A big congratulations -- and a bigger thanks -- to my brother Mike, who crushed this year's Pan-Mass Challenge ride this weekend.
Mike raised (as of this morning) $6,545 for cancer research at Dana-Farber in Boston. In six years of riding, he has raised over $38,000. Pretty awesome.
Unfortunately, I was not able to go this year to cheer him on, so I have no pictures. But from what I saw, he looked great.
Of course, even though the ride is over, it's not too late to donate. Visit his donation page at http://www2.pmc.org/profile/pfp.asp?profileid=MM0386. Think of it rewarding him for being awesome.
Thanks Mike. Keep pedaling.
Tuesday, August 6, 2013
Sunday, August 4, 2013
Transformed Follicular Lymphoma
Some good news from the upcoming Journal of Clinical Oncology: maybe transformation isn't as common among Follicular Lymphoma patients as we thought.
A reminder about transformation (though, if you're a Follicular Lymphoma patient, it's probably always in the back of your mind): Sometimes the nice, slow-growing Follicular Lymphoma turns into a less-good, faster-growing type of NHL, typically Diffuse Large B Cell Lymphoma, though occasionally something else equally nasty. Follicular Lymphoma is, according to the specialist I saw after I was diagnosed, "genetically unstable." It can change into something else.
Transformation is the worst nightmare of many Follicular Lymphoma patients, including me. It's more treatable the earlier it is detected, and we always wonder if that lump that popped up, or that weird cough, or that warm sweaty night is a sign of transformation. The fear gets less intense over time, but it's always there, at least a little bit.
Studies of the frequency of transformation are kind of inconsistent; I've seen statistics that show that anywhere from 15% to 50% of Follicular Lymphoma patients will eventually transform. I've also seen studies that show that show that transformation is virtually unheard of after 15 years, and others that refute that. So while I'm excited about what the Journal of Clinical Oncology article has to say, I'm also trying not to go overboard with my enthusiasm.
The article is called "Rates and Outcomes of Follicular Lymphoma Transformation in the Immunochemotherapy Era: A Report From the University of Iowa/Mayo Clinic Specialized Program of Research Excellence Molecular Epidemiology Resource." Researchers from Iowa and Mayo looked at 631 patients (a pretty good number) who were newly diagnosed with Follicular Lymphoma. They observed them over time (a median of 5 years, with some observed for a little over 9 years), and they compared the rate of transformation to the overall survival rate.
They found some good things:
Enough of that. For now, let's take it for what it is -- another reason for hope.
A reminder about transformation (though, if you're a Follicular Lymphoma patient, it's probably always in the back of your mind): Sometimes the nice, slow-growing Follicular Lymphoma turns into a less-good, faster-growing type of NHL, typically Diffuse Large B Cell Lymphoma, though occasionally something else equally nasty. Follicular Lymphoma is, according to the specialist I saw after I was diagnosed, "genetically unstable." It can change into something else.
Transformation is the worst nightmare of many Follicular Lymphoma patients, including me. It's more treatable the earlier it is detected, and we always wonder if that lump that popped up, or that weird cough, or that warm sweaty night is a sign of transformation. The fear gets less intense over time, but it's always there, at least a little bit.
Studies of the frequency of transformation are kind of inconsistent; I've seen statistics that show that anywhere from 15% to 50% of Follicular Lymphoma patients will eventually transform. I've also seen studies that show that show that transformation is virtually unheard of after 15 years, and others that refute that. So while I'm excited about what the Journal of Clinical Oncology article has to say, I'm also trying not to go overboard with my enthusiasm.
The article is called "Rates and Outcomes of Follicular Lymphoma Transformation in the Immunochemotherapy Era: A Report From the University of Iowa/Mayo Clinic Specialized Program of Research Excellence Molecular Epidemiology Resource." Researchers from Iowa and Mayo looked at 631 patients (a pretty good number) who were newly diagnosed with Follicular Lymphoma. They observed them over time (a median of 5 years, with some observed for a little over 9 years), and they compared the rate of transformation to the overall survival rate.
They found some good things:
- The transformation rate after 5 years was 10.7%. That's the lowest I've ever seen in a study.
- They found that an increase in LDH (lactate dehydrogenase), a blood marker, was a signal that transformation was possible. This seems pretty standard; I've been reading about LDH levels since I was diagnosed.
- The transformation rate was was highest in patients who were "initially observed" (14.4%) and lowest in patients who initially received Rituxin (3.2%). I assume the "initially observed" means those who watched and waited; it's not defined in the abstract I'm linking to. That said, 14.4% is still relatively low among the numbers I have seen -- up to 50%, as I said above.
- The median overall survival after transformation was 50 months -- again, a pretty good number. However, survival was better in patients who had transformed more than 18 months after their initial Follicular Lymphoma diagnosis (66% overall survival at 5 years) than those diagnosed sooner than 18 months (22%).
- Their conclusion is very positive, however: In the Rituxan Era, transformation rates seem to be dropping, and survival chances are improving -- overall survival of transformed patients is on par with those who have not transformed. they speculate that initial treatment (that is, choosing Rituxan right away) may help (again, this is the first time I've seen any suggestion that initial treatment choice has any effect on transformation).
Enough of that. For now, let's take it for what it is -- another reason for hope.
Friday, August 2, 2013
What Causes Lymphoma?
New researcher out of Emory University: incidents of Non-Hodgkin's Lymphoma are higher among people who live in regions near facilities that release benzene into the environment. Benzene is used as a solvent, is a component of some fuels, and is used in a whole lot of industries. Seems kind of tough to me to even nail down where it might come from.
The researchers make clear, though, that benzene exposure won't necessarily translate into developing lymphoma. It's a population study, looking at trends in incidents of the disease and distance from benzene release sites, not a study of individuals who were definitely exposed to benzene.
It's kind of hard, really, to make that kind of connection for lymphoma -- to say, Hey, you worked with this chemical, or that pesticide, or you were exposed to that amount of radiation, so that's what caused your follicular lymphoma (or whatever).
And I'm not convinced it's even worth knowing, unless you can know for sure.
A few weeks ago, someone wrote to the support group, asking people what caused their lymphoma. Some people knew (or claimed to know) for sure. Others were less confident, but willing to speculate anyway. And some of us (me included) just don't know.
Here's the problem that I have with the question: if we don't know for sure, what good comes from speculating? A whole lot of things can possibly cause lymphoma. If I get diagnosed, and I look back and identify something I did that might have caused it, can I end up feeling anything but guilt? That time I worked as a housepainter to help pay tuition -- could that have done it? Should I have taken a different job? Was it the radiation I received when I caught that other tumor early? Should I have held off and insisted on a different type of treatment, less effective but "safer"?
We make choices. We can't change the past.
To me, lymphoma patients have enough negative emotions to deal with. We don't need to add guilt or regret.
If I made a choice years ago, and I knew, absolutely, without doubt, that it caused my follicular lymphoma, then I'd want to know, because I'd devote a big chunk of my time to making sure others didn't make that same choice.
But I have no idea.
So I focus on the present, doing what I can to stay informed and do what I can to make good choices from here.
I suggest you do the same.
The researchers make clear, though, that benzene exposure won't necessarily translate into developing lymphoma. It's a population study, looking at trends in incidents of the disease and distance from benzene release sites, not a study of individuals who were definitely exposed to benzene.
It's kind of hard, really, to make that kind of connection for lymphoma -- to say, Hey, you worked with this chemical, or that pesticide, or you were exposed to that amount of radiation, so that's what caused your follicular lymphoma (or whatever).
And I'm not convinced it's even worth knowing, unless you can know for sure.
A few weeks ago, someone wrote to the support group, asking people what caused their lymphoma. Some people knew (or claimed to know) for sure. Others were less confident, but willing to speculate anyway. And some of us (me included) just don't know.
Here's the problem that I have with the question: if we don't know for sure, what good comes from speculating? A whole lot of things can possibly cause lymphoma. If I get diagnosed, and I look back and identify something I did that might have caused it, can I end up feeling anything but guilt? That time I worked as a housepainter to help pay tuition -- could that have done it? Should I have taken a different job? Was it the radiation I received when I caught that other tumor early? Should I have held off and insisted on a different type of treatment, less effective but "safer"?
We make choices. We can't change the past.
To me, lymphoma patients have enough negative emotions to deal with. We don't need to add guilt or regret.
If I made a choice years ago, and I knew, absolutely, without doubt, that it caused my follicular lymphoma, then I'd want to know, because I'd devote a big chunk of my time to making sure others didn't make that same choice.
But I have no idea.
So I focus on the present, doing what I can to stay informed and do what I can to make good choices from here.
I suggest you do the same.
Monday, July 29, 2013
Another Cancer-Sniffing Dog
From a story last week:
Bella the cancer-sniffing dog. She detected her owner's breast cancer before the mammography did. She threw up while her owner was going through chemo. And she's the subject of a book. Very cool dog.
This is why I missed my dog so much when I was away (even though she never detected my cancer).
Bella the cancer-sniffing dog. She detected her owner's breast cancer before the mammography did. She threw up while her owner was going through chemo. And she's the subject of a book. Very cool dog.
This is why I missed my dog so much when I was away (even though she never detected my cancer).
Thursday, July 25, 2013
Promising RIT for Follicular Lymphoma?
There's a new cowboy in RITville.
(OK, that metaphor isn't my best. I'm on vacation.)
There's a new version of RIT that may be available at some point. Results from an early clinical trial look good.
RadioImmunoTherapy (RIT) is a fairly effective, but fairly underused type of treatment for NHL. Right now, there are two versions of RIT available, Bexxar and Zevalin. They are both effective, and have some differences between them that make the choice of one or the other better for some patients. (Lymphomation does an excellent job of comparing the two, which isn't surprising, because they do an excellent job at pretty much everything.) RIT works by providing radiation to lymphoma cells. Because blood cancer cells are moving targets, traditional radiation treatments don't work. So RIT treatments use something that can find and attach themselves to cancer cells (like Rituxan) and have that molecule carry a tiny dose of radiation, delivered directly to the cancer cell. Pretty cool system.
The current issue of the Journal of Nuclear Medicine reports on the results of a clinical trial for a version of RIT that uses luteum-177, added to Rituxan, as its delivery method. Lu 177 differs from the other RIT types because it doesn't penetrate tissue as deeply (and therefore won't travel too far beyond the targeted cancer cells, sparing more healthy cells).
The purpose of this trial was to determine the best dosage for this treatment, and it seems like they got decent results -- about 52% of patients got a response (29patients overall; 6 had a complete response and 9 had a partial response).
However, the results for the group of patients with Follicular Lymphoma were particularly good (it "appeared to have striking activity in follicular lymphoma," said the authors). of the 11 patients with FL, 9 had a response, for an 82% response rate. Excellent.
It's an early study, so it will need to go through more steps, and recruit more patients for tests. And then, there's the whole issue of whether or not it will be practical -- that is, whether or not it will run into the same problems as Zevalin and Bexxar, with their reimbursement and logistical problems. But maybe this will be the one that gets some attention and forces a re-evaluation of the uses of RIT.
(OK, that metaphor isn't my best. I'm on vacation.)
There's a new version of RIT that may be available at some point. Results from an early clinical trial look good.
RadioImmunoTherapy (RIT) is a fairly effective, but fairly underused type of treatment for NHL. Right now, there are two versions of RIT available, Bexxar and Zevalin. They are both effective, and have some differences between them that make the choice of one or the other better for some patients. (Lymphomation does an excellent job of comparing the two, which isn't surprising, because they do an excellent job at pretty much everything.) RIT works by providing radiation to lymphoma cells. Because blood cancer cells are moving targets, traditional radiation treatments don't work. So RIT treatments use something that can find and attach themselves to cancer cells (like Rituxan) and have that molecule carry a tiny dose of radiation, delivered directly to the cancer cell. Pretty cool system.
The current issue of the Journal of Nuclear Medicine reports on the results of a clinical trial for a version of RIT that uses luteum-177, added to Rituxan, as its delivery method. Lu 177 differs from the other RIT types because it doesn't penetrate tissue as deeply (and therefore won't travel too far beyond the targeted cancer cells, sparing more healthy cells).
The purpose of this trial was to determine the best dosage for this treatment, and it seems like they got decent results -- about 52% of patients got a response (29patients overall; 6 had a complete response and 9 had a partial response).
However, the results for the group of patients with Follicular Lymphoma were particularly good (it "appeared to have striking activity in follicular lymphoma," said the authors). of the 11 patients with FL, 9 had a response, for an 82% response rate. Excellent.
It's an early study, so it will need to go through more steps, and recruit more patients for tests. And then, there's the whole issue of whether or not it will be practical -- that is, whether or not it will run into the same problems as Zevalin and Bexxar, with their reimbursement and logistical problems. But maybe this will be the one that gets some attention and forces a re-evaluation of the uses of RIT.
Monday, July 22, 2013
Intestinal Bacteria and Lymphoma
I'm a little hesitant to link to this article, but I'm going to anyway, because I think it's pretty fascinating.
Researchers from UCLA's cancer center have found a potential link between lymphoma and certain types of gut bacteria. The presence of these bacteria seems to play a role in encouraging lymphoma growth.
I can't access the full online article, but that link is to a press release from UCLA.
I'd like to see the full article because I have some hesitancy about this one. If it plays out, it could be pretty great -- treatments could be developed that kill off bad bacteria and encourage good bacteria in the gut.
But I can also see this going in a less-good direction -- claims that Greek yogurt will cure cancer.
My biggest reason to be hesitant, though, is that the study involved mice, not people. Lots of strange things happen when bacteria are moved from one organism to another.
I'm especially interested in this because of my own gut issues, and I'd like to see if there's some connection between them. But that's going to take some serious research.
We'll file this one under "keep and eye on it."
Researchers from UCLA's cancer center have found a potential link between lymphoma and certain types of gut bacteria. The presence of these bacteria seems to play a role in encouraging lymphoma growth.
I can't access the full online article, but that link is to a press release from UCLA.
I'd like to see the full article because I have some hesitancy about this one. If it plays out, it could be pretty great -- treatments could be developed that kill off bad bacteria and encourage good bacteria in the gut.
But I can also see this going in a less-good direction -- claims that Greek yogurt will cure cancer.
My biggest reason to be hesitant, though, is that the study involved mice, not people. Lots of strange things happen when bacteria are moved from one organism to another.
I'm especially interested in this because of my own gut issues, and I'd like to see if there's some connection between them. But that's going to take some serious research.
We'll file this one under "keep and eye on it."
Friday, July 19, 2013
Jon Lester
CNN.com ran a nice piece a couple of days ago written by Jon Lester, Boston Red Sox pitcher and lymphoma survivor. The piece highlights Lester's charity, NVRQT, which stands for "Never Quit"; the group focuses on pediatric cancer -- supporting research AND supporting kids with cancer.
I am, of course, a Boston native, and a life-long Red Sox fan, so Lester has played a pretty big role in my cancer life.
Lester was diagnosed with Anaplastic Large Cell Lymphoma in 2006. It's an aggressive NHL, and he went through some heavy duty chemo, returning to the Sox in 2007, and pitching in the decisive game 4 of their World Series victory that year.
I was diagnosed a few months later. When we broke the news to the kids, I had my arms around my boys. My oldest was the one who best understood was was going on with me, and I told him he'd heard of NHL before, reminding him about Jon Lester. When he heard Lester's name, his whole body relaxed in my arms. He knew things were going to be OK. Of course, Lester had a very different type of Lymphoma that I have, but that didn't matter. What mattered was that he became a kind of symbol for us of someone who overcame this.
About 4 months after I was diagnosed, Lester threw a no-hitter. I turned on the game in the 8th inning and saw that Lester was three outs away from the no-no. I got my son out of bed, and we watched Lester finish it up. Needless to say, it was a pretty big day in our house.
And, of course, I wore my Jon Lester shirt for every one of my Rituxan appointments.It's still my lucky shirt when I need one.
Lester's not having a great year on the mound, and there is once again talk of trading him in the next couple of weeks. If that happens, I'll be pretty bummed. But it doesn't mean I won't get myself a new shirt.
I am, of course, a Boston native, and a life-long Red Sox fan, so Lester has played a pretty big role in my cancer life.
Lester was diagnosed with Anaplastic Large Cell Lymphoma in 2006. It's an aggressive NHL, and he went through some heavy duty chemo, returning to the Sox in 2007, and pitching in the decisive game 4 of their World Series victory that year.
I was diagnosed a few months later. When we broke the news to the kids, I had my arms around my boys. My oldest was the one who best understood was was going on with me, and I told him he'd heard of NHL before, reminding him about Jon Lester. When he heard Lester's name, his whole body relaxed in my arms. He knew things were going to be OK. Of course, Lester had a very different type of Lymphoma that I have, but that didn't matter. What mattered was that he became a kind of symbol for us of someone who overcame this.
About 4 months after I was diagnosed, Lester threw a no-hitter. I turned on the game in the 8th inning and saw that Lester was three outs away from the no-no. I got my son out of bed, and we watched Lester finish it up. Needless to say, it was a pretty big day in our house.
And, of course, I wore my Jon Lester shirt for every one of my Rituxan appointments.It's still my lucky shirt when I need one.
Lester's not having a great year on the mound, and there is once again talk of trading him in the next couple of weeks. If that happens, I'll be pretty bummed. But it doesn't mean I won't get myself a new shirt.
Subscribe to:
Posts (Atom)