn.
I'll be honest -- I have a hard time doing that. Maybe that's tied in to the whole "luxury of time" thing -- if I thought I had X number of days left, I'd try skydiving, or travel to the Taj Mahal, or do whatever else Jack Nicholson and Morgan Freeman did in The Bucket List. But I don't feel that kind of desperation. (I'm thankful for that, too.)
Sometimes I wonder if I should be doing more with my time -- if I should be acting more like a cancer patient is "supposed to," relishing every moment of every day. If I'm thankful for time, I shouldn't be wasting it, right?
I haven't exactly made a conscius decision NOT to be that way, to not smell every flower I pass, and run through every pile of leaves.
But a few months ago, I did decide that I would try to make one small change, one small way of making sure I don't waste the day. It isn't something I do every day, but I try not to shy away from it if the opportunity arises.
It was last March. I was driving home from work, listening to ESPN radio. They were replaying Jim Valvano's famous "Don't give up, don't ever give up" speech from the 1993 ESPY awards; it was the anniversary of his having given the speech. Valvano was a college basketball coach, whose underdog North Carolina State team won the national championship in 1983. Valvano went on to become a (very funny) college basketball commentator on TV. In 1992, he found out he had bone cancer, and that it had metastasized. The following March, he was awarded the Arthur Ashe Courage and Humanitarian award at the ESPYs, and that's where he gave his speech. If you've never heard it, or haven't heard it in a while, it's worth watching.
At some point in his speech, the teleprompter signals to him that he has 30 seconds left to speak. Valvano laughs and says, "They got that screen up there flashing '30 seconds,' like I care about that screen. I got tumors all over my body and I'm worried about some guy in the back going '30 seconds'." I was fighting back tears in the car.
Early on in the speech, he says this:
"To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special."
I remember how much that struck me -- laugh, think, and cry. That really is a full day.
And, when you think about it, while that makes for a full day, it's not even a whole day. Thinking is easy; I do that anyway, it's part of the job. I can take five minutes to sit and think, and some days, it seems like five minutes is about all I have. Laughing is easy, too, at least for me, anyway. Takes no time at all -- a 30 second Family Guy clip on Hulu.com usually does the trick for me.
Crying? That's tougher. I can't say I cry every day. But I don't avoid it. And crying doesn't take much time, either. The support group always has plenty of inspirational stories, links, videos -- some sad, some joyfully moving. Like things to make you laugh, there's no shortage out there of things to make you cry -- a two minute video, a few tears, and you're done.
Add it all up, and it's about ten minutes. Ten minutes and you have what Jimmy V called "a full day."
So maybe I'm not able to do the "cancer appreciation" thing very well, living every moment to its fullest. But I can give ten minutes a day, most days, for a thought, a laugh, and a cry. Even if I do "waste" the rest of the day, I haven't wasted time.
I'm too thankful for time to do something like that.
Tuesday, November 24, 2009
Handler was 24 years old when he was diagnosed with Acute Myelogenous Leukemia, soon after having gotten a part in a Neil Simon play on Broadway. The book goes through about six years of his life, from the diagnosis, to the intense chemo he received, to his attempts to get his life back together, to his relapse and auto stem cell transplant, and eventual recovery. It's an inspiring book in many ways, an instructive book for sure, and a very hard book to read at times, especially for a cancer patient -- he's a playwright as well as an actor, and the detail he uses in some scenes certainly lets you feel what he's going through.
One of the main themes of the book is Handler's need to do for himself (while he relied heavily on others, and resented them for it). Handler names actual names -- he trashes certain doctors and nurses for the crappy way they treated him, and he has pretty much nothing good to say about Sloan-Kettering in NYC (unlike Johns Hopkins in Baltimore, where he was treated wonderfully).
He attributes much of his survival to his own pushiness, demanding that certain things get done in a certain way, and getting a reputation as a "difficult patient"along the way. But this is where it was most instructive. He tells stories of being in the hospital and having nurses aides take his temperature with glass thermometers (he was post-transplant, and prone to any otherwise harmless infection, so he had his own thermometer in a glass of alcohol by his bed). The aides kept the thermometer in for 30 seconds, not the 4 minutes that would give an accurate reading. They didn't want to stick around his room for 4 minutes, they told him. So he took his own temp and kept his own chart, letting the doctors know when he was getting a fever, a sign that he might have an infection and might need antiobiotics to potentially save his life. (The doctors, instead of insisting that the aides do a better job, told him to just keep his own chart, which they followed instead of the official chart).
I wouldn't expect everyone to do the kind of research I do on NHL, reading articles in medical journals, being up on which treatments are moving from stage II to stage III clinical trials, that sort of thing. But the kind of basic observation that Handler did, and the insisting on a certain level of care (and a certain level of compassion) seem like the kind of thing anyone can do. And should do.
The book is downright funny in lots of places -- Handler is a very good writer. Early on in his treatment, he describes his attempts to, shall we say, "get romantic" with his girlfriend; it was their attempt to celebrate life and not conform to people's expectations of a cancer patient. But he was also hooked up to "twenty pounds of liquids" through lines in an IV stand, and he describes the two of them getting tangled up in all of those lines as they are getting intimate in a bathroom, the on;y place they could get some privacy in the hospital. Very funny stuff.
But sad, too, especially as he gets into detail about the after-effects of chemo and the transplant, and the physical and emotional toll the experience took on him. Those parts were hard to read sometimes.
Isabel wonders why I read books like this, especially when they can be so hard. At one point, I said "Wow" out loud while I was sitting next to her, reading , and she asked what I was reacting to. I told her Handler was talking about getting a 106 degree fever. It's that kind of thing that makes her wonder why I read books like this. I told her, "Because he survived."
I read books like this because I'd rather know what's potentially in store. And if I haveto read about that kind of thing, I'd rather read about it from a survivor, someone who came through stronger.
One warning for anyone who's considering reading it: this is an old book, written in 1996. At the end, Handler points out that much had changed in those few years from the mid- to late-80's, when he had his transplant, particularly in ways that doctors were able to bring down the chances of fatal infection considerably. Can you imagine how much has changed since 1996, when he wrote that? Which is an even better reason to read it -- as bad as his experiences were, twenty years ago, we've come so far in treating blood cancers.
Sunday, November 22, 2009
The line came to me because of a recent press release from Cornell on Heat Shock Protein Inhibitors. One such inhibitor, called PU-H71, may block a key mechanism that allows Non-Hodgkins Lymphoma cells to do their evil thing.
Let's step back a moment. What are Heat Shock Proteins, first of all? HSPs, as they are called, are proteins in cells that allow the cell to minimize damage from stress brought on by heat, medicines, starvation, etc. They are good things -- they keep cells from dying when bad things happen to them. Researchers have known about HSPs for a long time, and study them to better understand how to keep cells (and people) from dying.
But, like everything about cell mechanisms that is good and protective, HSPs cause problems (like cancer) when they do their job a little too well.
Heat Shock Protein Inhibitors, as the name implies, inhibit HSPs, and keep them from protecting cells (like cancer cells, whch we don't want to be protected). Here's a nice article published about a month ago that explains what HSP Inhibitors are, and how researchers are using one called PES to block an HSP called HSP70.
Now, on to the NHL news from Cornell. Researchers found that an HSP called HSP90 seems to join up with and protect a protein called BCL6, which researchers know is present in a common, aggressive NHL called Diffuse Large B-Cell Lymphoma (DLBCL). The Cornell researchers used an HSP Inhibitor (PU-H71) to block the HSP90 from helping out the BCL6; without it, the cancer cells are unprotected, and die.
So far, the HSP inhibitor has been very effective in laboratory models and animals tests. The next step is to start clinical trials with humans.
So it will be a while before it's available widely -- assuming it is as effective as it seems to be. But it's another reason for hope, and another possible triumph for micro-environment research. As the other linked article on that HSP70 shows, this could be a very important trend for research on lots of cancers. Very cool stuff.
Friday, November 20, 2009
The guest was Dr. Mitchell Smith of the Fox Chase Cancer Center in Philadelphia.
If you want to listen to the show, click here. It's about an hour long. The link near the bottom of the page might not work, so you can access it from the blue box at the top left. Also, be warned: at a bout the 12 minute mark, the host loses the connection to the guest, and it comes back just before the 18 minute mark. It was recorded live -- skip those 6 minutes and deal with it.
A few things that Dr. Smith said that stood out for me:
*I liked that he said that, with slower-growing-but-harder-to-cure indolent lymphomas, researchers need to be "smarter, not stronger." More and nastier chemo won't do the job. Researchers are working on lots of ways to outsmart indolent lymphomas. Smith, a researcher himself, is excited about the work being done with antobodies (hopefully, even more effective than Rituxin), and genetics-based microenvironment research.
* Smith talked about the differences between the different grades and stages of indolent lymphomas, and about what is called the FLIPI index. FLIPI stands for Follicular Lymphoma International Prognostic Index. The FLIPI index is a very rough guideline that takes several different factors into consideration in helping doctors and patients determine how aggressively to treat fNHL. I've read about FLIPI a few times in the last year, and thought about posting something about it. But, really, it's one of those things that can get people panicked, getting them to think they are automatically worse off than they probably are. More numbers that don't mean anything directly to an individual. Smith thinks likewise.
* Smith addressed the idea of indolent lymphomas being incurable. Interesting take: it's possible that we've already found a cure. But we won't know that for another 25 years, when lots of people have been in remission for that long. Then we can look back and say, "What we did in 2000 was actually a cure." Another reason I don't get too caught up in the idea of it being "incurable."
*He discussed Watch and Wait, too. He's one of those doctors who stiull believes that W&W is a good idea (not all do). He went through the usual arguments for Waiting, but he added another one: getting some treatments now might make you ineligible for some treatments that come down the chute later on. I also thought it was interesting that he said, in his expereince, it takes about 6-12 months for a "Waiter" to get used to the idea, but it gets easier when we realize we're doing OK, and we learn to trust our doctor.
*He gets into some current clinical trials, especially on the kind of biological treatments that so many specialists are excited about. "Maybe," he says, "some day, chemo will be a thing of the past." More effective, less toxic treatments? Amen to that.
Betsy and PAL are doing a really nice job with these webcasts; they're worth checking in on every week.
Wednesday, November 18, 2009
For my wonderful brother, who took the high road and promised not to say bad things about me in the Comments section of the blog, some Three Stooges.
The boys get hired to help prepare for a big birthday party -- Curly shaves some ice, then stuffs a turkey, does some dancing, and then helps Moe and Larry make and serve the cake:
And if you wanted the more traditional "Happy Birthday" song, you can get it here:
Hope you have a happy day, brother. See you soon.
Sunday, November 15, 2009
On Thurdsay, I had kind of a breakthrough with the research I've been doing, and I've been focusing a lot of my energy (and thoughts) on the subject. I'm pleased that my sabbatical hasn't been a waste. (Not that it had been a waste up to this point anyway -- I have already written and presented a well-received conference paper, and written and had approved a proposal for a new course.)
I've also spent the last week or so reading Evan Handler's book Time on Fire: My Comedy of Terrors. A few weeks ago, I linked to a PBS show on talking to your doctor, which included an interview with Handler, an actor who fought leukemia when he was 24 years old. Fascinating book. I still have a couple of chapters to go; I'll write about it in a few days.
I'll leave you with this:
Blogs are supposed to include lots of links, and I do my best to connect readers to other experiences. In about a week or so, a new set of 5 very special bloggers will be going online. They are part of Proctor and Gamble's project called "On The Go."
P & G will be sponsoring a public restroom in Times Square in NYC, through its Charmin brand, through the holiday shopping season, beginning November 23.
In a few days, they will finalize their choices for the five "On The Go Ambassadors," who will provide a full social media experience by providing us with "a daily peek inside the cleanest public restroom in Times Square," with updates through Blogger, Twitter, Facebook, flickr, and (God help us) YouTube. Links to all will be available through OnTheGo.com.
I wish my soon-to-be fellow bloggers much luck.
Wednesday, November 11, 2009
The article is written by a woman named Kathryn Gurland, who has seen two sisters go through a cancer experience, and now serves as a consultant to help others "navigate the system" (hence, "survivor's compass"). She's not so much a consultant with things like complex paperwork (though she may help with that, too); it's more about getting cancer patients to understand that they have control over much of the process of getting better.
It's very practical advice -- understanding that most cancers are not emergencies, and that there is time to stop and gather information about the best course of treatment; that it's OK to ask questions, even if it's the same question over and over because the answers aren't clear; that you should ask for what you need and make people aware of what you do not need.
Two pieces of advice from the article resonated with me especially.
The first is to make sure that everyone you deal with knows that you are a person. People treat people nicely; they don't treat "numbers" very well. I think it's a lot easier to do with your regular oncology team: the receptionist at Dr. R's and I talk about the Red Sox whenever I check in, and the woman who takes my blood knows that I like the radio station that she listens to, and tolerates it when I sing along. But I see them often enough that they know who I am, and they know my story, and they don't treat me like a number.
It's when I deal with other people, who usually aren't in a position to establish a relationship with anyone, that I instinctively let them know that I'm a person, and they need to deal with me as such. It's probably easier for some health professionals to just not get emotionally involved. So I force them to.
I had to have blood drawn at an outside facility a few months ago; the woman drawing my blood never even looked me in the eye. After she found a vein, I said to her, "That's a pretty good vein, isn't it?" She paused for a second, then said, "Actually, yes, it is very good." I told her, "That vein -- it's about the only healthy thing I have going for me." She laughed. We talked for a few minutes after that. She told me about her kids -- she was tired because her teenager was out late and she was waiting up for him.
And I like to mess with the PET scan people most of all. When I need to drink that nasty white milkshake-y thing, I tell them I'm imagining it's a pina colada and that I'm on a beach somewhere. Once, one of them told me I was out of my mind. Another time, when I was in the machine, the tech came on the speaker to ask me how I was doing. I told her she had made me extremely comfortable, and I was falling asleep, and I accused her of getting me groggy and then trying to sell me life insurance. But that made me a person.
The other piece of advice from the article that I really liked: Let everyone know what you don't need. I mostly liked it because of one of her examples -- "Not everyone wants to be thought of as engaging in a battle." I can imagine that's kind of an overwhelming thought for a lot of people, when sometimes just getting through the day quietly is enough of a struggle.
But it reminded me of something that someone told me once. I think it must have been Cancer Survivor's Day, and I told someone that I was a survivor -- anyone who had been diagnosed and was still alive was a survivor. This person, who actually does volunteer work raising money for breast cancer research, told me, "My friend X has breast cancer, and she told me that up until 5 years, you're a cancer victim, then after 5 years, you're a cancer survivor." I told her that victimhood didn't suit me, and that I'll never call myself a victim, and that once I label myself a victim, it means I've given up. I was a survivor, and I didn't plan on waiting five years to be able to call myself that. She was a little surprised at my answer, and so was I -- the whole thing got me a little pissed off -- but for whatever reason, her friend seemed to accept the label "victim" and I don't. It's a nice example of letting people know what you don't need.
Of course, the downside with all of this is that it is advice that's most effective when you know about it before you get cancer. But, as the article says, you start from wherever you are. It's never too late to apply the advice, and start empowering yourself. It's all about moving forward.
Monday, November 9, 2009
Today is the 20th anniversary of the fall of the Berlin Wall.
Tomorrow is the 40th anniversary of the premier episode of Sesame Street.
I remember the Berlin Wall falling. (Here's Peter Jennings announcement of the news from 1989.) Isabel and I had met a couple of months earlier, as we started grad school at Northeastern and we were both beginning our teaching careers. Our offices were next to each other. I remember her wearing Hard Rock Cafe Moscow sweatshirt; she had gone to the Soviet Union with friends the year before. (The Hard Rock didn't actually open up in Moscow until 2003; her illegally-acquired bootleg attire just made her more attractive to me - I dug the bad girls back then.)
I remember Isabel telling us about her trip, and how she got the clear impression that the Soviet Union wasn't going to last much longer. So in some ways, it was no suprise when The Wall fell.
But what I remember most about The Wall falling was a student coming to me and asking if she could miss class for four days. When I asked why, she said she was going to Berlin with her father. Apparently, Dad was an entrepeneur, and when he'd heard that the wall was coming down, he made arrangements to fly to Germany. His plan was to get as much of the rubble as he could so he could sell it. He wanted his daughter to come along. How could I say No? I made her promise to write about it when she got back.
And she did write about it. She wrote about watching her father take swings at the wall with a sledgehammer while she gathered the pieces up and shoved them in a bag. At one point, someone in a uniform yelled at them in German, so they took off running. Very entertaining stuff.
And she brought me back a piece of the wall. I still have it. Oh, sure, maybe it's just a three-inch chunck of concrete with blue paint on one side that she found on the street in Kenmore Square, but I still think it's a real piece of history. And if not, it's a good story.
Now, as for Sesame Street: This has come up before on Lympho Bob. I know the whole topic upsets my brother, because Sesame Street came out when I was a toddler, and my brother was already too old for it. So while I learned to count to 10 in Spanish and sing about the letter L, my brother "suffered through" Mr. Rogers, and only came out of childhood with the advanced people skills that he still possesses to this day. Sad, really.
I've loved Sesame Street all these years, and I still see life lessons in the episodes -- maybe even the kind of thing that you'd learn from Mr. Rogers. For example, one could easily learn about the Seven Deadly Sins through Sesame Street. Oscar is clearly a representation of Anger. Cookie Monster (my favorite, which I'm sure comes as no surprise) represents gluttony. I'm pretty sure that Lust is covered by The Count, but I need to think that through. Not sure how Big Bird fits into the whole scheme. Doesn't matter. The point is, I can count to 10 in Spanish.
But the life lesson I learned most and best from the Street was this: You've got to put down the duckie if you want to play the saxophone. Damn good advice for a cancer patient: some things you've just got to face.
Friday, November 6, 2009
Bexxar works in roughly the same way as Zevalin, but uses a different type of radiation. The choice of using Bexxar or Zevalin depends on a few factors (too technical to get into here). I think we hear more about Zevalin because the rights to it have bounced around a lot, and the company that currently has its rights has been fairly aggressive about getting different approvals for its use. But the important thing is, they both work well.
So I need to give some love to Bexxar, the quiet cousin of Zevalin, too.
Two recent pieces on Bexxar:
The first is an article from the most recent issue of the medical journal Current Oncology called "131I–Tositumomab in Lymphoma." (131I–Tositumomab is the real name for Bexxar.)
Of course, the best part of the piece is that one of the co-authors is J. A. MacEachern from McMaster University in Canada.
The article is a review of 18 clinical trials on Bexxar, and looks at trends in the trials. Bexxar shows a complete response in 65-72% of Follicular NHL patients who had been previously treated. The authors think Bexxar is a promising treatment, especially as an option for patients who have not had success with chemo.
Which was the case with Jamie Reno, whose name has come up before in Lympho Bob (a link to a piece in Newsweek, where he interviewed Farrah Fawcett's oncologist soon after she died, in which the doctor gave passionate support for RIT.) Jamie tried the chemotherapy treatment CHOP in 1996, but had his fNHL come back three years later. Doing extensive research on his own, he decided that Bexxar was his best option. He writes about it in an article on the web site called LymphomaInfo.com called "Radio-Immunotherapy Saved my Life." It's an easy read, and makes the point pretty clearly about RIT's usefulness. He points out that results from a Bexxar trial will be available next year, and may lead to Bexxar getting the same front-line status that Zevalin now has.
Here's to hope.
Wednesday, November 4, 2009
Quick review: Zevalin is a type of RadioImmunoTherapy (RIT). Since blood cancers like lymphoma are moving targets, conventional radiation treatments don't work on them, unlike solid cancer, which stay more or less in one place. But RIT bonds radiation with a monoclonal antibody that seeks out lymphoma cells, giving each cancer cell a zap of radiation when it adheres to it. RIT has proven to be a pretty successful treatment for many lymphoma patients.
However, RIT is very underused, for a bunch of reasons, including the fact that it needs to be administered by a radiation oncologist, not a regular oncologist. Another issue keeping it from being used has been its reimbursement status; from what I understand, doctors basically lose money when they administer RIT like Zevalin. Even though it is an injected treatment like chemo, it hasn't been reimbursed by Medicare/Medicaid as an injectioned drug, but as a radiation treatment, which pays less to doctors.
The new reimbursement status removes one more issue that seems to have been holding back more doctors from using RIT. I like to think it hasn't been a really big reason -- I have more faith in doctors than to think they'd withhold treatment that could save someone because they'd lose a few dollars. (I know, I know -- probably naive, but my faith in humanity is what helps me get out of bed in the morning). Still, it was probably a kind of last straw in a list of reasons for a lot of doctors.
And, of course, this good news comes pretty soon after FDA approval for Zevalin to be used as a consolidation treatment after chemo. Some see this as another barrier broken down, since regular oncologists will be able to treat first with chemo before passing a patient on to a radiation oncologist.
From what I've heard, patients had a big role in pushing for the new reimbursement status. Power to the people.
Monday, November 2, 2009
Ethics, I tell them, deals with gray areas -- things that aren't technically against the rules, but which might keep you up at night. An ethical dilemma is, by definition, an ethical problem with no clear right answer. No matter what you decide to do, someone is going to get screwed.
I read a really thought-provoking article from the New York Times last week on clinical trials and doctors who try to bend the rules to get their patients entered into a trial. It's a classic ethical dilemma.
Doctors have an obligation to their patients, to do whatever they can to see that the patient gets well. That's a kind of immediate obligation. They also have an obligation to see that their patients might be helped in the future, a long-term obligation.
Some doctors have patients who are no longer being helped by available treatments. But they know that some treatments available in clinical trials might be of some help. That's their immediate opbligation. But the patients don't necessarily qualify for the trial because they might have advanced cancer or other health probelms. So what do you do?
If you get the treatment to the patient, it might help. But if you bend the rules and get the patient into the trial, and it doesn't work (it's unproven, which is why it's ina trail) it might also throw off the trial results ("Wait -- we had a patient die while in the trial? We need to stop this now and investigate"). And there's the long-term obligation to the trial, ensuring the treatment is being tested fairly and properly.
Some drug companies have "compassionate use" policies that allow unapproved drugs still in trial to be given to patients who wouldn't qualify for the trial, once the FDA approves the one-time use, and, I would imagine, the patient assumes all of the risk.
Someone in the support group gavce a link for a blog by a breast cancer patient. The blog is called The Assertive Cancer Patient, and the author, a former journalist, is in the middle of a compassionate use fight with Wyatt/Pfizer. The fight isn't going well. I wish her luck.
(Incidentally, The Assertive Cancer Patient is a pretty good blog. The author is very down on some aspects of Breast Cancer Awareness Month, which is a really nice idea, but which she finds to be exploitative in some ways, especially by companies that Put on the Pink but don't seem to be giving any monetary support to breast cancer research. Click around her blog for posts from the last month.)
Anyway, it's a very interesting dilemma, and while compassionate use seems like a reasonable solution, it apparently isn't an easy one. But then again, with cancer, there never really are any easy answers, are there?
Saturday, October 31, 2009
Catherine as Cleopatra. She keeps asking us about the real Cleopatra, but there's darn little we can actually tell her. The affairs with famous Romans don't seem right, and the whole suicide-by-sanke thing will give her nightmares. We just tell her Cleopatra was beautiful, ands that seems to satisfy her.
He's probably not going to actually wear this tonight, since it's a little hard to hold both one's own head and a full bag of candy. He wore it to a Halloween dance last weekend, and won first prize for Most Original Costume.
Kind of a long way from the whole cute little firefighter thing....
Thursday, October 29, 2009
We're very proud of him.
Tuesday, October 27, 2009
They actually had the dedication last week. I didn't attend, so I don't know if it was like the Open House for the St. Raphael's Hospital satellite cancer center that opened a mile from my house last year. (Isabel and I wondered then about what an open house for a cancer center would involve, and joked that Chemo the Clown might show up and make balloon animal lymph nodes. We were close -- the local paper showed a picture of a CT Scan machine with balloons on it.)
All kidding aside, Smilow looks like a wonderful facility.
Yesterday, the New Haven Register had a nice article about the new Physician-in-Chief, Dr. Thomas Lynch. You'd certainly expect him to be at the forefront of cancer care, and he is. He's pushing two very important, realted things:
First, he wants to see more cancer patients participating in clinical trials. This is especially important for lymphoma patients -- there are so many promising lymphoma drugs in the pipeline that need to be tested on actual patients. Lynch says that only 3% of cancer patients participate in trials now; he'd like to see that go up to 20%. Participation in clinical trials was apparently a big issue at the Lymphoma and Myeloma International Conference this past weekend in New York (I'm looking for some abstracts from L & M, and I'll try to share some soon.)
The other thing that Dr. Lynch is pushing is Personalization, which is something that makes me happy. He thinks clinical trials and personalization strategies are connected: more people may participate in trials if they have a better understanding of their own cancer's micro-environment. He wants to have all patients at Smilow undergo this kind of testing to have that information available. That should make it easier to match patients with treatments still in trial.
I like the approach. The are already some cancers that use that kind of information to determine whether a treatment is likely to work before it is even given. Saves lots of time, money, and pain for everyone involved.
I'm officially a patient at Yale, having seen Dr. C there a long time ago, so I guess that means I'm a patient at Smilow, too. I'd be happy to know more about my own micro-environment.
In the meantime, Yale is one of the top 20 cancer hospitals in the country, and Smilow might actually move them up a little on the list. I'm in a good place....
Saturday, October 24, 2009
Someone alerted me to this video. It's a recent episode of the show Life (Part 2) on PBS. I've never seen it, but apparently it's sweekly show aimed at Baby Boomers.
The episode is called "Dancing with Doctors," and it focuses on having a good relationship with your doctor -- making sure you are getting the care that you need. A very important topic whether you have cancer or not. It's in three parts (30 minutes total). The first is a roundtable with doctors, and one is a former Hodgkin's Lymphoma patient, which adds a nice twist.
The second part is an interview with the actor Evan Handler. He's pretty recognizable -- played someone or other's bald, sweaty husband or lover or something on Sex and the City. He was diagnosed with a very aggressive leukemia when he was 24 and overcame it. He wrote a book about the experience called Time on Fire: My Comedy of Terrors.
Anyway, Handler basically survived because he was a self-centered jerk, and he decided that, given the kind of care he was receiving, the only way he was going to survive was to put himself first, not care whether anyone else survived instead of him, and see to it that he got what he needed.
I don't think I could be that aggressive, but I also have the "luxury" of having an indolent cancer, which has given me lots of time to think about what I need to do and what my options are. I hope I don't have to be a jerk, and I can let my knowledge of what's going on get me what I need.
Of course, I also have the luxury of having a good doctor who listens to me, which is pretty nice.
Anyway, Life (Part 2) looks like a pretty good show if you're a Baby Boomer, which I am not. (I'm an Gen Xer, which Peter has read about in the World Almanac for Kids; he thinks it's funny that Xers are "obsessed with pop culture." I don't know what he means by that. And fellow lymphoma survivor and Nodes of Gold recipent Mr. T says he pities the fool who thinks we're obsessed with pop culture.)
But Mr. T is a Boomer, and so is my brother, so they can both scan all of that advice on the PBS web site about "Fighting Agism" and whether getting old is funny. I may have cancer, but I'm still young.
Thursday, October 22, 2009
Will and I work together. He writes poetry, and writes about technology, and about J.D. Salinger, who wrote The Catcher in the Rye -- one of my favorite books by one of my favorite writers. And despite his being a Yankees fan, I still like Will a lot. We've unfortunately found more in common with one another lately -- like stories about nightmarish PET scans.
Anyway, Will's post pretty much speaks for itself:
I generally avoid my birthday and have avoided talking about health probs, but not today. As I turn 57, I want this list to know that I am three weeks into recovering from a liver transplant. It’s an amazing gift of life.
I was diagnosed with Primary Liver Cancer (hepatocellular carcinoma) on Dec 24 2008, operated on two weeks later, but too much cancer was found to remove surgically. My only chance of continuing my life was a transplant. In case you don’t know, there aren’t enough organs to cure folks in need of them and I’m hoping my experience will inspire us to donate our organs upon death. I feel as if I have added a new spirit to my soul because some 41 year old man from the Bronx had the kindness and love for others to become an organ donor. I had the benefit of the top docs at Mt. Sinai Hospital in NYC, a good healthcare plan, and a very supportive school, and I have the greatest wife in the world (and I’m not just saying that because I get lasagna and chocolate cake tonight).
The hardest part was waiting and knowing there are not enough organs for all those who need them—so if you haven’t done so already, PLEASE consider making yourself an organ donor. It’s a beautiful way to help others and I really feel that my donor’s spirit lives with mine now. I want to pass on the help he has given me even though I can never do as much for others as what he has done, but have to come out of my health privacy and even birthday shyness to let all the good folks I know that my experience has been incredibly life affirming.
At the end of chapter 12 in The Catcher in the Rye, Holden claims “people are always ruining things” but by the end of the book he learns that may not be true, and that at least he doesn’t have to become a person ruining things...we can help each other in a very powerful way by simply signing on as an organ donor. If I’m the first TP person you know, please try to understand why I think it’s so important to give life when you allow your organs to be used after your death. I know it sounds a bit strange and possibly morbid, but I feel so joyful and thankful that I believe if I share this good grace, others may do so as well.
With love and respect, Will
I can no longer give blood, let alone donate an organ. So throw in an extra one for me when you sign the little card.
Tuesday, October 20, 2009
....I have a Twitter account. I finally got to use "Lymphomaniac" as a handle, and I'm very excited about that. I can be tweeted at that address.
I have another confession.
....I haven't sent any tweets yet, and I don't really have any plans to.
If you don't know what Twitter is, it's a so-called micro-blogging service, but each "blog" entry is limited to 140 characters. I'm an English professor; I can't say "Good morning" in only 140 characters.
No, I need the wide-open, Kansas-prairie-like space of a blog, or a mega-blog, or whatever the opposite of a micro-blog might be, to flesh out the depths of my thoughts.
Anyway, in the couple of weeks since I've had the Twitter account (I'm using it for a research project), I've actually attracted a few followers, which I think is pretty funny, because I've offered nothing for them to follow except for the envy-producing name "Lymphomaniac."
One of my followers is the Lymphoma Research Foundation, a very cool organization that I've linked to a few times here, but never really highlighted (as far as I can remember).
LRF focuses on raising funds for lymphoma research and providing support for patients and caregivers. Some nice stuff on the site, including a series of videos and podcasts on different types of lymphoma (a video that I recently I linked to, focuisng on Follicular NHL, is up there). They also have a fantastic program called the Lymphoma Support Network, which connects new lymphoma patients with other patients, former patients, caregivers -- people who have been through it already. A very nice way of getting some support.
Finally, they have a sections called Stories of Hope, which features profiles of lymphoma patients who have fought and won their battles. One of the more recently posted profiles is of Betsy de Parry, whom I've writtten about before (she does the new series of podcasts for Patients Against Lymphoma). There are a couple of other familar faces there, too -- people I know from the support group (which is also a featured link on the LRF site).
This is one of those sites where you can click around for a while and keep finding new and interesting stuff. Highly recommended.
Tweet me about it if you visit and find something good. Just don't expect a response....
Saturday, October 17, 2009
The race is called the Bob Corda 5k, and it's part of Southern's homecoming festivities.I wasn't sure I was even going to run this one. They had been calling for nasty weather -- 40 degrees and rainy. Two friends dropped out Friday, thinking that getting up that early just wasn't worth it if they'd also be cold and wet.
But I stayed in, for one reason: last year's race was also cold, and it took place at 8:00 on the morning after Halloween. Small field, so I came in 3rd in my age group, and took home a $5 Dunkin' Donuts gift card for my trouble. I figured if the weather was nasty, I could take home another prize this year.
We had a busy morning: John had a soccer game in Branford at 9:00, and Peter had band practice in West Haven at 9:30 (in the opposite direction). The race was in New Haven at 8:00. So Isabel took Catherine to John's game, and Peter came along with me as my Official Support Crew. His duties included taking pictures of me at the start and finish. I'm sure it's just coincidence that there are no real usable pictures of me running, but he did take several nice shots of attractive female undergraduates.
The race began and ended at the student center, so Peter's duties mostly consisted of buying something at the Dunkin' Donuts and listening to his iPod for a half hour and staying out of trouble.
We had left home late, and arrived 15 minutes before the race started. My whole pre-run routine was thrown off. I had no time to listen to music, little time to warm up, and I forgot my Gatorade at home. I registered and tried to get warm (it was 38 degrees out at race time, but the rain held off.)
After I registered, I got my t-shirt. The woman giving them out asked Peter if he wanted one. "No thanks," he said. "Are you sure? They're free," she said. "No -- I'm good," he told her. "Peter," I said to him, "It's a free shirt--" he cut me off with "NO." We walked away from the table and asked why he was being that way. "I'm not wearing a shirt like that," he said.
Which is when I remembered that this year's homecoming theme is "A Fairy Tale Homecoming," and the shirt had a variation of the Princess Castle that served as the official logo.
OK, he's 12, and he's not much into princesses. We'll let the whole t-shirt thing go....
As I was getting ready to line up at the start, a man walked by with his daughter. She was about 7 years old. They were both running in the race. I was thinking to myself, "Well, I can probably beat her, anyway," when Peter said to me, "I got 5 bucks that the kid beats you."
Ladies and gentlemen, how about a big hand for my "support crew"....
I started out too fast, and had a whole bunch of people pass me, including two guys who were probably my age. But neither pulled out too far ahead -- maybe about 20 yards away from me.
About a half mile away from the finish is a nasty hill. Kills me every time. Just before the hill, I looked at my watch and thought, "I could finish this in under 28 minutes." Then the hill slowed me down. Considerably. After the hill, I thought, "I could finish this in under 29 minutes." Then I realized I had misremembered how much more running I still had to do, and I said to myself, "If I finish under 30, I'll be happy." I was just started to recover my breath from the hill.
I got to Founder's Gate, where you can start to see the finish line, and was trying to decide if I had enough left for one final kick to catch those other two 40-somethings in front of me, when I saw that they had gone off the course, taking a different (slightly shorter) path in front of the Arts Building. Obviously, this was their first time on the course, and obviously no one had guided them about where to go. So they still beat me, and probably won themselves DD gift cards in the process. It's an informal race -- no one was going to disqualify them.
And realistically, I probably wouldn't have caught them.
Peter and I had a quick post-race breakfast, and then I had to change my clothes and get him to band practice. I might very well have come in third for the 40ish men, but I haven't gotten a phone call or e-mail yet telling me where to pick up my gift card, so I'm probably not getting one.
Which is fine. The race benefits a scholarship fund, so it's better that we had a nice-sized field this year. Besides, I only race against myself.
My time of 29:28 comes to 9 minutes and 29 seconds per mile. Once again, I say: Not bad for an old fat guy with cancer.
By the way -- I beat that 7 year old girl.
By a lot.