Wednesday, September 30, 2009
Anyone who's been reading for a while probably has a pretty good idea of the basics of Non-Hodgkin's Lymphoma, and of Follicular Lymphoma in particular. But I know I pick up readers every now and then who find Lympho Bob through a search, and are piecing together what they can and trying to make sense of what being a lymphoma patient is all about.
So to give one more shot at increasing awareness of lymphoma (which, really, not a whole lot of people are aware of, compared to other cancers, even though NHL is the fastest-growing type of cancer in the United States, and lymphomas taken together are the fourth or fifth most common type of cancer), I'm providing some links. Two come from the excellent support organization Patients Against Lymphoma, which has a couple of new resources for anyone trying to make sense of being a Lymphoma patient (or someone who loves such a patient).
The first is a brochure that PAL put together describing the basics on lymphoma. I think it will be an especially useful resource for the newly diagnosed, but also for those who love them who haven't been in on the discussions with oncologists and want to know what the heck is going on. It gives a nice, basic overview.
The second is a new series of Webcasts -- basically, something like an online radio show -- on Lymphoma-related topics. The host will be Betsy de Parry, whom I've mentioned before; she's an author (her book is called The Roller Coaster Chronicles), and a great advocate of RadioImmunoTherapy like Zaevalin (she wnet through two strong chemos that didn't work, and then RIT, which saved her life in 2002). But the best part about Betsy -- her grandmother is a McEachern.
Betsy will have a new guest every week on her Webcast (they'll be broadcast Wednesdays at 8pm, with a link for listening later on) discussing treatments, emotional effects of being a cancer patient, and other relevent issues. It sounds like it will be a great source of information, and having heard Betsy being interviewed on the radio, I think she'll make a great host.
One more really nice "basics" link: a talk by Dr. Laurie Sehn from the University of British Columbia, called "The Basics of Lymphoid Cancers: What Are They and How are They Treated?" It's a 25 minute slide show and audio presentation that she gave last year at a conference for lymphoma patients. She does a really nice job of presenting information on what lymphoma is and how it's treated. A little on the science-y side, but very clear overall. She knows her audience well: non-experts with a keen interest. One of the better presentations of the science behind lymphomas that I've seen or heard.
Hope everyone had a good Lymphoma Awareness Month!
Monday, September 28, 2009
Thursday, September 24, 2009
Why, then, do I continue to be ignored every year by the McArthur Foundation when they hand out their so-called "Genius Grants"?
Isabel and I were driving home Tuesday afternoon from getting our flu shots when we heard the news about the Genius Grants being awarded. It was a national news program, so they wouldn't have necessarily mentioned my name the way a local news program would have. But something told me this wasn't my year -- yet again. I was short-tempered with Isabel all the way home, fully expecting the message light on the phone would not be flashing.
And I was right.
I suspect that the guy who did win the grant that was meant for me was Timothy Barrett, a paper maker and paper historian. Wow. Genius-level stuff. For the second straight year, someone who does a marginally-significant art wins over me because it happens to preserve some dying culture.
Two people from New Haven won -- Richard Prum, an orthinologist and paleontologist. Kids love dinosaurs, so he got the kid vote. Works with bord feathers, apparently. But since he's "head curator of vertebrate zoology at the Peabody Museum of Natural History," which is five minutes from our house, and which we are members of, we'll let him have one. And Mary Tinetti, who focuses on why the elderly fall and how to prevent that from happening. So I guess that's important.
Then there's Lin He, who's doing research on molecular-level stuff with cancer, and why cancer cells won't die like normal cells. So we'll give one to her.
Plus, Rackstraw Downes, an artist, who has a really cool name. Rackstraw.
That leaves, like, 20 other artists, writers, scientists, bridge engineers, and probably one or two other "historians of paper," whatever the hell that means, who won instead of me.
Where's the justice, people? Where's the love? Not a blogger among the winners.
That's it, I guess -- the McArthur people are technology-haters. Maybe when they join the 21st century, I'll get my due.
Tuesday, September 22, 2009
Neither of them dealt with lymphoma specifically, but they did discuss the ways that researchers are using new knowledge of the human genome to better understand the ways that cancers work. I've written a few times here about similar research in lymphoma.
One of the articles was in Parade magazine on Sunday, called "Dramatic Breakthroughs in Cancer Treatments." The title might be a little bit exaggerated in the "breakthroughs" part, but it does describe the direction that cancer research is moving in. It's not as dramatic as the title promises.
The other is called "Solving the Cancer Puzzle," from this month's Men's Health. It's a little more muted in its excitement; the cancer researchers who were interviewed keep mentioning "incremental changes" in getting closer to understanding how cancer works. But they do, when pushed, admit how excited they are about their research. Cautious excitement sounds great to me.
Both articles really focus on the the ways our understanding of the biology of cancer is affecting treatment. Neither of them use the word "personalization," but that's what they're getting at -- eventually being able to look at an individual patient's biopsy and say "X would be the most effective treatment." One researcher in the MH article predicted that one day we wouldn't refer to cancer by body part, but by gene: two lung cancers might look the same under a microscope, but two different gene mutations caused them, so we'll say one patient has a 134 chromosome cancer, and another a 68 cancer, or something like that. Very cool. And then they'll know that 134 responds better to Y chemotherapy, while 68 repsonds better to Z.
It's a ways away, of course, but I'll go with cautious excitement and keep following the developments.
Sunday, September 20, 2009
This one was the 5k Roche Run, which I ran last year, too. Kind of a sad back story: the race is named for two brothers, both of whom died young. The proceeds go to a scholarship fund for the daughter of one of the brothers.
It was run in beautiful Brooksvale Park and on the Farmington Canal Trail that borders it.
Seems like I always have an excuse for a run that doesn't go as well as I'd hoped (though I never use The Great Big Excuse). This one was no different: I thought I'd be done in by a tag sale.
Friends of ours called Friday afternoon and said they were putting together a last-minute tag sale for Saturday morning, and asked if we had any stuff we wanted to get rid of that we'd like to drag over to their front yard. Before I could even get to the stuff we wanted to sell, I had to drag down 10 boxes of baby clothes from the attic and bring them to Goodwill. Then we cleaned out a few things from the attic, basement, and garage. Not much, just big stuff that was in good shape. I twisted my knee trying to move around all the crap that was still in my way, but it wasn't too bad by the time I went to bed. But I was still concerned.
In the end, we made $55 at the tag sale, and I'm a little closer to reclaiming my workshop, which had become a storage area. (Of course, the workshop might be turned into a music studio soon, but that's a blog post for another time.)
Saturday morning was downright chilly -- sunny, but about 53 degrees and windy at race time. I was exhausted from dragging stuff over to our friends' house at 7:00am.
There wasn't too big a crowd for the race, which was nice. I hate it when it's all crowded. I started out as part of a pack that gradually thinned out. My twisted knee started hurting about 5 minutes into the race, and when I sped up a little bit to pass a non-race participant (the Canal Trail is a public biking/running/walking trail, and it's busy on Saturday mornings), my legs rebeled. I slowed down, and the people I had been passing started to pass me. I was sure I was going to have a lousy time.
I eventually settled into a groove, one that let my legs go without hurting too much, and at the half-way point, I was pleased with my time, which would put me close to 30 minutes, my goal.
I always like to pick someone early on in the race that I want to keep up with or pass (usually one of those few people in the race who is fatter than me). This time, it was a young woman running with her dog, a Jack Russell Terrier. Boy, that dog could run. I stayed with them for a while, but near the tunaround, they pulled away from me. I really wanted to shout, "No, lady, slow down! My kids will never let me live it down if I get beaten by your dog!" But I kept them in sight, and by about the two mile mark, the little guy gave it up. I passed and didn't look back.
Not exactly a banner day when the best thing that happened is that you didn't get beaten by a 15 pound dog.
I was still in that groove for the rest of the race, and when we turned off the Trail and back into the park, I knew I had about a third of a mile to go. My goal had been to break 30 minutes again, and when I checked my watch at the turnoff, I thought I might have a shot at breaking 29. Might have done it, but some walkers blocked my path. (Nah -- I probably wouldn't have done it even without the walkers.)
I did have a little left at the end to do something like a sprint for the last 200 yards or so. That's me "sprinting" in the picture above.
Overall, I was pleased, given how bad I felt at the beginning. They haven't posted official results (and I'm guessing they're not going to, since no one collected my bib number at the finish), so I don't know how many runners overall or where in the pack I finished. That's fine -- I was pleased with my 9:22 per mile pace. I'm inching it back downward.
For an old fat guy with cancer, I do OK.
Thursday, September 17, 2009
According to the video clip, toad venom has been used for centuries as a cancer treatment; it induces spontaneous cell death in cancer cells. Looks like they're taking a complimentary medicine approach -- combining the traditional therapy with modern chemotherapy. As the video shows, there seems to be some success there.
When I hear about this sort of thing, I usually think of that Ally McBeal episode about the guy who licked toads to get high.
But now, the conspiracy theorist in me thinks:
1) ABC News is owned by Disney.
2) Disney's next animated film is an updating of the Princess and the Frog.
3) This news clip is essentially an extremely subtle product placement strategy.
That's really sadly cynical, but the more I think about it, the more it makes sense....
Monday, September 14, 2009
First, my 10 year old cryptozoologist son wants the world to know that a man in Texas may have found a chupacabra, a mythical beast that feeds on the blood of livestock [the name means "goat sucker"]. Cryptozoology is the scientific study of animals that may or may not exist, like Bigfoot or the Loch Ness Monster. There have been purported sitings of chupacabras over the years which have turned out to be false. John and his cryptozoology pals are really hoping this one turns out to be the real deal.
Video from CNN is here, and a text version is here. Scientists from Texas A & M took a DNA sample last week. We anxiously await the results.
This might be the greatest website ever. At least the greatest practical website ever -- YouTube is the greatest non-practical time-wasting website ever. So far.
But this one is practical. It's called RunPee, and it tells you which parts of current movies are suitable for you to get up and go to the bathroom for, because you won't miss anything important. It provides the running time of the movie you can get up, how long the unimportant scene is, and a summary of what you missed.
They're working on an iPhone application. Genius.
OK, this one is cancer-related:
Last Wednesday, Yankee Stadium offered free prostate cancer screenings before and during the game against the Rays, according to a blogger for the Hartford Courant.
I don't even have a joke for this. Sometimes they just write themselves.
Thursday, September 10, 2009
The idea of a vaccine is so intriguing to me. When a met with Dr. C, the lymphoma specialist, soon after I was diagnosed, he told me there were a lot of treatments for fNHL being developed, including a vaccine (see one of my very early posts -- I can still remember how excited I was at the idea). Vaccines in general work by giving a weakened or dead sample of a disease to a patient, allowing the body's immune system (usually its T-cells) to recognize this harmless shell of the disease and develop a way to kill it off. Then, when the real version of the disease invades the body, the T-cells already know how to deal with it, and kill it off before it can get out of hand.
Vaccines for cancers are basically the same. Take a sample of the cancer cells from an individual patient, find a way to get T-cells to attack it (maybe by giving modified T-cells that won't let the cancer cells slip past, maybe by signalling the patient's T-cells to attack), and put it all back into the patient. It should work, in theory.
Lots of research going on now is identifying the proteins and other features of cancer cells that make T-cells see the cancer cells as "safe," and thus just leave them alone. All of that should help in developing vaccines. So far, clinical trial results on existing vaccines have been pretty tepid. Some success, but not nearly what had been hoped for.
Part of the reason the success has been so slow is the lack of funding for immunologic research, says one expert in an article published in the New York Annals of Science, which recently had a special issue of papers from a Cancer Vaccine Symposium. According to this expert, lots of what we know about curing cancer comes from immunologic research -- examing stuff like how certain proteins on cancer cells fool the body into thinking they're harmless. He cites Rituxin and stem cell transplants as having been possible because of that kind of research. But, he argues, there is so little money available for that kind of research that a very promising approach is being wasted. Vaccines, he says, would attack cancer from many different paths; right now, most treatments only attack by a single path, which gives the cancer cells lots of opportunities to escape. (They're sneaky things, those cancer cells. Like Steve McQueen.)
Another expert argued recently that the reason vaccines haven't had much success is because the clinical trials are being designed incorrectly. This one is an opinion article, so it's not based on original research. But the author does have some credentials for having the opinion. The link goes to the journal Nature, a top-flight science journal, but it only gives an abstract. From the quick summary, he says that studies show that cancer vaccines should work in theory, but that the clinical trials with human patients aren't working, which leads him to think it's in the trials, not in the vaccines, where we could find the problem. He notes that, because of the failed trials, people are getting skeptical that vaccines will work.
Both of these articles give me some hope for vaccines. The idea of a vaccine makes a lot of sense -- use the body's own natural defenses, rather than adding harmful chemicals that shouldn't be in there. Whether lack of funding, or problems figuring out the best way to test and administer the vaccine, it seems like some outside problem is getting in the way.
We can't let that happen. We almost lost Zevalin because of negative outside forces unrelated to the treatment's effectiveness. I don't know if some vocal people will step forward and demand that a lymphoma vaccine gets some attention, but based on Dr. C's infectious excitement 19 months ago, there certainly seems like there's some support out there.
Tuesday, September 8, 2009
Someone on the support group posted this video, and I got my cancer humor fix. It features Dr. Alan R. Cohen, Physician-in-Chief at the Children's Hospital of Philadelphia, and star of this video (along with some of his patients and staff), which explains how he treats Medulloblastoma, the most common brain cancer among children.
Before I give you the link, I need to warn you that there is some (well, a lot of) language and situations that might offend, though no more than in some rap videos (but not Snoop Dogg videos, if that's your thang). You've been warned.
It's not every day you get see a world-renown pediatric oncologist who's also straight up gangsta, yo. Here's the link. Enjoy.
Saturday, September 5, 2009
What this means is that Zevalin may now be used immediately after chemotherapy in treating Follicular NHL and other indolent lymphomas. Zevalin had been previously approved for use only when the chemo stoppsed working. This approval basical encourages combining chemo and Zevalin together. The hope is that more oncologists will give Zevalin a try now, since trial results show such wonderful success when it is used in this way.
The approval came after results from the FIT Study (First-line Indolent Therapy Study), a long-term study which showed that progression-free survival more than doubled when Zevalin was given after one of several chemotherapy treatments (including Fludarabine, CVP, and CHOP, the chemos that I've discussed with Dr. R).
Oncologists have been reluctant to use Zevalin for a bunch of reasons -- difficulty in administering it, reimbursement oddities -- mostly stuff that has nothing to do with its effectiveness. They'll have fewer excuses now, it is hoped.
This is very good news for what seems to be a very promising treatment. There should be some small rejoicing in the NHL community today.
Friday, September 4, 2009
It sounds like it's going to be a great place. The official name is the Smilow Cancer Hospital, and the new chief physician is currently (or was until recently) head of oncology at Massachusetts General Hospital -- nice credentials.
I like the rooftop garden that they have planned. Very peaceful. Plus, there are "infusion suites," which sounds great. I assume a suite means I'd get an extra seating area or a kitchenette with microwave and mini-fridge or something.
Yale already has an excellent reputation for oncology care -- US News and World Report ranks it in the top 25 hospitals in the country. (You know what's really comforting to me? Five of the top 25 are within about 2 hours of my house.) I think this new facility will only increase their reputation.
Of course, I have a financial interest in all this -- my registration fee (plus a small extra donation) from the Hope is Coming 5k went to the hospital building fund. I better get a brick on the sidewalk or something.
Wednesday, September 2, 2009
I assume anyone reading is already pretty well aware of Non-Hodgkins Lymphoma.
Still, a nice site called Cancer Consultants has a few links related to increasing your awareness of blood cancers. If you scroll down a little, you'll see a nice video geared toward people who have been recently diagnosed. Great advice: try not to panic, keep your head about you and understand that you have time to think, get a second opinion. Cancer Consultants is a roup that runs web sites about cancer, and they are committed to providing up-to-date information. It's a nice source for all types of cancer.
The Leukemia and Lymphoma Society, of course, is also a great source of information.
Look them up again, even if you think you knopw plenty. Always something new to learn.