This is about a week old now, but it's worth taking a look at: a post-ASH press release from Sloan-Kettering touting its new blood test, to be used as a diagnostic tool for blood cancers.
The blood test will look for 400 variations in genes that signal a blood cancer. It could, for example, show that chromosomes 14 and 18 have switched places, which would indicate that the patient has Follicular Lymphoma. Those 400 different variations can detect a variety of lymphomas, leukemias, and myelomas.
Here's why it's important: because it will be used as a tool not only for diagnosis, but for treatment decisions as well. As genetic research gets more and more sophisticated, we are finding that cancers that seem the same under a microscope might actually be different if viewed on a genetic level (that is, much more closely than we can see with a simple microscope).
To give you a Follicular Lymphoma example, a key sign of FL is the 14;18 translocation, with those two chromosomes switching places and causing all kinds of problems -- it basically shuts of the bcl2 protein that tells the cells to die. However, Follicular Lymphoma also sometimes shows another switching involving the protein BCL6. Now, a standard look through a microscope will show that the cells from a biopsy look the same -- like Follicular Lymphoma cells. But only a genetic analysis will show that there is either one or two of those chromosome switches taking place.
Now imagine that we have a patient diagnosed with Follicular Lymphoma who had the new Sloan-Kettering blood test. Her doctor knows that the 14;18 chromosome is often dealt with successfully with something like Bendamustine. But imagine that this doctor also knows that early results from a clinical trial for a new treatment (let's call it Bobimab) has shown remarkable results if the patient has BOTH translocations. The doctor knows that this patient would be an excellent candidate for that trial because the test shows both translocations.
Much less guessing. Much more targeted treatments. This is what personalized medicine is supposed to be all about.
(And if anyone from a pharma company or a university lab is reading, please feel free to name your next Monoclonal Antibody after me. Bobimab is much less intimidating than what you usually name things, with all of those Vs and Xs and Zs.)
For now, the test will take 3-4 weeks to get results back. For someone with Follicular Lymphoma, that's not a big deal. For someone with a more aggressive blood cancer, treatment will have to start right away, so maybe it would be more useful for a second round of treatment. I can also see the test getting easier over time, with results coming back faster (though that isn't something that Sloan-Kettering is promising).
All in all, I think this should be bigger news than it is. All or most of this information is already available, but I think this is the first test that can detect so many variations at once. And I'm guessing the test is scalable: as more genetic information is discovered, it can be added to the test.
Very cool stuff.
Monday, December 16, 2013
Friday, December 13, 2013
Rituxan + Pidilizumab for Follicular Lymphoma
I think most of the main ASH announcements are over now. We'll have to wait for the post-ASH commentary that will likely come over the next few weeks. (I imagine Patient Power, for example, will have a wrap-up video sometime soon.)
But does that mean the Follicular Lymphoma news is over for now? Absolutely not. In the latest issue of The Lancet Oncology is a report on a phase 2 study of Rituxan and Pidilizumab that shows some promise -- good activity against Follicular Lymphoma cells, with side effects that aren't too horrific.
I'll be honest -- I don't know a whole lot about Pidilizumab. From what I can tell, Pidilizumab has been studied as a treatment for solid tumors as well as lymphomas. A phase 2 study of DLBCL patients after auto stem cell transplant was pretty successful. I believe that this is the first phase 2 on Follicular Lymphoma patients.
Pidilizumab seems pretty cool. It is, like Rituxan, a Monoclonal Antibody (which is why it has that -mab ending on the name). Just as Rituxan targets the protein CD20 on B cells, Pidilizumab targets something called PD-1, which stands for Programmed Cell Death 1. PD-1 does a job we don't want it to do: it blocks T cells from killing off the cell. So when a cell has PD-1 on its surface, it signals to T-cells that it should be left alone.
So guess what kind of cells has PD-1 on it? Yeah. Follicular Lymphoma. Grr. The FL cells have other substances within them that trigger PD-1 to block the T cells.
But Pidilizumab seems to do the job. It targets PD-1 and blocks it, thus allowing T cells to come and do their job. (It "unleashes" the T cells, as the article puts it, which sounds much cooler.)
So how successful is Pidilizumab, when combined with our old pal Rituxan? In this small phase 2 study, 29 Follicular Lymphoma patients were given the -mab combo, and 19 of them (66%) had a response, with 15 of those 19 (a little more than half overall) having a Complete Response. That's pretty good. Rituxan has about a 40% response rate, with 11% CR. So combining the two increases the effectiveness.
More importantly, it does so with about the same side effects as Rituxan alone.
So Pidilizumab certainly seems like a keeper. Obviously, a phase 3 trial, with more participants, is going to be the next step. There's some suggestion that maybe trying it on its own, in a trial with a direct comparison to Rituxan, might also happen in the future.
Certainly something else to keep an eye on. Maybe another arrow in the quiver.
But does that mean the Follicular Lymphoma news is over for now? Absolutely not. In the latest issue of The Lancet Oncology is a report on a phase 2 study of Rituxan and Pidilizumab that shows some promise -- good activity against Follicular Lymphoma cells, with side effects that aren't too horrific.
I'll be honest -- I don't know a whole lot about Pidilizumab. From what I can tell, Pidilizumab has been studied as a treatment for solid tumors as well as lymphomas. A phase 2 study of DLBCL patients after auto stem cell transplant was pretty successful. I believe that this is the first phase 2 on Follicular Lymphoma patients.
Pidilizumab seems pretty cool. It is, like Rituxan, a Monoclonal Antibody (which is why it has that -mab ending on the name). Just as Rituxan targets the protein CD20 on B cells, Pidilizumab targets something called PD-1, which stands for Programmed Cell Death 1. PD-1 does a job we don't want it to do: it blocks T cells from killing off the cell. So when a cell has PD-1 on its surface, it signals to T-cells that it should be left alone.
So guess what kind of cells has PD-1 on it? Yeah. Follicular Lymphoma. Grr. The FL cells have other substances within them that trigger PD-1 to block the T cells.
But Pidilizumab seems to do the job. It targets PD-1 and blocks it, thus allowing T cells to come and do their job. (It "unleashes" the T cells, as the article puts it, which sounds much cooler.)
So how successful is Pidilizumab, when combined with our old pal Rituxan? In this small phase 2 study, 29 Follicular Lymphoma patients were given the -mab combo, and 19 of them (66%) had a response, with 15 of those 19 (a little more than half overall) having a Complete Response. That's pretty good. Rituxan has about a 40% response rate, with 11% CR. So combining the two increases the effectiveness.
More importantly, it does so with about the same side effects as Rituxan alone.
So Pidilizumab certainly seems like a keeper. Obviously, a phase 3 trial, with more participants, is going to be the next step. There's some suggestion that maybe trying it on its own, in a trial with a direct comparison to Rituxan, might also happen in the future.
Certainly something else to keep an eye on. Maybe another arrow in the quiver.
Wednesday, December 11, 2013
What Does The Spleen Do?
I guess there's an OK chance that you've actually seen this video, since it's had 500,000 views on YouTube in 2 days, but I'm posting here because I thought it was pretty funny.
It's a parody of the very popular video (over 250,000,000 views) "What Does The Fox Say?" which tries to answer, in song, the question of its title. That video/song was created by the Norwegian band Ylvis. Extremely silly, very catchy, and lots of fun.
The video I am embedding below is called "What Does The Spleen Do?" and it was created by a group from the Harvard Medical School. It also attempts to answer the question of its title -- with much less success, but with all the catchiness of the Fox song.
This is, of course, very relevant to Follicular Lymphoma; stage IV lymphomas often have spleen involvement. Dr. R taps on mine regularly.
For the record, the spleen really is a blood filter (which is why B cells can collect there), and plays some other roles in immunity. But what's more important, after you watch the video, is knowing what it doesn't do.
Enjoy.
It's a parody of the very popular video (over 250,000,000 views) "What Does The Fox Say?" which tries to answer, in song, the question of its title. That video/song was created by the Norwegian band Ylvis. Extremely silly, very catchy, and lots of fun.
The video I am embedding below is called "What Does The Spleen Do?" and it was created by a group from the Harvard Medical School. It also attempts to answer the question of its title -- with much less success, but with all the catchiness of the Fox song.
This is, of course, very relevant to Follicular Lymphoma; stage IV lymphomas often have spleen involvement. Dr. R taps on mine regularly.
For the record, the spleen really is a blood filter (which is why B cells can collect there), and plays some other roles in immunity. But what's more important, after you watch the video, is knowing what it doesn't do.
Enjoy.
Sunday, December 8, 2013
ASH: Gene Therapy
The ASH stories keep rolling in.
This one is from Yahoo! News -- a big enough deal to make it to the mainstream press. The piece is called "Gene Therapy Scores Big Wins Against Blood Cancers." The focus is not on Follicular Lymphoma, but it seems important enough, and adaptable enough, to consider it a possibility in our futures.
Gene therapy involves removing T cells and reprogramming them to go after cancer cells. A little reminder about how the body normally works: when an invader (bacteria, or a virus) enters the blood stream, it is attacked by white blood cells. There are several types, including B cells (which go nutty in ways that result in Follicular Lymphoma) and T cells, which attack the invaders in a variety of ways. (Here's a nice video that shows you more detail, if you're interested.) As long as things are working normally, the immune system can identify anything that doesn't belong and take acre of it.
Of course, cancer is the definition of things not working normally. Cancer cells don't belong, but they are able to mask themselves in ways that make the immune system think that they do belong. And they have the nasty ability to figure out how to get around any attempts to get them to drop that mask. (Cancer cells are stupid smart.)
Gene therapy messes with cancer cells in cool ways. T cells are removed from the patient's body and then reprogrammed in ways that allow them to get behind the mask, identify cancer cells as invaders, and get rid of them.
This isn't a single process; there are several presentations, from different teams, targeting different cancers, that fall under the general idea of "gene therapy." It seems like one project that targets leukemia (both acute and chronic) is the longest and most successful. The Yahoo article discusses a couple of others that deal with "lymphoma," but they don't give any indication of what type (Hodgkin's or Non? Aggressive or Indolent? Can't say.) I tried to search the ASH abstracts using just the names of the universities that are mentioned in the article, to see if I could find which sessions discuss gene therapy. I couldn't find them very easily. Oh well.
I also looked in the "ASH News Daily" newsletter that gets published during the conference, to see if there is anything in there about it. I'll look more later; I got too distracted by the "Hematology Crossword Puzzle" on page A8 of the Saturday edition. (The clue for 16 Across: "Pre-endoscopy rectal cleansing." Five letters. I wish I was kidding...Don't doctors want some vocabulary-based entertainment that gives them a little bit of a break from work, for crying out loud?)
Anyway, the Yahoo article is certainly exciting, and it's one more reason for some hope. I've got a couple more press releases and news stories that I'm looking at, that I hope will be worth sharing over the next couple of days.)
This one is from Yahoo! News -- a big enough deal to make it to the mainstream press. The piece is called "Gene Therapy Scores Big Wins Against Blood Cancers." The focus is not on Follicular Lymphoma, but it seems important enough, and adaptable enough, to consider it a possibility in our futures.
Gene therapy involves removing T cells and reprogramming them to go after cancer cells. A little reminder about how the body normally works: when an invader (bacteria, or a virus) enters the blood stream, it is attacked by white blood cells. There are several types, including B cells (which go nutty in ways that result in Follicular Lymphoma) and T cells, which attack the invaders in a variety of ways. (Here's a nice video that shows you more detail, if you're interested.) As long as things are working normally, the immune system can identify anything that doesn't belong and take acre of it.
Of course, cancer is the definition of things not working normally. Cancer cells don't belong, but they are able to mask themselves in ways that make the immune system think that they do belong. And they have the nasty ability to figure out how to get around any attempts to get them to drop that mask. (Cancer cells are stupid smart.)
Gene therapy messes with cancer cells in cool ways. T cells are removed from the patient's body and then reprogrammed in ways that allow them to get behind the mask, identify cancer cells as invaders, and get rid of them.
This isn't a single process; there are several presentations, from different teams, targeting different cancers, that fall under the general idea of "gene therapy." It seems like one project that targets leukemia (both acute and chronic) is the longest and most successful. The Yahoo article discusses a couple of others that deal with "lymphoma," but they don't give any indication of what type (Hodgkin's or Non? Aggressive or Indolent? Can't say.) I tried to search the ASH abstracts using just the names of the universities that are mentioned in the article, to see if I could find which sessions discuss gene therapy. I couldn't find them very easily. Oh well.
I also looked in the "ASH News Daily" newsletter that gets published during the conference, to see if there is anything in there about it. I'll look more later; I got too distracted by the "Hematology Crossword Puzzle" on page A8 of the Saturday edition. (The clue for 16 Across: "Pre-endoscopy rectal cleansing." Five letters. I wish I was kidding...Don't doctors want some vocabulary-based entertainment that gives them a little bit of a break from work, for crying out loud?)
Anyway, the Yahoo article is certainly exciting, and it's one more reason for some hope. I've got a couple more press releases and news stories that I'm looking at, that I hope will be worth sharing over the next couple of days.)
Saturday, December 7, 2013
ASH Day! Zevalin and Follicular Lymphoma
It's opening day of the ASH Conference! Woo hoo! Lots of talk about blood cancers from some stupid smart people!
(I'd normally go all Boston with that and say "wicked smaht," but yesterday I overheard two college students talking about the Honors College at their school, and one of them said, "Yeah, you have to be stupid smart to get in there." I love it. I assume he was using "stupid" as an adverbial intensifier, like "very," or "wicked." I'm going to try to find any excuse to use that phrase all the damn time now.)
Anyway, today is the opening day of the ASH conference, and that means lots of drug companies and universities will be putting out press releases over the next week to tout the results of the research that will be reported at the conference. I saw my first last night, from Spectrum Pharmaceuticals.
I like Spectrum's press release, because it mostly gives information without any spin, which some press releases give. (Of course, there's only so much spin a drug company can give without the FDA getting upset.) But Spectrum provides the session numbers and titles of the presentations that involve their products, and some basic information about the products themselves.
They highlight three treatments that are being discussed at ASH. The first is Folotyn, which is discussed as a treatment for T cell Lymphoma and for Multiple Myeloma. The second is Marqibo, also known as Vincristine Sulfate Liposome, which is already approved for Acute Lymphoblastic Leukemia (ALL), and is here discussed as part of a treatment regiment for DLBCL. I like that one of the presentations is substituting Marqibo for a the NON-Liposomal Vincristine in CHOP, which makes CHOP into CHMP, which is perfrect, because Marqibo sounds like the name of a species of monkey that my son the animal lover would be especially fond of.
Enough monkey jokes: Marqibo is like Oncovin, which is the "O" in CHOP, but it is covered in a fat-like substance that slows down how quickly it is absorbed by the body. The idea is that this may cut down on toxicity, and also allow it to stay in the bloodstream and do its job a little longer. That's what the ASH presentations are getting at.
As you know, I know a little about DLBCL, and much less about T Cell Lymphoma, ALL, and Myeloma, so I won't say anything else about those other Spectrum products. But it's the third one discussed in the press release that is relevant: Zevalin.
Zevalin is a type of RadioImmuno Therapy (RIT) that uses Rituxan, which can find CD20 markers on Follicular Lymphoma cells, to deliver a little shot of radiation directly to the cell. It's a very cool, extremely underused treatment for Follicular Lymphoma, and I'm very happy that it's getting so much play at ASH. The other approved version of RIT, Bexxar, has been effectively discontinued by its manufacturer, so we need some good news about Zevalin to keep the RIT option alive for us. Spectrum highlights seven different presentations at ASH that discuss Zevalin.
Not all of the presentations offer good news for Zevalin, but enough of them do for Spectrum top brag about them. They confirm that Zevalin works well when administered after other treatments when there is miminal remaining disease, extending the effectiveness of the initial treatment; but also that Zevalin works well as an initial treatment in indolent lymphoma, even with bulky disease (larger tumors), which seems to go against some previous studies. However, it seems less effective, and less cost-effective, than Rituxan Maintenance.
ALl of which might explain why there was less spin in the press release: kind of a mixed bag when you look at the overall results.
So I'll provide my own spin (reminding you, of course, that this comes from a Cancer Nerd, and not a medical professional): the less-successful outcomes for Zevalin doe not, and should not, spell disaster for it. If anything, they help us narrow down how and when it can best be used. That's ultimately the point of a trial -- to give us fairly narrow instances for when a treatment is likely to be more successful than another treatment. My hope is that there is enough good news about Zevalin at ASH to keep it out there as an option, maybe even to get people just a little more excited about using it. We already know some circumstances when it is useful, and I think the ASH presentations confirm that. Maybe Spectrum knows that, too, and that's why they bothered putting out a press release in the first place.
I would hate to see Spectrum take the RIT option away completely. That would be stupid stupid.
(I'd normally go all Boston with that and say "wicked smaht," but yesterday I overheard two college students talking about the Honors College at their school, and one of them said, "Yeah, you have to be stupid smart to get in there." I love it. I assume he was using "stupid" as an adverbial intensifier, like "very," or "wicked." I'm going to try to find any excuse to use that phrase all the damn time now.)
Anyway, today is the opening day of the ASH conference, and that means lots of drug companies and universities will be putting out press releases over the next week to tout the results of the research that will be reported at the conference. I saw my first last night, from Spectrum Pharmaceuticals.
I like Spectrum's press release, because it mostly gives information without any spin, which some press releases give. (Of course, there's only so much spin a drug company can give without the FDA getting upset.) But Spectrum provides the session numbers and titles of the presentations that involve their products, and some basic information about the products themselves.
They highlight three treatments that are being discussed at ASH. The first is Folotyn, which is discussed as a treatment for T cell Lymphoma and for Multiple Myeloma. The second is Marqibo, also known as Vincristine Sulfate Liposome, which is already approved for Acute Lymphoblastic Leukemia (ALL), and is here discussed as part of a treatment regiment for DLBCL. I like that one of the presentations is substituting Marqibo for a the NON-Liposomal Vincristine in CHOP, which makes CHOP into CHMP, which is perfrect, because Marqibo sounds like the name of a species of monkey that my son the animal lover would be especially fond of.
Enough monkey jokes: Marqibo is like Oncovin, which is the "O" in CHOP, but it is covered in a fat-like substance that slows down how quickly it is absorbed by the body. The idea is that this may cut down on toxicity, and also allow it to stay in the bloodstream and do its job a little longer. That's what the ASH presentations are getting at.
As you know, I know a little about DLBCL, and much less about T Cell Lymphoma, ALL, and Myeloma, so I won't say anything else about those other Spectrum products. But it's the third one discussed in the press release that is relevant: Zevalin.
Zevalin is a type of RadioImmuno Therapy (RIT) that uses Rituxan, which can find CD20 markers on Follicular Lymphoma cells, to deliver a little shot of radiation directly to the cell. It's a very cool, extremely underused treatment for Follicular Lymphoma, and I'm very happy that it's getting so much play at ASH. The other approved version of RIT, Bexxar, has been effectively discontinued by its manufacturer, so we need some good news about Zevalin to keep the RIT option alive for us. Spectrum highlights seven different presentations at ASH that discuss Zevalin.
Not all of the presentations offer good news for Zevalin, but enough of them do for Spectrum top brag about them. They confirm that Zevalin works well when administered after other treatments when there is miminal remaining disease, extending the effectiveness of the initial treatment; but also that Zevalin works well as an initial treatment in indolent lymphoma, even with bulky disease (larger tumors), which seems to go against some previous studies. However, it seems less effective, and less cost-effective, than Rituxan Maintenance.
ALl of which might explain why there was less spin in the press release: kind of a mixed bag when you look at the overall results.
So I'll provide my own spin (reminding you, of course, that this comes from a Cancer Nerd, and not a medical professional): the less-successful outcomes for Zevalin doe not, and should not, spell disaster for it. If anything, they help us narrow down how and when it can best be used. That's ultimately the point of a trial -- to give us fairly narrow instances for when a treatment is likely to be more successful than another treatment. My hope is that there is enough good news about Zevalin at ASH to keep it out there as an option, maybe even to get people just a little more excited about using it. We already know some circumstances when it is useful, and I think the ASH presentations confirm that. Maybe Spectrum knows that, too, and that's why they bothered putting out a press release in the first place.
I would hate to see Spectrum take the RIT option away completely. That would be stupid stupid.
Thursday, December 5, 2013
ASH: Choosing Wisely
This comes from the American Society of Hematology itself, rather than research presented at their upcoming conference: their list of 5 hematology procedures that should be questioned. I'll say right off that none of them are directly related to Follicular Lymphoma, but it's an important list anyway.
The list was released as part of the Choosing Wisely campaign, sponsored by the ABIM Foundation. The campaign is working with medical organizations like ASH to highlight procedures that are commonly done, but not necessary. The campaign actually has two sets of lists: one for doctors (like the ASH list), and one for patients, with advice on things like when it's necessary to get allergy testing, or have a colonoscopy, or stress tests.
I think the lists are important mainly because they encourage conversation. Often, we have to make decisions as patients when we are not in a state to think rationally. And too often, doctors do things because it's the way they've always been done. The lists encourage us to question ourselves and our doctors, and make sure that whatever decisions we make are the right ones, doing more good than harm.
Now, that said, I think it would be just as dangerous to accept the advice on one of these lists without question as it would to do what a doctor says without questions. And that's the main point here -- ask questions, get information, make good decisions.
As for the ASH list, it offers five "commonly used tests and treatments to question" because they are used improperly. As I said, none deal specifically with Follicular Lymphoma, though one does deal with lymphomas:
"Limit surveillance computed tomography (CT) scans in asymptomatic patients following curative-intent treatment for aggressive lymphoma."
To be clear: these are CT scans after treatment for aggressive lymphomas (say, DLBCL) that have been treated with the intent to cure (with, say, R-CHOP as an initial treatment), when the patient has no other symptoms that would justify a scan. The reasoning behind this suggestion is 1) there is no evidence that CT scans to look for signs of returning cancer do much to increase Overall Survival, and 2) there is some evidence that all that radiation can cause secondary cancers later on.
So where does this leave me? As an asymptomatic Follicular Lymphoma patient, not much. But what it does do is get me thinking: do I need a scan?
I haven't had one in a long time -- coming up on 4 years in the spring. Do I need one? I don't know. I don't have any symptoms -- and goodness knows I look for them all them time. No bumps that are growing. No weird fevers or chills. My blood work is always good. But part of me really wants to know what's going on inside. Rituxan gave me a Partial Response. Is it any worse? Is there an area growing that I should be keeping an eye on?
I bring this up with Dr. R pretty much every time I see him. And I'll bring it up again. And I'm guessing he'll tell me the same thing he tells me every time: "Yeah, maybe. It's been a while. We'll see how things look at the next appointment and decide if we should do one. It might be time." And then he puts me off again. Which is probably what he should do, given my lack of symptoms.
And that's why I value a list like ASH's: it makes me ask questions and start a conversation with my doctor. Even if it's a question that isn't directly about my cancer, it gets me thinking.
The danger, of course, is that our thoughts sometimes get away from us. I've been doing this long enough to get a post-it and write "ask about CT" and stick on the calendar for January when I have my appointment. Five years ago, reading questions about scans might have had me up at night wondering why I wasn't getting one and what I was missing. I don't miss those days, and I feel for those who are going through them now.
But in the end, asking questions -- and getting answers -- is worth a few hours of sleep. Education is key to survival, physical and emotional.
The list was released as part of the Choosing Wisely campaign, sponsored by the ABIM Foundation. The campaign is working with medical organizations like ASH to highlight procedures that are commonly done, but not necessary. The campaign actually has two sets of lists: one for doctors (like the ASH list), and one for patients, with advice on things like when it's necessary to get allergy testing, or have a colonoscopy, or stress tests.
I think the lists are important mainly because they encourage conversation. Often, we have to make decisions as patients when we are not in a state to think rationally. And too often, doctors do things because it's the way they've always been done. The lists encourage us to question ourselves and our doctors, and make sure that whatever decisions we make are the right ones, doing more good than harm.
Now, that said, I think it would be just as dangerous to accept the advice on one of these lists without question as it would to do what a doctor says without questions. And that's the main point here -- ask questions, get information, make good decisions.
As for the ASH list, it offers five "commonly used tests and treatments to question" because they are used improperly. As I said, none deal specifically with Follicular Lymphoma, though one does deal with lymphomas:
"Limit surveillance computed tomography (CT) scans in asymptomatic patients following curative-intent treatment for aggressive lymphoma."
To be clear: these are CT scans after treatment for aggressive lymphomas (say, DLBCL) that have been treated with the intent to cure (with, say, R-CHOP as an initial treatment), when the patient has no other symptoms that would justify a scan. The reasoning behind this suggestion is 1) there is no evidence that CT scans to look for signs of returning cancer do much to increase Overall Survival, and 2) there is some evidence that all that radiation can cause secondary cancers later on.
So where does this leave me? As an asymptomatic Follicular Lymphoma patient, not much. But what it does do is get me thinking: do I need a scan?
I haven't had one in a long time -- coming up on 4 years in the spring. Do I need one? I don't know. I don't have any symptoms -- and goodness knows I look for them all them time. No bumps that are growing. No weird fevers or chills. My blood work is always good. But part of me really wants to know what's going on inside. Rituxan gave me a Partial Response. Is it any worse? Is there an area growing that I should be keeping an eye on?
I bring this up with Dr. R pretty much every time I see him. And I'll bring it up again. And I'm guessing he'll tell me the same thing he tells me every time: "Yeah, maybe. It's been a while. We'll see how things look at the next appointment and decide if we should do one. It might be time." And then he puts me off again. Which is probably what he should do, given my lack of symptoms.
And that's why I value a list like ASH's: it makes me ask questions and start a conversation with my doctor. Even if it's a question that isn't directly about my cancer, it gets me thinking.
The danger, of course, is that our thoughts sometimes get away from us. I've been doing this long enough to get a post-it and write "ask about CT" and stick on the calendar for January when I have my appointment. Five years ago, reading questions about scans might have had me up at night wondering why I wasn't getting one and what I was missing. I don't miss those days, and I feel for those who are going through them now.
But in the end, asking questions -- and getting answers -- is worth a few hours of sleep. Education is key to survival, physical and emotional.
Monday, December 2, 2013
ASH: Follicular Lymphoma and Lifestyle Factors
OK, I'm going to start this one off with a great big warning about being very careful about what you read. The information in this ASH abstract looks really, really good to me, but we're also talking about a relatively small study (123 patients) that is retrospective (looking back at patients who were treated 30 years ago, in some cases), and it deals with statistical analysis of a group (always something to be wary of when considering the impact on your own life).
The abstract is for a paper called "The Influence Of Lifestyle Factors On Tumor-Related Markers and The Microenvironment In Follicular Lymphoma (FL): Novel Interactions and Collective Impact On Survival," and it looks at the correlation between some specific biomarkers (that is, some proteins on the surface of the Follicular Lymphoma cells) and certain lifestyle factors (specifically, Body Mass Index [BMI], diet, and smoking habits). As I said above, the study looked retrospectively as 123 Follicular Lyimphoma patients, and found some fascinating correlations:
Well, I'm writing this while I take a lunch break, pretty thrilled that my non-smoking, fat-butted/high BMI self is eating a clementine. Hooray for Lympho Bob.
What should we read from this?
Probably not quite as much. I'll say it again -- it's a small retrospective study that found some interesting correlations, but I'm guessing that are plenty of carrot-eaters out there who still struggling with their Follicular Lymphoma. Trends do not add up to individual truths. These trends will need a lot more study before they can really be considered worthwhile, and even then, even with a sampling of 10,000 FL patients, things won't necessarily hold true for individuals.
This is probably a good time to remind everyone of how ASH works, and what it all means. The ASH conference is often the first chance that many researchers get to present the results of their research and get a little feedback. At some point, they will need to subject their results to "peer review" -- having other experts in the field look very carefully at the data and determine if it's all as good as it seems. Presenting at ASH is just the first step. Not all of what we see is going to result in something that shows up at our oncologist's office and treatment room. We have to remember that.
For me, looking at ASH abstracts gives me some hope. It gives me something to look forward to. But there's never any promise of success that goes along with it. If things don't work out, that's OK -- I'm happy to move on to the next thing that might give me some hope.
So the takeaway here probably isn't all that startling. Even if we don't have a definite correlation between specific lifestyle factors and Overall Survival for Follicular Lymphoma, we all know that we shouldn't smoke, we should eat more vegetables and fruits, and we should keep our weight down. That probably helps everyone's OS, not just Follicular Lymphoma patients'.
Still, that whole BMI link to Overall Survival is kind of nice, given how much pie I ate over the last few days....
The abstract is for a paper called "The Influence Of Lifestyle Factors On Tumor-Related Markers and The Microenvironment In Follicular Lymphoma (FL): Novel Interactions and Collective Impact On Survival," and it looks at the correlation between some specific biomarkers (that is, some proteins on the surface of the Follicular Lymphoma cells) and certain lifestyle factors (specifically, Body Mass Index [BMI], diet, and smoking habits). As I said above, the study looked retrospectively as 123 Follicular Lyimphoma patients, and found some fascinating correlations:
- Patients with high CD7 biomarker tended to eat lots of fruit, veggies, and starch, especially carotene-rich veggies.
- Smokers tended to have lower CD7 levels.
- More fruit was associated with higher CD10 levels.
- High BMI was associated with higher Overall Survival.
- High CD7 levels were also associated with higher Overall Survival.
- High BMI and high CD7 levels combined were associated with even higher OS.
Well, I'm writing this while I take a lunch break, pretty thrilled that my non-smoking, fat-butted/high BMI self is eating a clementine. Hooray for Lympho Bob.
What should we read from this?
Probably not quite as much. I'll say it again -- it's a small retrospective study that found some interesting correlations, but I'm guessing that are plenty of carrot-eaters out there who still struggling with their Follicular Lymphoma. Trends do not add up to individual truths. These trends will need a lot more study before they can really be considered worthwhile, and even then, even with a sampling of 10,000 FL patients, things won't necessarily hold true for individuals.
This is probably a good time to remind everyone of how ASH works, and what it all means. The ASH conference is often the first chance that many researchers get to present the results of their research and get a little feedback. At some point, they will need to subject their results to "peer review" -- having other experts in the field look very carefully at the data and determine if it's all as good as it seems. Presenting at ASH is just the first step. Not all of what we see is going to result in something that shows up at our oncologist's office and treatment room. We have to remember that.
For me, looking at ASH abstracts gives me some hope. It gives me something to look forward to. But there's never any promise of success that goes along with it. If things don't work out, that's OK -- I'm happy to move on to the next thing that might give me some hope.
So the takeaway here probably isn't all that startling. Even if we don't have a definite correlation between specific lifestyle factors and Overall Survival for Follicular Lymphoma, we all know that we shouldn't smoke, we should eat more vegetables and fruits, and we should keep our weight down. That probably helps everyone's OS, not just Follicular Lymphoma patients'.
Still, that whole BMI link to Overall Survival is kind of nice, given how much pie I ate over the last few days....
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