As you may know (if you read my post yesterday), I am attending (virtually) this year's ASCO conference (from the American Society of Clinical Oncology). There is no face-to-face gathering of thousands of oncologists, listening to presentations about cancer research. And since they waived the registration fee for patient advocates, I get to watch and listen for free.
It's a cool experience so far. I usually look at abstracts (the summaries of the research that is being presented). But people who attend the conference get much more detail than outsiders looking in, the way I usually am.
One fascinating example: that CAR-T presentation that I write about yesterday.
Today, I watched a few live presentations, including one on "Hematologic Malignancies Highlights." For this presentation, three experts looked at different blood cancers, and talked about what they thought were the most interesting presentations in that area. One of them (Dr. Nancy Bartlett of Washington University in St. Louis) looked at lymphoma. I was a little disappointed when the only Follicular Lymphoma research she looked at was the same one that got covered yesterday ("Interim analysis of ZUMA-5: A phase II study of axicabtagene ciloleucel (axi-cel) in patients (pts) with relapsed/refractory indolent non-Hodgkin lymphoma (R/R iNHL)."
But, because I have access to more detail, like Dr. Bartlett's analysis, I got some interesting perspective -- one that was not quite as optimistic as the one I had heard yesterday.
The research looks at the ZUMA-5 trial, which is looking at a CAR-T treatment for Relapsed/Refractory FL patients (those whose last treatment didn't work, or that stopped working). It's a phase 2 study, with just under 100 patients involved. The numbers are very good -- the Overall Response for FL patients in the study was 95%, with a Complete Response Rate of 80%. (There were a small number of patients with Marginal Zone Lymphoma, another indolent type, but I'm ignoring that for now. They didn't do quite as well as the FL patients.)
The Median Progression Free Survival for the FL patients was just under 2 years (much less for the MZL patients). That's a pretty good PFS, but looking at the whole group, there doesn't seem to be as good of a long-term PFS as there is for some other treatments, especially after 18 months. In other words, it does really well at first, but it doesn't last long for lots of patients. (That seems true for CAR-T in other studies, too.) She called the duration of response "somewhat disappointing."
Side effects were "as expected" -- Cytokine Release Syndrome (a kind of flu-like reaction to some treatments when the body reacts to a heavy immune response), and some nerve issues.
But those two issues are important, says Dr. Barrett. The duration of response seems much better when CAR-T is used for more aggressive lymphomas like DLBCL. She hopes this improves as the patients in this study are examined longer. And while the side effects were expected, they still potentially problematic.
The question she asks: Are the toxicity (the side effects) and the expense (CAR-T can cost as much as $400,000 per patient) worth it? Longer follow-up will help answer that question. But with so many other newer treatments being approved (like Lenalidomide and some inhibitors) and lots of others that look promising in trials (like bispecifics and some newer antibodies), it's hard to know where CAR-T will fit for people with Relapsed/Refractory FL. She thinks the only way to justify the toxicity and cost is to show that CAR-T produces a better Overall Survival (not just PFS), and maybe shows that it cures FL.
That's a pretty high bar to cross. But it's a pretty realistic assessment. If something like a monoclonal antibody keeps a patient alive for the same amount of time, has the same (or even less toxic) side effects, but costs 20% of the cost of CAR-T, then why go with CAR-T?
Two important things here:
First, it's important to remember that this is an interim (not a final) report on this trial. Another report at ASH in December, or ASCO next year, might show some very different information -- maybe better, maybe worse. These things take time.
Second, I'm enjoying the detailed information that I'm getting as an official participant. I've been to conferences before for my own job (just not cancer conferences), so I know they can be very exciting, but also very exhausting. This is good -- I can learn information without having to fly or sleep in an uncomfortable hotel bed for a few nights. No one will look down at me for watching a presentation while drinking whisky, like they would if I was there in person.
There's lots more good to stuff to report on. It's going to take me a while to sort through it and write about it, so keep looking out for more in the next few weeks.
Saturday, May 30, 2020
Friday, May 29, 2020
ASCO is Here! (With CAR-T Research)
Today is the first day of the ASCO conference. It's the annual gathering of the American Society of Clinical Oncology. Typically, the conference brings thousands of cancer doctors, researchers, nurses, other health professionals, and patients and survivors into one big building so they can all learn about the latest in cancer.
This year, the conference is virtual -- all of it will be online. That's good news for me. ASCO very kindly made it free for patients advocates to attend this year (doctors have to pay a few hundred dollars), and they changed the definition of "advocate" to include people who don't work for cancer organizations (I had a small role in making that change happen). All of this means I can be a part of the conference. Normally, I couldn't afford the flight and hotel (this year's it's in Chicago). I always have access to abstracts, but this year I'll also have access to some other things like seminars and webcasts -- live events that only registered folks get to experience.
If you've been reading for a while, you know that, for me, this is Cancer Nerd Heaven.
My plan is to report what I find, as I usually do with ASCO. I'm hoping the virtual stuff will give me more to report.
I'm guessing that, as I usually do, I'll be reporting on this for a couple of weeks, even though the conference is officially just a few days.
My first report is on a podcast. ASCO News Daily, which gives reports about the conference every day, asked Dr. John Sweetenham, a lymphoma expert, to talk about some of the more important research about blood cancers that will be presented at ASCO. (You should be able to hear his whole 15 minute podcast here.)
The first one he talked about was about Follicular Lymphoma: "Interim analysis of ZUMA-5: A phase II study of axicabtagene ciloleucel (axi-cel) in patients (pts) with relapsed/refractory indolent non-Hodgkin lymphoma (R/R iNHL)."
The presentation focuses on the ZUMA-5 trial. There are a bunch of ZUMA trials (at least 5!), and they all focus on CAR-T. (If you need a refresher on what CAR-T is, look at what I said about it during last year's ASCO conference.)
CAR-T is approved for some types of lymphoma, including aggressive types like Transformed FL. The ZUMA-5 trial looks at less aggressive type of FL (which is what most of us have). It specifically looks at one type of CAR-T called Axi-cel, and the effects on FL patients who are relapsed or refractory (that is, their last treatment stopped working, or didn't work at all). The patients in the study also had at least two previous treatments.
The study had 94 patients with indolent (slow-growing) lymphoma, 80 of them with Follicular Lymphoma.
Results are great. After about a year of follow-up, 94% of patients had a Response, with 73% having a Complete Response. Of the FL patients, the response was even better -- 95% Overall Response, with 80% getting a Complete Response.
This is being reported at about the same time the FDA has begun looking at another CAR-T, Kymriah, for Relapsed/Refractory FL patients. That's good news for those of us who have had treatments before. There are lots of barriers to this being a common treatment -- it's very expensive, since each individual patient gets a treatment that is created specifically for them -- but the cost might come down over time.
And since this was the first research that a lymphoma mentioned in his blood cancer list, I think we can say this one is a big deal to cancer experts. I will continue to keep an eye out for others that experts seem excited about, and I will share the ones that I find interesting, too (even if the experts aren't as excited about them).
Lots to be hopeful about at this time of year.
This year, the conference is virtual -- all of it will be online. That's good news for me. ASCO very kindly made it free for patients advocates to attend this year (doctors have to pay a few hundred dollars), and they changed the definition of "advocate" to include people who don't work for cancer organizations (I had a small role in making that change happen). All of this means I can be a part of the conference. Normally, I couldn't afford the flight and hotel (this year's it's in Chicago). I always have access to abstracts, but this year I'll also have access to some other things like seminars and webcasts -- live events that only registered folks get to experience.
If you've been reading for a while, you know that, for me, this is Cancer Nerd Heaven.
My plan is to report what I find, as I usually do with ASCO. I'm hoping the virtual stuff will give me more to report.
I'm guessing that, as I usually do, I'll be reporting on this for a couple of weeks, even though the conference is officially just a few days.
My first report is on a podcast. ASCO News Daily, which gives reports about the conference every day, asked Dr. John Sweetenham, a lymphoma expert, to talk about some of the more important research about blood cancers that will be presented at ASCO. (You should be able to hear his whole 15 minute podcast here.)
The first one he talked about was about Follicular Lymphoma: "Interim analysis of ZUMA-5: A phase II study of axicabtagene ciloleucel (axi-cel) in patients (pts) with relapsed/refractory indolent non-Hodgkin lymphoma (R/R iNHL)."
The presentation focuses on the ZUMA-5 trial. There are a bunch of ZUMA trials (at least 5!), and they all focus on CAR-T. (If you need a refresher on what CAR-T is, look at what I said about it during last year's ASCO conference.)
CAR-T is approved for some types of lymphoma, including aggressive types like Transformed FL. The ZUMA-5 trial looks at less aggressive type of FL (which is what most of us have). It specifically looks at one type of CAR-T called Axi-cel, and the effects on FL patients who are relapsed or refractory (that is, their last treatment stopped working, or didn't work at all). The patients in the study also had at least two previous treatments.
The study had 94 patients with indolent (slow-growing) lymphoma, 80 of them with Follicular Lymphoma.
Results are great. After about a year of follow-up, 94% of patients had a Response, with 73% having a Complete Response. Of the FL patients, the response was even better -- 95% Overall Response, with 80% getting a Complete Response.
This is being reported at about the same time the FDA has begun looking at another CAR-T, Kymriah, for Relapsed/Refractory FL patients. That's good news for those of us who have had treatments before. There are lots of barriers to this being a common treatment -- it's very expensive, since each individual patient gets a treatment that is created specifically for them -- but the cost might come down over time.
And since this was the first research that a lymphoma mentioned in his blood cancer list, I think we can say this one is a big deal to cancer experts. I will continue to keep an eye out for others that experts seem excited about, and I will share the ones that I find interesting, too (even if the experts aren't as excited about them).
Lots to be hopeful about at this time of year.
Friday, May 22, 2020
Are FL Patients Being Cured? (And Should That Be a Goal?)
I've been watching a series of videos published earlier this month from 2019 Lymphoma and Myeloma conference tat took place last November in New York. (The videos are new, though the content is almost 6 months old.)
One video has intrigued me. It has the kind of generic title "Panel Discussion on Follicular Lymphoma," though the video itself seems to be from a symposium at the comference called "Moving Forward in the Treatment of Relapsed/Refractory Follicular Lymphoma." The participants aren't listed in the video description, but there is a link to the program that lists them as Drs. Carla Casulo, Bruce Cheson, Richard I. Fisher, Thomas M. Habermann, Peter Martin, and Craig S. Sauter. Kind of a Lymphoma Rock Star panel.
Because this short video (8 minutes) is part of a larger event, it isn't as focused as some others I have seen. It starts with a question from the audience, but after a couple of minutes, the moderator moves on to a couple of things. First, he asks the audience (which is made up of oncologists) to raise their hands if they think chemotherapy has a role in the treatment of Follicular Lymphoma. (To be clear: he means traditional chemotherapy -- CHOP, CVP, Bendmustine.) The question is even asked because so many non-chemo treatments have become available in the last few years.
Interestingly, most of them thought there was still a place for chemo in Follicular Lymphoma (something that upset Dr. Cheson). [For what it's worth, this non-doctor Cancer Nerd thinks so, too. Maybe some day we'll live in a world without chemo, but it still seems pretty useful right now for aggressive FL.]
The the panel turns to a different question: If we hope to cure FL, should we stop encouraging watching and waiting?
It's an interesting question, and maybe a strange one to ask (linking cure and watch and wait), but I guess the basic idea is, we can't cure anyone if we don't treat them.
The answers were also interesting. One panelist asked how we defined "cure," and pointed out that the assumption behind the question is that treating early is more likely to lad to a cure (and, at the same time, holding off on treatment means a cure is less likely). He points out that the assumption is wrong -- many people have probably had FL for years before diagnosis, so it's impossible to tel what "early" treatment is. He also thinks seeking a cure might not even be the best strategy right now.
Another panelist though that thinking about "cure" that way was "limiting our thinking." As he says, 5 years after diagnosis, 80% of people with FL are still alive. And there is a 19 year median Overall Survival for a group of patients who are usually diagnosed in their mid-60's, then many people will die of something else -- meaning we can probably consider them "cured" of their FL.
[Before I move on, let me emphasize that: this lymphoma expert says we probably have a median Overall Survival of about 19 years for Follicular Lymphoma patients. When I was diagnosed 12 years ago, it was considered 8-10 years. Just take a minute to enjoy that statistic. He doesn't give a source for it, but it's in line with a lot of other things I have read.]
Another points out that early treatment does not mean longer OS. The benefit of treatment seems to come at relapse, not with initial treatment. Their first treatment, or watching and waiting, seems to have the same Overall Survival. About 20% of patients didn't need treatment even at 10 years.
Another panelist thinks the most important thing to do in making a difference is to focus on EFS24 and transformed patients. Until they can be identified and treated successfully, then we really can't talk about "cure."
Finally, the last panelist point out that a presentation at ASH last year showed that DNA tests found that as mnay as 80% of ling-term patients (those around for 20 years after diagnosis) found no trace of FL DNA, and so maybe this could be a tool to determine whether or not they could be considered "cured."
Lots to unpack there.
If this panel is representative of the field, then there are some lymphoma researchers who think we aren't ready to even think about whether or not Follicular Lymphoma can be cured, or if it's even a good goal for FL as a whole.
Others think there are some FL patients who have been cured, but we aren't ready to say the disease is "curable" for everyone.
And others think there is a significant enough number of FL patients who have lived long enough, waiting for the FL to return, and never seeing that day come, that maybe we can consider them as being cured.
Personally (again, for what it's worth from a non-doctor), I'm a little hesitant to think that a cure is a label we should be using. Until we find a treatment (or more than one treatment) that provides a very long-term remission, I don't think I can psychologically allow myself to believe it won't ever come back. And I say this as someone who hasn't needed treatment in 10 years.
But I am very happy to look again at that 19 year Overall Survival, and to think about my own experience, and the experience of many, many others, and be happy to know that we are in a place where there are lots of treatments available to us, and lots more being developed, that offer the chance to live longer lives than people who came before us. Whether the future brings us treatments that "cure" us, or that allow us to live long lives with a good quality of life, I'm happy either way.
And I think we're moving ahead with that, a little more al the time.
One video has intrigued me. It has the kind of generic title "Panel Discussion on Follicular Lymphoma," though the video itself seems to be from a symposium at the comference called "Moving Forward in the Treatment of Relapsed/Refractory Follicular Lymphoma." The participants aren't listed in the video description, but there is a link to the program that lists them as Drs. Carla Casulo, Bruce Cheson, Richard I. Fisher, Thomas M. Habermann, Peter Martin, and Craig S. Sauter. Kind of a Lymphoma Rock Star panel.
Because this short video (8 minutes) is part of a larger event, it isn't as focused as some others I have seen. It starts with a question from the audience, but after a couple of minutes, the moderator moves on to a couple of things. First, he asks the audience (which is made up of oncologists) to raise their hands if they think chemotherapy has a role in the treatment of Follicular Lymphoma. (To be clear: he means traditional chemotherapy -- CHOP, CVP, Bendmustine.) The question is even asked because so many non-chemo treatments have become available in the last few years.
Interestingly, most of them thought there was still a place for chemo in Follicular Lymphoma (something that upset Dr. Cheson). [For what it's worth, this non-doctor Cancer Nerd thinks so, too. Maybe some day we'll live in a world without chemo, but it still seems pretty useful right now for aggressive FL.]
The the panel turns to a different question: If we hope to cure FL, should we stop encouraging watching and waiting?
It's an interesting question, and maybe a strange one to ask (linking cure and watch and wait), but I guess the basic idea is, we can't cure anyone if we don't treat them.
The answers were also interesting. One panelist asked how we defined "cure," and pointed out that the assumption behind the question is that treating early is more likely to lad to a cure (and, at the same time, holding off on treatment means a cure is less likely). He points out that the assumption is wrong -- many people have probably had FL for years before diagnosis, so it's impossible to tel what "early" treatment is. He also thinks seeking a cure might not even be the best strategy right now.
Another panelist though that thinking about "cure" that way was "limiting our thinking." As he says, 5 years after diagnosis, 80% of people with FL are still alive. And there is a 19 year median Overall Survival for a group of patients who are usually diagnosed in their mid-60's, then many people will die of something else -- meaning we can probably consider them "cured" of their FL.
[Before I move on, let me emphasize that: this lymphoma expert says we probably have a median Overall Survival of about 19 years for Follicular Lymphoma patients. When I was diagnosed 12 years ago, it was considered 8-10 years. Just take a minute to enjoy that statistic. He doesn't give a source for it, but it's in line with a lot of other things I have read.]
Another points out that early treatment does not mean longer OS. The benefit of treatment seems to come at relapse, not with initial treatment. Their first treatment, or watching and waiting, seems to have the same Overall Survival. About 20% of patients didn't need treatment even at 10 years.
Another panelist thinks the most important thing to do in making a difference is to focus on EFS24 and transformed patients. Until they can be identified and treated successfully, then we really can't talk about "cure."
Finally, the last panelist point out that a presentation at ASH last year showed that DNA tests found that as mnay as 80% of ling-term patients (those around for 20 years after diagnosis) found no trace of FL DNA, and so maybe this could be a tool to determine whether or not they could be considered "cured."
Lots to unpack there.
If this panel is representative of the field, then there are some lymphoma researchers who think we aren't ready to even think about whether or not Follicular Lymphoma can be cured, or if it's even a good goal for FL as a whole.
Others think there are some FL patients who have been cured, but we aren't ready to say the disease is "curable" for everyone.
And others think there is a significant enough number of FL patients who have lived long enough, waiting for the FL to return, and never seeing that day come, that maybe we can consider them as being cured.
Personally (again, for what it's worth from a non-doctor), I'm a little hesitant to think that a cure is a label we should be using. Until we find a treatment (or more than one treatment) that provides a very long-term remission, I don't think I can psychologically allow myself to believe it won't ever come back. And I say this as someone who hasn't needed treatment in 10 years.
But I am very happy to look again at that 19 year Overall Survival, and to think about my own experience, and the experience of many, many others, and be happy to know that we are in a place where there are lots of treatments available to us, and lots more being developed, that offer the chance to live longer lives than people who came before us. Whether the future brings us treatments that "cure" us, or that allow us to live long lives with a good quality of life, I'm happy either way.
And I think we're moving ahead with that, a little more al the time.
Monday, May 18, 2020
A Little Help From My Friends
Well, the first-ever Lympho Bob Virtual Zoom Chat and Lymphoma Discussion Group (also known as LBVZCLDG, pronounced "Libvezcledig") met earlier today. We spent an hour together in a video chat. It was a really nice, easy time, sharing a little bit about ourselves and comparing our experiences. I think we all agreed that we'd like to do it again sometime. Our first item next time: coming up with a better name than "Libvezcledig" (which I probably should have run past the others in the group anyway).
It really was nice to be able to put faces to the names of some folks I have seen in the comments, or have exchanged emails with. As I have said before, I have always valued community as a way make our lives as cancer patients just a little bit easier. And at a time when so many people are having to isolate themselves, finding a way to connect with others is important -- especially with others who have been through some of the same difficulties as you.
After we met, I went to the abstracts for the ASCO meeting (coming up in a few weeks). It's the first chance I've had to take a look at some the presentations coming up. I skipped the Follicular Lymphoma abstracts (for now), and went to the "Psychosocial and Communication Research" group. I was curious if there was any research this year on support groups, or peer-to-peer support, or just anything about patients helping other patients.
There really wasn't much of anything, unfortunately. About the closest I could find was a presentation called "With a little help from my friends: A multi-disciplinary approach to cancer survivorship." It wasn't what I was looking for, exactly, but it did present some interesting research. The Yale Cancer Center has a "multi-disciplinary adult survivorship clinic.
The clinic is run by an oncologist, and after treatment is over, patients meet for 30 minutes with 4 different specialists who help with their lomg-term survival. There is an advance practice practitioner (like an Advanced Practical Nurse or Physicican's Assitant) to look at their medical needs; a social worker to help with emotional needs; a dietitian to help with nutrition; and a physical therapist to help with physical issues and encourage appropriate exercise. They meet again after 2 or 3 months to see how they are doing and make any changes necessary to help with their long-term medical, physical, and emotional needs.
They found that many patients who went through the program had a decrease in distress and in fatigue -- signs that their physical and emotional health was improved by the program.
I keep going back to that title -- "a little help from my friends" -- named for the Beatles song, of course.
Interestingly, when I did a quick YouTube search for a link to that song, an ad for St. Jude's Cancer Hospital came up. St. Jude's is a hospital for kids with cancer, and they receive enough donations that families don't have to pay any bills.
It's all connected, isn't it?
We don't get through this experience without the help of others -- our "friends." Sometimes those are health professionals. Sometimes it's strangers who might help with things like bills.
Other times, it's other patients, who share experiences and help us understand that others have been through the same thing, and that things will be OK.
Last week, someone posted a question to one of the online lymphoma groups that I'm a part of. I forget the exact question that the person had, but it was something along the lines of, "What's the longest any of you have gone without treatment after their first treatment?" A bunch of people gave their response -- 6 months, 2 years, 20 years. And then someone responded saying, basically, it's kind of a useless question. Everyone has different circumstances, different first treatments, different health issues, different variations of FL. The answers won't mean anything.
That's true, but it's not really the point, is it?
No one asks a question thinking someone is going to tell them exactly how long they will be in remission. They ask because they want to know the possibility. They want that little bit of hope that comes from hearing someone else's experience, even if it isn't exactly their own.
I felt that way today, listening to other patients' stories. All a little bit different. But everyone has turned out OK. That's the wonderful part of talking to other patients.It's about sharing their small victories and hoping you'll have the same. It's about that little spark of
I hope all of you find someone to share with -- a Facebook group or Web Magic group, or a support group that meets face-to-face at the oncologist or hospital you go to.
Or meeting in a virtual group like "Libvezcledig" (we really need to talk about a better name). One where you can get a little help from your friends.
Take care.
It really was nice to be able to put faces to the names of some folks I have seen in the comments, or have exchanged emails with. As I have said before, I have always valued community as a way make our lives as cancer patients just a little bit easier. And at a time when so many people are having to isolate themselves, finding a way to connect with others is important -- especially with others who have been through some of the same difficulties as you.
After we met, I went to the abstracts for the ASCO meeting (coming up in a few weeks). It's the first chance I've had to take a look at some the presentations coming up. I skipped the Follicular Lymphoma abstracts (for now), and went to the "Psychosocial and Communication Research" group. I was curious if there was any research this year on support groups, or peer-to-peer support, or just anything about patients helping other patients.
There really wasn't much of anything, unfortunately. About the closest I could find was a presentation called "With a little help from my friends: A multi-disciplinary approach to cancer survivorship." It wasn't what I was looking for, exactly, but it did present some interesting research. The Yale Cancer Center has a "multi-disciplinary adult survivorship clinic.
The clinic is run by an oncologist, and after treatment is over, patients meet for 30 minutes with 4 different specialists who help with their lomg-term survival. There is an advance practice practitioner (like an Advanced Practical Nurse or Physicican's Assitant) to look at their medical needs; a social worker to help with emotional needs; a dietitian to help with nutrition; and a physical therapist to help with physical issues and encourage appropriate exercise. They meet again after 2 or 3 months to see how they are doing and make any changes necessary to help with their long-term medical, physical, and emotional needs.
They found that many patients who went through the program had a decrease in distress and in fatigue -- signs that their physical and emotional health was improved by the program.
I keep going back to that title -- "a little help from my friends" -- named for the Beatles song, of course.
Interestingly, when I did a quick YouTube search for a link to that song, an ad for St. Jude's Cancer Hospital came up. St. Jude's is a hospital for kids with cancer, and they receive enough donations that families don't have to pay any bills.
It's all connected, isn't it?
We don't get through this experience without the help of others -- our "friends." Sometimes those are health professionals. Sometimes it's strangers who might help with things like bills.
Other times, it's other patients, who share experiences and help us understand that others have been through the same thing, and that things will be OK.
Last week, someone posted a question to one of the online lymphoma groups that I'm a part of. I forget the exact question that the person had, but it was something along the lines of, "What's the longest any of you have gone without treatment after their first treatment?" A bunch of people gave their response -- 6 months, 2 years, 20 years. And then someone responded saying, basically, it's kind of a useless question. Everyone has different circumstances, different first treatments, different health issues, different variations of FL. The answers won't mean anything.
That's true, but it's not really the point, is it?
No one asks a question thinking someone is going to tell them exactly how long they will be in remission. They ask because they want to know the possibility. They want that little bit of hope that comes from hearing someone else's experience, even if it isn't exactly their own.
I felt that way today, listening to other patients' stories. All a little bit different. But everyone has turned out OK. That's the wonderful part of talking to other patients.It's about sharing their small victories and hoping you'll have the same. It's about that little spark of
I hope all of you find someone to share with -- a Facebook group or Web Magic group, or a support group that meets face-to-face at the oncologist or hospital you go to.
Or meeting in a virtual group like "Libvezcledig" (we really need to talk about a better name). One where you can get a little help from your friends.
Take care.
Wednesday, May 13, 2020
Some Follicular Lymphoma Updates
There have been a bunch of little bits of Follicular Lymphoma news that have come to me in the last week or so. I'm not sure they are worth having their own full post, so I'm going to list them here in shorter form. They're still worth knowing about.
First, a couple of personal things:
The ASCO conference, which usually happens in late May/early June, will be entirely online this year. (ASCO is the American Society of Clinical Oncologists, and their conference is one of those places where researchers talk about their work. Usually a few good FL presentations every year.) The online-only conference is good news for me, in some ways, since I can't ever travel to ASCO anyway. This year, the conference organizers made registration for Patient Advocates free, so I can "go" to the ASCO conference this year! I hope I'll have lots of interesting research to report on. Look for it in a couple of weeks.
Second, the video conference that I had planned has slowly come together. It will happen next Monday, May 18, at 12:00 noon Eastern Standard Time (9:00am Pacific Standard, 4:00pm Greenwhich Mean). If you're interested, email me. As I said before, I don't have any real agenda for this. It's a way of connecting with other people with Follicular Lymphoma in ways we don't usually get to do. Connections are especially important these days. Let me know if you're interested.
Now on to the FL news:
And I'm sure I'll have more good stuff for you at the end of month, when ASCO opens up and I can see what's going on.
First, a couple of personal things:
The ASCO conference, which usually happens in late May/early June, will be entirely online this year. (ASCO is the American Society of Clinical Oncologists, and their conference is one of those places where researchers talk about their work. Usually a few good FL presentations every year.) The online-only conference is good news for me, in some ways, since I can't ever travel to ASCO anyway. This year, the conference organizers made registration for Patient Advocates free, so I can "go" to the ASCO conference this year! I hope I'll have lots of interesting research to report on. Look for it in a couple of weeks.
Second, the video conference that I had planned has slowly come together. It will happen next Monday, May 18, at 12:00 noon Eastern Standard Time (9:00am Pacific Standard, 4:00pm Greenwhich Mean). If you're interested, email me. As I said before, I don't have any real agenda for this. It's a way of connecting with other people with Follicular Lymphoma in ways we don't usually get to do. Connections are especially important these days. Let me know if you're interested.
Now on to the FL news:
- NICE (The National Institute for Health and Care Excellence) in the UK has recommended that the NHS fund the use of Obinutuzumab + Bendamustine for FL. I don't know the UK's health system at all (I barely undertsand my own country's), but I'm guessing this means greater access to an effective treatment for more FL patients.
- The inhibitor Umbralisib received Orphan Drug status from the FDA for some FL patients. Umbralisib is a dual inhibitor of PI3 kinase-delta and CK1-epsilon proteins, both of which are necessary for cancer cells to grow. "Orphan status" is a special designation that can be given to treatments that will help fewer than 200,000 patients, making it harder for them to make a profit (which means there is less incentive for a company to develop them). The status gives them that incentive.
- The FDA announced it is adding 3 months to its review of Liso-cel, a CAR-T treatment that might be approved for some aggressive lymphomas, including grade 3b Follicular Lymphoma
And I'm sure I'll have more good stuff for you at the end of month, when ASCO opens up and I can see what's going on.
Friday, May 8, 2020
Improved Lymphoma Survival Over 20 Years
Here's another article I'm kind of catching up on. It was published about 4 weeks ago in the journal Cancer Medicine, and it's called "Improving Survival of 3760 Patients with Lymphoma: Experience of an Academic Center Over Two Decades."
It's pretty interesting for what it doesn't say, as much as for what it does say.
The article looks at lymphoma survival rates over 20 years for patients in one hospital in China. That's a whole bunch of different types of lymphoma, including Follicular Lymphoma. And it looks at patients in a single hospital. So it's kind of really narrow and really broad at the same time. The kind of study that has so many limitations that it's hard to some up with any lessons from it.
But we'll try anyway.
The hospital is Beijing University Cancer Hospital and Institute. They looked back at the records of 3760 patients who were diagnosed with some type of lymphoma between 1996 and 2015. Then they divided the patients into four groups, depending on when they were diagnosed: 1996‐2000, 2001‐2005, 2006‐2010, and 2010‐2015. Then they looked at the 5 year and 10 year Overall Survival rates for each of those groups.
They found that the, for all 3760 patients, the 5 year survival rate was 62%, and the 10 year OS was 52%. Remember, that's for ALL lymphomas -- indolent ones like FL, but also aggressive ones, and for patients of ALL ages, from 20 year olds to 90 year olds.
When they looked at individual lymphomas, they found that the 5 year Overall Survival was highest for Follicular Lymphoma -- 77.8%. That's great news for us!
Just as important, they found that the 5 year OS went up over time. The 5 year OD for patients with B Cell Lymphomas (including FL) was 49% for the group diagnosed from 1996-2000, but went up to 65% for the group diagnosed from 2011-2015.
For FL specifically, the 5 year OS went up, from 42.9% for 1996-2000, to 77.6% for 2011-2015. Once again, that's excellent news for us!
But, as I said, there are limitations to this study -- things that make it hard for us to learn any big lessons from it. It was, after all, a look at patients from just one hospital, and such a small, focused group can have all kinds of issues that influence the numbers that we see. It could be, for example, that a large number of the patients worked in a particular industry (like coal, or chemicals) that could have shortened their life spans in ways that had nothing to do with the lymphoma. In fact, the researchers here say that some of the factors they think helped cause the improvement were things like an increase in the number of doctors and hospital beds in China over 20 years, as well as changes that made it easier for people to afford treatment.
Still, some other things do fit a larger pattern. Rituxan was approved (in the United States, anyway) in 1997, and, as the article points out, in 2000 in China. Overall Survival rates for FL climbed steadily after that in both countries. Rituxan has a way of making some other treatments even better (which is why it is often included in combinations -- Bendamustine + Rituxan, R-Squared, etc.).
Overall Survival for Follicular is improving. When I was diagnosed 12 years ago, I remember reading that the OS fr FL was 8-10 years. These days it's probably closer to 20 years. And I say "probably" because there haven't been many recent studies to confirm that. There's a good reason: OS is a measure of the median, the middle point in a list. So the median survival rate says half of the people in a study have lived less than that number and half have lived more. It's been hard to measure a median OS because not enough people in those studies have died for them to calculate the number. So 18-20 years in their best guess.
(This is a good time to remind you that median Overall Survival says nothing about you as an individual. Read what I wrote here to remind you of what OS means.)
So what can this article tell us? In some ways, not much, other than what it can tell us about a bunch of patients over 20 years in one hospital in China.
But in other ways, it confirms a pattern -- people diagnosed with Follicular Lymphoma are living longer than they used to, for lots of reasons. And I think l there is good reason to think the pattern will continue -- more and better treatments in the future (especially if people are willing to be part of clinical trials), and more reasons for us to be hopeful.
It's pretty interesting for what it doesn't say, as much as for what it does say.
The article looks at lymphoma survival rates over 20 years for patients in one hospital in China. That's a whole bunch of different types of lymphoma, including Follicular Lymphoma. And it looks at patients in a single hospital. So it's kind of really narrow and really broad at the same time. The kind of study that has so many limitations that it's hard to some up with any lessons from it.
But we'll try anyway.
The hospital is Beijing University Cancer Hospital and Institute. They looked back at the records of 3760 patients who were diagnosed with some type of lymphoma between 1996 and 2015. Then they divided the patients into four groups, depending on when they were diagnosed: 1996‐2000, 2001‐2005, 2006‐2010, and 2010‐2015. Then they looked at the 5 year and 10 year Overall Survival rates for each of those groups.
They found that the, for all 3760 patients, the 5 year survival rate was 62%, and the 10 year OS was 52%. Remember, that's for ALL lymphomas -- indolent ones like FL, but also aggressive ones, and for patients of ALL ages, from 20 year olds to 90 year olds.
When they looked at individual lymphomas, they found that the 5 year Overall Survival was highest for Follicular Lymphoma -- 77.8%. That's great news for us!
Just as important, they found that the 5 year OS went up over time. The 5 year OD for patients with B Cell Lymphomas (including FL) was 49% for the group diagnosed from 1996-2000, but went up to 65% for the group diagnosed from 2011-2015.
For FL specifically, the 5 year OS went up, from 42.9% for 1996-2000, to 77.6% for 2011-2015. Once again, that's excellent news for us!
But, as I said, there are limitations to this study -- things that make it hard for us to learn any big lessons from it. It was, after all, a look at patients from just one hospital, and such a small, focused group can have all kinds of issues that influence the numbers that we see. It could be, for example, that a large number of the patients worked in a particular industry (like coal, or chemicals) that could have shortened their life spans in ways that had nothing to do with the lymphoma. In fact, the researchers here say that some of the factors they think helped cause the improvement were things like an increase in the number of doctors and hospital beds in China over 20 years, as well as changes that made it easier for people to afford treatment.
Still, some other things do fit a larger pattern. Rituxan was approved (in the United States, anyway) in 1997, and, as the article points out, in 2000 in China. Overall Survival rates for FL climbed steadily after that in both countries. Rituxan has a way of making some other treatments even better (which is why it is often included in combinations -- Bendamustine + Rituxan, R-Squared, etc.).
Overall Survival for Follicular is improving. When I was diagnosed 12 years ago, I remember reading that the OS fr FL was 8-10 years. These days it's probably closer to 20 years. And I say "probably" because there haven't been many recent studies to confirm that. There's a good reason: OS is a measure of the median, the middle point in a list. So the median survival rate says half of the people in a study have lived less than that number and half have lived more. It's been hard to measure a median OS because not enough people in those studies have died for them to calculate the number. So 18-20 years in their best guess.
(This is a good time to remind you that median Overall Survival says nothing about you as an individual. Read what I wrote here to remind you of what OS means.)
So what can this article tell us? In some ways, not much, other than what it can tell us about a bunch of patients over 20 years in one hospital in China.
But in other ways, it confirms a pattern -- people diagnosed with Follicular Lymphoma are living longer than they used to, for lots of reasons. And I think l there is good reason to think the pattern will continue -- more and better treatments in the future (especially if people are willing to be part of clinical trials), and more reasons for us to be hopeful.
Monday, May 4, 2020
FDA Designation for Kymriah CAR-T
I'm catching up on this:
A couple of weeks ago, the FDA granted Regenerative Medicine Advanced Therapy (RMAT) designation for Kymriah (also known as tisagenlecleucel), a type of CAR-T therapy. This would be the first CAR-T for Relapsed or Refractory Follicular Lymphoma, if it is approved.
Let's break all of that down.
First, as most of you probably know, CAR-T stands for Chimeric Antigen Receptor (CAR) T-cell therapy. T cells are a kind of immune cell that do an excellent job of attacking invaders in the body. Cancer cells, however, are not invaders; they are our own cells that have been messed up so they don't know how to die like a normal cell. So T cells leave them alone. With CAR-T treatments, some of a patient's T cells are removed, taken to a lab so they can be changed to recognize cancer cells, and then put back into the patient, so they attack the cancer cells. Every treatment is made individually for a specific patient, so it's kind of expensive. Early CAR-T treatments work really well for some patients, pretty well for others, and not at all for some. But it shows huge promise.
(If you want to learn more about CAR-T, go to CAR-T and Follicular Non-Hodgkin's Lymphoma, a blog run by a CAR-T patient and a CAR-T caregiver. Good stuff.)
Right now, there are two CAR-T treatments that have received any kind of FDA approvals. The first is called Yescarta (also known as axicabtagene ciloleucel). It has been approved for some aggressive B cell lymphomas, including Transformed Follicular Lymphoma.
The second is called Kymriah. It has been approved for certain aggressive lymphomas and leukemias. But not Follicular Lymphoma.
The makers of Kymriah have applied for FDA approval, based on a Stage II clinical trial called ELARA. The FDA has granted a particular type of designation called Regenerative Medicine Advanced Therapy, or RMAT. This basically means that it is a type of therapy that is created from cells (like T cells), changes cells, or changes genes within cells. It was created to recognize that something like CAR-T is different from other types of treatments like traditional chemotherapy. the designation is only a few years old, but over 40 treatments have applied for it, which says something about where medicine is heading.
One last thing -- "Relapsed or Refractory" means the disease has stopped responding to the last treatment it received, or the last treatment just didn't work at all. This, to me, is the most important part of this approval. It means that anyone who has received treatment for Follicular Lymphoma would potentially be eligible to receive this CAR-T treatment, if it is approved. Right now, CAR-T is only available (outside of a clinical trial) to patients whose FL has transformed into a more aggressive lymphoma.
Now, a word of caution here. When results of CAR-T trials get announced, I see lots of people in online groups who say "I want this treatment! It looks great!" And they are right -- it does look great.
But it is expensive (roughly $400,000, from the numbers I have seen), since it needs to be created for each individual who gets it. It also can have some pretty rough side effects for some patients (though doctors have gotten better about anticipating them). And early trials found long-lasting effects for about 1/3 of patients, short-term effects (less than a year) for about 1/3, and no effects for the last 1/3. Those numbers seem to be getting better as researchers learn more about how CAR-T works.
But the point is, as with most FL news, there is a lot of great stuff in this, and it should give us a lot of hope. But so far, there is no magic formula for FL treatment, and CAR-T doesn't seem to be. Keep that in mind in a few months when you hear about this being approved (assuming it happens).
But that doesn't mean this isn't worth being happy about. Every arrow in the quiver is a victory for us. So I have hopes this this one will end up helping a lot of people, too.
A couple of weeks ago, the FDA granted Regenerative Medicine Advanced Therapy (RMAT) designation for Kymriah (also known as tisagenlecleucel), a type of CAR-T therapy. This would be the first CAR-T for Relapsed or Refractory Follicular Lymphoma, if it is approved.
Let's break all of that down.
First, as most of you probably know, CAR-T stands for Chimeric Antigen Receptor (CAR) T-cell therapy. T cells are a kind of immune cell that do an excellent job of attacking invaders in the body. Cancer cells, however, are not invaders; they are our own cells that have been messed up so they don't know how to die like a normal cell. So T cells leave them alone. With CAR-T treatments, some of a patient's T cells are removed, taken to a lab so they can be changed to recognize cancer cells, and then put back into the patient, so they attack the cancer cells. Every treatment is made individually for a specific patient, so it's kind of expensive. Early CAR-T treatments work really well for some patients, pretty well for others, and not at all for some. But it shows huge promise.
(If you want to learn more about CAR-T, go to CAR-T and Follicular Non-Hodgkin's Lymphoma, a blog run by a CAR-T patient and a CAR-T caregiver. Good stuff.)
Right now, there are two CAR-T treatments that have received any kind of FDA approvals. The first is called Yescarta (also known as axicabtagene ciloleucel). It has been approved for some aggressive B cell lymphomas, including Transformed Follicular Lymphoma.
The second is called Kymriah. It has been approved for certain aggressive lymphomas and leukemias. But not Follicular Lymphoma.
The makers of Kymriah have applied for FDA approval, based on a Stage II clinical trial called ELARA. The FDA has granted a particular type of designation called Regenerative Medicine Advanced Therapy, or RMAT. This basically means that it is a type of therapy that is created from cells (like T cells), changes cells, or changes genes within cells. It was created to recognize that something like CAR-T is different from other types of treatments like traditional chemotherapy. the designation is only a few years old, but over 40 treatments have applied for it, which says something about where medicine is heading.
One last thing -- "Relapsed or Refractory" means the disease has stopped responding to the last treatment it received, or the last treatment just didn't work at all. This, to me, is the most important part of this approval. It means that anyone who has received treatment for Follicular Lymphoma would potentially be eligible to receive this CAR-T treatment, if it is approved. Right now, CAR-T is only available (outside of a clinical trial) to patients whose FL has transformed into a more aggressive lymphoma.
Now, a word of caution here. When results of CAR-T trials get announced, I see lots of people in online groups who say "I want this treatment! It looks great!" And they are right -- it does look great.
But it is expensive (roughly $400,000, from the numbers I have seen), since it needs to be created for each individual who gets it. It also can have some pretty rough side effects for some patients (though doctors have gotten better about anticipating them). And early trials found long-lasting effects for about 1/3 of patients, short-term effects (less than a year) for about 1/3, and no effects for the last 1/3. Those numbers seem to be getting better as researchers learn more about how CAR-T works.
But the point is, as with most FL news, there is a lot of great stuff in this, and it should give us a lot of hope. But so far, there is no magic formula for FL treatment, and CAR-T doesn't seem to be. Keep that in mind in a few months when you hear about this being approved (assuming it happens).
But that doesn't mean this isn't worth being happy about. Every arrow in the quiver is a victory for us. So I have hopes this this one will end up helping a lot of people, too.