About a month ago, I posted a link to a video series from OncLive called "The Evolving Landscape of Therapy for Follicular Lymphoma," which features interviews with two of my favorite Lymphoma Rock Stars -- Dr. Bruce Cheson and
Dr. Anas Younes. OncLive does a lot of these video series -- they post a new video every four five days, so the series takes about a month to complete.
It looks like they're getting to the end of this one. It's been a really good series.
The last video is called "The Future of Treatment in Follicular Lymphoma." The good doctors discuss some particular treatments, and how they represent paths that the field might take. Dr. Cheson discusses some kinase inhibitors, for example.
But both doctors also focus on some different issues that are just as important. We would expect them to focus on different treatments and how they work and what we can expect from them. But both doctors also mention a critical part of the future of treatment -- the patient.
Dr. Younes describes the long-term nature of the disease, one that is slow-growing and will probably require multiple treatments over a lifetime. "It's an irritating disease...the anxiety and the inconvenience of coming back and forth for multiple treatments in a lifespan is not ideal."
First of all, I love that he calls Follicular Lymphoma "irritating." I think he's right. It's not that way at first. When we're diagnosed, it's terrifying. But for many of us, as we learn to live with it over time, it becomes....irritating. It's frustrating to not have any symptoms, but to have all the anxiety that comes with waiting for symptoms. I really like that word.
But more important, I love that Dr. Younes recognizes how important Quality of Life is for patients. His solution is a hope that we can eventually have initial treatments that will give us 15 years before we need a second treatment. That's a good, long stretch of time, where maybe we can put this irritating disease out of our heads for a while.
Dr. Cheson also recognizes the need to pay attention to patients' needs. He mentions a new treatment that might be better than one that is currently available, but is less toxic. But is it "better"? Well, he says, "I think the major issue
is the schedule of administration, which is 3 weeks in a row and then a
week off. To do this indefinitely, you’re going to have problems with
patient compliance."
Very interesting. Sometimes I hear researchers describe Follicular Lymphoma as a "chronic" disease (actually, Dr. Younes uses that word in this video). But if it's "chronic," that means it's going to keep coming back, like, say diabetes. And that means it will need to be treated constantly. And, as Dr. Cheson says, patients are going to have to be willing to keep up the treatment schedule that comes with a chronic disease.
Follicular Lymphoma is different from other cancers. I know all cancers are different, and even FL has a bunch of different sub-types that make the experience really different for all of us. But I really do believe that FL is different on an emotional and Quality of Life level. For a lot of us, we learn to live with this in ways that lots of other cancer patients don't have to deal with.
And so, "the future of treatment" needs to take that into account, as Dr. Younes and Dr. Cheson very helpfully point out.
Whether or not that is actually happening is a different story.
But the important thing is that we patients need to remember that we have a voice, and we need to remember to use it. That might mean being active in working with an individual doctor to come up with a treatment plan that meets our lifestyle goals, and not just one that has a the longest median Overall Survival.
But it also means being active in the lymphoma community when we can, making sure that patients' voices are heard in larger ways, so we have a role in shaping research plans. That's harder, of course, but those opportunities do exist.
Fo now, though, I'm thankful that influential voices like these two Rock Stars are reminding the lymphoma community that patient needs do matter.
Saturday, September 30, 2017
Wednesday, September 27, 2017
Managing CAR-T Side Effects
I don't think my friends at the CAR-T and Follicular Non-Hodgkin's Lymphoma blog have gotten to this one yet, but they'll forgive me if I look at it first.
Some folks at MD Anderson, along with colleagues at some other institutions, have published "Chimeric Antigen Receptor T-cell Therapy — Assessment and Management of Toxicities" -- a plan for watching and responding to the potentially fatal side effects that can come with CAR-T therapy.
CAR-T has been in the news in the last few weeks because the FDA approved the treatment for some Leukemia patients. CAR-T thrapy involves removing a patient's T Cells (part of the immune system that attacks invaders) and changing them so they can recognize cancer cells as invaders and take care of them. The results in clinical trials have been excellent -- good enough to justify FDA approval, with more approvals possible in the future (including one, potentially, for some Follicular Lymphoma patients).
The problem with CAR-T is some of the side effects. In a way, CAR-T can work too well.
The potential side effect that causes the biggest problem is Cytokine-Release Syndrome, or CRS. CAR-T has been called a "living cancer treatment," because unlike something like chemical treatment, T Cells do their job by not just attacking invaders, but by overwhelming them -- when they sense an invader, they signal to other T Cells to attack. So an effective response means a whole army going against the invaders.
Those T Cells are activated by Cytokines, which are proteins whose job is to signal cells. The problem is, the Cytokines signal the T Cells, which then produce more Cytokines. Which signal more T Cells. Which produce more Cytokines.
The body can usually keep this cycle in check, so it doesn't cause too many problems. But sometimes it can't do that. And this results in CRS. The body is overwhelmed by Cytokines and T Cells. At best, it can make the patient feel really horrible (like having the flu, I have read). At worst, it can be fatal, and there has been at least one patient in a CAR-T trial who has died as a result.
Another side effect is neurotoxicity, or toxicity that affects the nervous system. CAR-T treatment can cause a specific type of neurotoxicity called CAR-T-cell-Related Encephalopathy Syndrome, or CRES. This affects the brain in particular.
These very nasty side effects have been dealt with since CAR-T treatments (and other Immunotherapies) have been in trials.
The folks at MD Anderson and their colleagues looked at published studies and about 100 patients to develop a system for identifying CAR-T side effects early, and dealing with them quickly before too much damage occurs. Cytokine release Syndrome does not have to be fatal, but it does have to be treated quickly to keep the worst from happening.
The system involves monitoring the patient for symptoms, grading the symptoms (determining how severe they are), and treating immediately. The treatment could involve "aggressive supportive care, anti-IL-6 therapy, and/or corticosteroids for severe cases." Anti-IL-6 are antibodies that target the Interleukin-6 Cytokine. Corticosteroids are commonly used to stop allergic reactions. Basically, the treatments are used to slow down the immune system response.
Interestingly, one researcher who was not part of this team pointed out that other approaches are also being used in other places, and that the ways to deal with CAR-T side effects are still evolving.
So while there is no guarantee that the system will stop a CRS reaction, but I find it comforting that there is a system being recommended. Lots of very good minds worked together for this, and it sounds like even more good minds will keep working to make it better.
Some folks at MD Anderson, along with colleagues at some other institutions, have published "Chimeric Antigen Receptor T-cell Therapy — Assessment and Management of Toxicities" -- a plan for watching and responding to the potentially fatal side effects that can come with CAR-T therapy.
CAR-T has been in the news in the last few weeks because the FDA approved the treatment for some Leukemia patients. CAR-T thrapy involves removing a patient's T Cells (part of the immune system that attacks invaders) and changing them so they can recognize cancer cells as invaders and take care of them. The results in clinical trials have been excellent -- good enough to justify FDA approval, with more approvals possible in the future (including one, potentially, for some Follicular Lymphoma patients).
The problem with CAR-T is some of the side effects. In a way, CAR-T can work too well.
The potential side effect that causes the biggest problem is Cytokine-Release Syndrome, or CRS. CAR-T has been called a "living cancer treatment," because unlike something like chemical treatment, T Cells do their job by not just attacking invaders, but by overwhelming them -- when they sense an invader, they signal to other T Cells to attack. So an effective response means a whole army going against the invaders.
Those T Cells are activated by Cytokines, which are proteins whose job is to signal cells. The problem is, the Cytokines signal the T Cells, which then produce more Cytokines. Which signal more T Cells. Which produce more Cytokines.
The body can usually keep this cycle in check, so it doesn't cause too many problems. But sometimes it can't do that. And this results in CRS. The body is overwhelmed by Cytokines and T Cells. At best, it can make the patient feel really horrible (like having the flu, I have read). At worst, it can be fatal, and there has been at least one patient in a CAR-T trial who has died as a result.
Another side effect is neurotoxicity, or toxicity that affects the nervous system. CAR-T treatment can cause a specific type of neurotoxicity called CAR-T-cell-Related Encephalopathy Syndrome, or CRES. This affects the brain in particular.
These very nasty side effects have been dealt with since CAR-T treatments (and other Immunotherapies) have been in trials.
The folks at MD Anderson and their colleagues looked at published studies and about 100 patients to develop a system for identifying CAR-T side effects early, and dealing with them quickly before too much damage occurs. Cytokine release Syndrome does not have to be fatal, but it does have to be treated quickly to keep the worst from happening.
The system involves monitoring the patient for symptoms, grading the symptoms (determining how severe they are), and treating immediately. The treatment could involve "aggressive supportive care, anti-IL-6 therapy, and/or corticosteroids for severe cases." Anti-IL-6 are antibodies that target the Interleukin-6 Cytokine. Corticosteroids are commonly used to stop allergic reactions. Basically, the treatments are used to slow down the immune system response.
Interestingly, one researcher who was not part of this team pointed out that other approaches are also being used in other places, and that the ways to deal with CAR-T side effects are still evolving.
So while there is no guarantee that the system will stop a CRS reaction, but I find it comforting that there is a system being recommended. Lots of very good minds worked together for this, and it sounds like even more good minds will keep working to make it better.
Saturday, September 23, 2017
Taking a Break from Follicular Lymphoma
An anonymous reader posted a comment yesterday on my last post (about Immunotherapies), and I started to respond to it as a comment, but I decided it would be better to put it here, where it might be seen more easily.
The comment said this:
All excellent news! Thank you for keeping us informed! I am approaching my one year diagnosis anniversary, and had a complete response to B&R seven months ago. I'm on the fence about staying informed. On one hand I'd like to put all of this in the rear view. But on the other hand, it's the kind of baggage that keeps hanging on... At any rate, thank you for your efforts!
First of all, congratulations on the Complete Response! That's awesome, and even more awesome that it is a durable response, and continues to last. I hope it goes on for a long time.
Second, and just as important -- if you need a break, then take it.
This blog is a funny thing (from the perspective of the person who writes it).
I've been doing this for almost 10 years now, and I noticed a distinct pattern a long time ago.
There are people who discover the blog, usually soon after they were diagnosed. And based on what they say in their comments and private emails to me, they spent a few (or more than a few) hours reading the blog, going back a few years, learning new things, and getting into Follicular Lymphoma through my eyes, as someone who lived it. (Some of you might recognize yourselves in there.....)
Very often, those people will continue to read -- eager for every new post. And they'll comment on every one, or send me another email. And I love to hear from them. And then they'll let me know that a treatment worked, and I'll celebrate with them. And then they'll comment some more.
And then, after a while -- 6 months, a year -- the comments and emails will become more infrequent. And then they'll stop, and I'll never hear from them again. Over 10 years, that's happened a whole lot of times.
And I'm fine with that.
The blog is run through Blogger, which is owned by Google. I really like the platform. One of the nice features is its analytics -- the statistics that Google provides to me about readers. Google doesn't tell me anything about individual readers, but I do know things like how many people have visited each day or week, and what countries readers are from (there are a lot -- I've had readers from over 70 different countries in the last year. As I'm writing this, there are people reading the blog from the U.S., Brazil, and France. How cool is that?!).
And I can see patterns in the analytics, too. I will go from a large number of readers, to a slow decline over a few months, so that I have about half as many monthly readers as I once had.
I can put things together. Readership goes up and down, because that mirrors the way Follicular Lymphoma works. People get diagnosed, and they get hungry for information. They get a Complete Response, and they take a break. That's how it works.
And I'm fine with that.
One of the reasons I've never had advertising on the site is that I don't want to be tempted to have a few dollars be the motivation for doing this. If I relied on making money from the blog, I would never say what I'm about to say:
If you need to stop reading, then stop reading. My great hope is that I can give people something that they need. If you don't need it any more -- or if getting it is making you feel worse -- then stop reading.
That makes me a lousy social media manager. But that's not what I am. I'm a patient, like most of you, and I'd want someone to tell me the same thing -- do what you need to do to make yourself happy.
I say it a lot, and I'll say it yet again -- Follicular Lymphoma is an emotional disease as much as it is a physical one. Take a break and heal that part of yourself.
Anonymous reader -- Stop reading if you need to.
When you're ready, come back. I'll still be here.
I promise.
Good luck with the remission. I sincerely hope you never need to be informed about Follicular Lymphoma ever again.
The comment said this:
All excellent news! Thank you for keeping us informed! I am approaching my one year diagnosis anniversary, and had a complete response to B&R seven months ago. I'm on the fence about staying informed. On one hand I'd like to put all of this in the rear view. But on the other hand, it's the kind of baggage that keeps hanging on... At any rate, thank you for your efforts!
First of all, congratulations on the Complete Response! That's awesome, and even more awesome that it is a durable response, and continues to last. I hope it goes on for a long time.
Second, and just as important -- if you need a break, then take it.
This blog is a funny thing (from the perspective of the person who writes it).
I've been doing this for almost 10 years now, and I noticed a distinct pattern a long time ago.
There are people who discover the blog, usually soon after they were diagnosed. And based on what they say in their comments and private emails to me, they spent a few (or more than a few) hours reading the blog, going back a few years, learning new things, and getting into Follicular Lymphoma through my eyes, as someone who lived it. (Some of you might recognize yourselves in there.....)
Very often, those people will continue to read -- eager for every new post. And they'll comment on every one, or send me another email. And I love to hear from them. And then they'll let me know that a treatment worked, and I'll celebrate with them. And then they'll comment some more.
And then, after a while -- 6 months, a year -- the comments and emails will become more infrequent. And then they'll stop, and I'll never hear from them again. Over 10 years, that's happened a whole lot of times.
And I'm fine with that.
The blog is run through Blogger, which is owned by Google. I really like the platform. One of the nice features is its analytics -- the statistics that Google provides to me about readers. Google doesn't tell me anything about individual readers, but I do know things like how many people have visited each day or week, and what countries readers are from (there are a lot -- I've had readers from over 70 different countries in the last year. As I'm writing this, there are people reading the blog from the U.S., Brazil, and France. How cool is that?!).
And I can see patterns in the analytics, too. I will go from a large number of readers, to a slow decline over a few months, so that I have about half as many monthly readers as I once had.
I can put things together. Readership goes up and down, because that mirrors the way Follicular Lymphoma works. People get diagnosed, and they get hungry for information. They get a Complete Response, and they take a break. That's how it works.
And I'm fine with that.
One of the reasons I've never had advertising on the site is that I don't want to be tempted to have a few dollars be the motivation for doing this. If I relied on making money from the blog, I would never say what I'm about to say:
If you need to stop reading, then stop reading. My great hope is that I can give people something that they need. If you don't need it any more -- or if getting it is making you feel worse -- then stop reading.
That makes me a lousy social media manager. But that's not what I am. I'm a patient, like most of you, and I'd want someone to tell me the same thing -- do what you need to do to make yourself happy.
I say it a lot, and I'll say it yet again -- Follicular Lymphoma is an emotional disease as much as it is a physical one. Take a break and heal that part of yourself.
Anonymous reader -- Stop reading if you need to.
When you're ready, come back. I'll still be here.
I promise.
Good luck with the remission. I sincerely hope you never need to be informed about Follicular Lymphoma ever again.
Thursday, September 21, 2017
Immunotherapies for Blood Cancers
The Journal of Community and Supportive Oncology has a really nice article in their last issue called "Immunotherapies Shape the Treatment Landscape for Hematologic Malignancies."
The journal describes itself as "Research and reviews for the practicing oncologist," so the article itself is a little technical. However, for a not-a-medical-doctor-but-still-a-cancer-nerd like me, it's a fun thing to read.
As the title of the article suggests, the focus is on looking at how Immunotherapies are playing a big role in blood cancer treatment these days. Immunotherapies are treatments that use the body's own immune system to fight off cancer. That's the problem with cancer cells -- they don't belong in the body, but they also have lots of ways of fooling the body into letting them stay. And then they grow and do bad things.
(They're like your roommate's friend who is going just sleep on the couch for a few days "until he finds something else," and the next thing you know, it's six months later, all of his stuff has taken over the living room, and there's never any milk for your cereal because the "guest" watched The Big Lebowski one night and now he drinks White Russians all day instead of looking for his own place.
That's basically what cancer is. If you don't understand the comparison, just skip to the next paragraph.)
As the article points out, blood cancers are especially good for Immunotherapy, since the immune cells that should be attacking the cancer cells are swimming right beside them in the blood.
The author breaks down some of the Immunotherapies that have been approved or are in clinical trials.
T Cells. The first general way of using Immunotherapy is by "exploiting T cells." T cells are immune cells that work in a bunch of different ways to battle invaders in the body. One common way of using T cells is in Stem Cell Transplants. In an Allo Stem Cell Transplant, someone else's T cells are put into the cancer patient's body. The big danger is Graft Versus Host Disease, where the new T cells attack the patient's healthy cells, thinking they are invaders.
CAR-T. A more sophisticated use of T cells is through CAR-T therapies. They have been getting lots of attention lately, and for good reason. In CAR-T therapies, T cells are removed from the body, changed into something that can recognize cancer cells as the invaders that they are, and attack them. (If you want more news about CAR-T treatments and Follicular Lymphoma, go to the CAR-T and Follicular Non-Hodgkin's Lymphoma blog. They have some nice updates today.)
Monoclonal Antibodies. These are the oldest of the Immunotherapies, and Rituxan is the king. It first appeared in 1997, and it has played a huge role in increasing Survival rates in Follicular Lymphoma. There have been a lot of attempts to create a MAB that is as good as Rituxan, with little success. But that could change. For FL, an Obinutuzumab combination seems a little better than Rituxan, and some other MABs that target different things are also being tested (like Keytruda, targeting PD-1).
Innovative Design. This group, according to the author, takes Monoclonal Antibodies "to the next level." It includes treatments like "Antibody-Drug Conjugates." Basically, you use a MAB that targets cancer cells, and add a little bit of a chemotherapy (or something like it) so the chemo gets delievered right to the cancer cell. In theory, that should mean the effectiveness of chemo but with the limited side effects that come with a targeted treatment. It also inlcudes BiTEs, or Bi-specific T-cell Engagers. These treatments involve fusing together two antibodies. there are ADCs and BiTEs that are being developed for Follicular Lymphoma, but none are very far along the trial process just yet.
B-Cell Receptors. Finally, there are B-Cell targeting treatments. These aren't really Immunotherapy treatments, but they are kind of hot right now. The target the B-Cell Receptor pathway, the chain of events that keep B-Cells alive and (if they are malignant) doing damage. of course, Follicular Lymphoma is a B-Cell lymphoma, so these treatments are especially important for us. there are some familiar names here, including Ibrutinib and Idelalisib.
**********************
So the article provides a nice review of some of the promising developments in blood cancers, including Follicular Lymphoma. Even if you don't read the actual article, click on it and take a look at the charts, just to see how many treatments have been approved recently or are in development. It's impressive.
Of course, not all of them will work for Follicular Lymphoma, but that's OK. It's still hopeful to see how many treatments are in the works -- and this isn't even all of them.
Lots to look forward to.
The journal describes itself as "Research and reviews for the practicing oncologist," so the article itself is a little technical. However, for a not-a-medical-doctor-but-still-a-cancer-nerd like me, it's a fun thing to read.
As the title of the article suggests, the focus is on looking at how Immunotherapies are playing a big role in blood cancer treatment these days. Immunotherapies are treatments that use the body's own immune system to fight off cancer. That's the problem with cancer cells -- they don't belong in the body, but they also have lots of ways of fooling the body into letting them stay. And then they grow and do bad things.
(They're like your roommate's friend who is going just sleep on the couch for a few days "until he finds something else," and the next thing you know, it's six months later, all of his stuff has taken over the living room, and there's never any milk for your cereal because the "guest" watched The Big Lebowski one night and now he drinks White Russians all day instead of looking for his own place.
That's basically what cancer is. If you don't understand the comparison, just skip to the next paragraph.)
As the article points out, blood cancers are especially good for Immunotherapy, since the immune cells that should be attacking the cancer cells are swimming right beside them in the blood.
The author breaks down some of the Immunotherapies that have been approved or are in clinical trials.
T Cells. The first general way of using Immunotherapy is by "exploiting T cells." T cells are immune cells that work in a bunch of different ways to battle invaders in the body. One common way of using T cells is in Stem Cell Transplants. In an Allo Stem Cell Transplant, someone else's T cells are put into the cancer patient's body. The big danger is Graft Versus Host Disease, where the new T cells attack the patient's healthy cells, thinking they are invaders.
CAR-T. A more sophisticated use of T cells is through CAR-T therapies. They have been getting lots of attention lately, and for good reason. In CAR-T therapies, T cells are removed from the body, changed into something that can recognize cancer cells as the invaders that they are, and attack them. (If you want more news about CAR-T treatments and Follicular Lymphoma, go to the CAR-T and Follicular Non-Hodgkin's Lymphoma blog. They have some nice updates today.)
Monoclonal Antibodies. These are the oldest of the Immunotherapies, and Rituxan is the king. It first appeared in 1997, and it has played a huge role in increasing Survival rates in Follicular Lymphoma. There have been a lot of attempts to create a MAB that is as good as Rituxan, with little success. But that could change. For FL, an Obinutuzumab combination seems a little better than Rituxan, and some other MABs that target different things are also being tested (like Keytruda, targeting PD-1).
Innovative Design. This group, according to the author, takes Monoclonal Antibodies "to the next level." It includes treatments like "Antibody-Drug Conjugates." Basically, you use a MAB that targets cancer cells, and add a little bit of a chemotherapy (or something like it) so the chemo gets delievered right to the cancer cell. In theory, that should mean the effectiveness of chemo but with the limited side effects that come with a targeted treatment. It also inlcudes BiTEs, or Bi-specific T-cell Engagers. These treatments involve fusing together two antibodies. there are ADCs and BiTEs that are being developed for Follicular Lymphoma, but none are very far along the trial process just yet.
B-Cell Receptors. Finally, there are B-Cell targeting treatments. These aren't really Immunotherapy treatments, but they are kind of hot right now. The target the B-Cell Receptor pathway, the chain of events that keep B-Cells alive and (if they are malignant) doing damage. of course, Follicular Lymphoma is a B-Cell lymphoma, so these treatments are especially important for us. there are some familiar names here, including Ibrutinib and Idelalisib.
**********************
So the article provides a nice review of some of the promising developments in blood cancers, including Follicular Lymphoma. Even if you don't read the actual article, click on it and take a look at the charts, just to see how many treatments have been approved recently or are in development. It's impressive.
Of course, not all of them will work for Follicular Lymphoma, but that's OK. It's still hopeful to see how many treatments are in the works -- and this isn't even all of them.
Lots to look forward to.
Monday, September 18, 2017
Another FDA Approval for Follicular Lymphoma: Copanlisib
The big Follicular Lymphoma news from the weekend was the FDA's approval of Copanlisib, also known as Aliqopa, for relapsed FL.
Copanlisib is a type of kinase inhibitor. Like other inhibitors, it doesn't work by directly killing a cancer cell, the way traditional chemotherapy does. Instead, it works by stopping (or inhibiting) a process that keeps the cancer cells alive.
In this case, Copanlisib stops an enzyme that is part of a long chain called the PI3K/AKT/mTOR pathway. In that pathway, a bunch of reactions happen -- an enzyme tells a protein to tell something else that something needs to happen for the cell to grow, or divide, or just stay alive. there are other treatments that target different parts of the pathway, but Copanlisib targets that first part, the PI3K part. Idelalisib is another PI3K kinase inhibitor -- it's a good one to target for Follicular Lymphoma. There are least two other kinase inhibitors being developed for FL.
Copanlisib was given accelerated approval by the FDA, which means it went through the approval process quicker than it normally would. It also means that the approval isn't complete yet. The approval was given based on a phase II clinical trial, that showed good results on a smaller patient population. A phase III trial will need to confirm that Copanlisib is as good as it seems.
The approval is also for a fairly narrow group -- Follicular Lymphoma patients who have relapsed, and who have had at least two prior systemic treatments (a treatment that involves the entire body or "system" -- something like chemotherapy).
The approval points out that many patients who have this kind of treatment history are having a hard time finding something that works, and Copanlisib does seem to work for a lot of them. That phase II trial found that Follicular Lymphoma patients in the study had a 59% Overall Response rate, with a median response of just over a year. Pretty good when you're having trouble finding something that works, and unfortunately, there are a lot of folks in that position.
Of course, there are side effects. Some of them are common in lymphoma treatments -- since they go after immune cells, the side effects involve different types of lowered immunity. But Copanlisib also has some other different side effects, like hyperglycemia, or high blood sugar. Copanlisib effects an enzyme that is involved in insulin production, so the body doesn't process blood sugar as efficiently as it should.
So we have another arrow in the quiver -- another treatment that can be used if the situation is right. That's always good news.
In addition to the phase III trial that will confirm that the approval was justified, there is at least one other trial involving Copanlisib for FL. This one combines it with immunochemotherapy (R-CHOP or R-Bendamustine). Lots of treatments these days seem to work better as a combination with other treatments, so it makes sense that this is being explored.
Lots to look forward to -- potential treatments that could help us all in the future.
(This is a good time to remind you all that treatments can't be studied and approved with people joining clinical trials. So if you are in the unfortunate position of needing treatment, talk to your doctor about clinical trials that might be appropriate -- check here to learn more.)
Copanlisib is a type of kinase inhibitor. Like other inhibitors, it doesn't work by directly killing a cancer cell, the way traditional chemotherapy does. Instead, it works by stopping (or inhibiting) a process that keeps the cancer cells alive.
In this case, Copanlisib stops an enzyme that is part of a long chain called the PI3K/AKT/mTOR pathway. In that pathway, a bunch of reactions happen -- an enzyme tells a protein to tell something else that something needs to happen for the cell to grow, or divide, or just stay alive. there are other treatments that target different parts of the pathway, but Copanlisib targets that first part, the PI3K part. Idelalisib is another PI3K kinase inhibitor -- it's a good one to target for Follicular Lymphoma. There are least two other kinase inhibitors being developed for FL.
Copanlisib was given accelerated approval by the FDA, which means it went through the approval process quicker than it normally would. It also means that the approval isn't complete yet. The approval was given based on a phase II clinical trial, that showed good results on a smaller patient population. A phase III trial will need to confirm that Copanlisib is as good as it seems.
The approval is also for a fairly narrow group -- Follicular Lymphoma patients who have relapsed, and who have had at least two prior systemic treatments (a treatment that involves the entire body or "system" -- something like chemotherapy).
The approval points out that many patients who have this kind of treatment history are having a hard time finding something that works, and Copanlisib does seem to work for a lot of them. That phase II trial found that Follicular Lymphoma patients in the study had a 59% Overall Response rate, with a median response of just over a year. Pretty good when you're having trouble finding something that works, and unfortunately, there are a lot of folks in that position.
Of course, there are side effects. Some of them are common in lymphoma treatments -- since they go after immune cells, the side effects involve different types of lowered immunity. But Copanlisib also has some other different side effects, like hyperglycemia, or high blood sugar. Copanlisib effects an enzyme that is involved in insulin production, so the body doesn't process blood sugar as efficiently as it should.
So we have another arrow in the quiver -- another treatment that can be used if the situation is right. That's always good news.
In addition to the phase III trial that will confirm that the approval was justified, there is at least one other trial involving Copanlisib for FL. This one combines it with immunochemotherapy (R-CHOP or R-Bendamustine). Lots of treatments these days seem to work better as a combination with other treatments, so it makes sense that this is being explored.
Lots to look forward to -- potential treatments that could help us all in the future.
(This is a good time to remind you all that treatments can't be studied and approved with people joining clinical trials. So if you are in the unfortunate position of needing treatment, talk to your doctor about clinical trials that might be appropriate -- check here to learn more.)
Friday, September 15, 2017
Happy Lymphoma Awareness Day!
A happy World Lymphoma Awareness Day to you all!
It's an important day for us all. Our special day. Kind of like Mother's Day is for moms, but it's less likely that we're getting breakfast in bed.
It really is an important day, though. I say this a lot when this day rolls around, and it's still true -- it feels strange to set aside a day like this, when I have been aware of lymphoma every day since January 15, 2008.
And if you're reading this blog, my guess is that you are also feeling the same, or something like it. Awareness isn't really an issue for a lot of us.
But Lymphoma Awareness Day isn't just for us. I've been spending a lot of time on various internet support groups and discussion boards devoted to lymphoma, and I'm always amazed at the misinformation people have gotten about lymphoma and other types of cancer.
Part of that is not knowing where to turn. Part of it is, honestly, people looking for shortcuts to getting better, and believing that those shortcuts exist. And for a lot of people, that lack of awareness is from fear -- they either don't want to know because it's easier to just not think about it all, or they fear things like the side effects of chemo, so they look for other ways that they hope will cure them.
Some knowledge would go a long way. there's so much to be hopeful about, so much less to fear than it seems.
OK, my shameless plug -- I talk about some of this in a piece I wrote for The Mighty for Lymphoma Awareness Day. You can read it here. Feel free to share.
Lots of other great resources out there, too, for yourselves and for sharing with others:
Enjoy the day. And if no one served you breakfast in bed today, then have two desserts at dinner. You deserve it.
It's an important day for us all. Our special day. Kind of like Mother's Day is for moms, but it's less likely that we're getting breakfast in bed.
It really is an important day, though. I say this a lot when this day rolls around, and it's still true -- it feels strange to set aside a day like this, when I have been aware of lymphoma every day since January 15, 2008.
And if you're reading this blog, my guess is that you are also feeling the same, or something like it. Awareness isn't really an issue for a lot of us.
But Lymphoma Awareness Day isn't just for us. I've been spending a lot of time on various internet support groups and discussion boards devoted to lymphoma, and I'm always amazed at the misinformation people have gotten about lymphoma and other types of cancer.
Part of that is not knowing where to turn. Part of it is, honestly, people looking for shortcuts to getting better, and believing that those shortcuts exist. And for a lot of people, that lack of awareness is from fear -- they either don't want to know because it's easier to just not think about it all, or they fear things like the side effects of chemo, so they look for other ways that they hope will cure them.
Some knowledge would go a long way. there's so much to be hopeful about, so much less to fear than it seems.
OK, my shameless plug -- I talk about some of this in a piece I wrote for The Mighty for Lymphoma Awareness Day. You can read it here. Feel free to share.
Lots of other great resources out there, too, for yourselves and for sharing with others:
- "Know Your Nodes" from Lymphoma Canada (take the quiz!)
- Lymphomation.org's downloadable brochure to share with friends.
- The Lymphoma Coalition's World Lymphoma Day Site, with ready-made images to add to your Facebook, Twitter, and Instagram to promote the Awareness.
Enjoy the day. And if no one served you breakfast in bed today, then have two desserts at dinner. You deserve it.
Monday, September 11, 2017
The Emotional Side Effects of Cancer Treatments
This past week, the European Society for Medical Oncology (ESMO) annual meeting took place. There's some good stuff coming out of it. I know I tend to focus on oncology meetings that take place in the United States, like ASCO and ASH, but I'm becoming more aware of some of these meetings outside the U.S. lately. I plan to look at a couple of Follicular Lymphoma-related presentations over the next week or so.
But first, a report about a session called "Change of patient perceptions of chemotherapy side effects in breast and ovarian cancer patients." I came across this on Facebook, where it was posted by Patients Against Lymphoma, the folks who put together Lymphomation.org. (While I'm here, I might as well link to their Facebook page, too -- consider Liking it if you're on Facebook.) I'm not focusing so much on the breast and ovarian cancer part of this, but on the results that are talked about in the link -- the emotional side of cancer treatments.
I've been focused on this subject a lot lately -- the idea that Follicular Lymphoma is as much an emotional disease as a physical disease, since for so many of us, we watch and wait. Sometimes that watching comes before we even get treatment, and sometimes it comes after we get treatment, even if the treatment was successful. It's kind of the way it goes with an incurable cancer -- we're always waiting for the Big Return that we're told is coming at some point. There's an emotional side effect to all of that, even when there are no physical side effects.
The ESMO presentation was a follow-up to research done 15 years ago. Patients were give chemotherapy for breast or ovarian cancer, and given a survey before, during, and after they had chemo. Patients were presented with two sets of side effects of chemo. One set listed physical side effects, and the other non-physical side effects. they were asked to choose the 5 from each list that concerned them most. then those ten were put together, and they were asked to choose the top five in the combined list.
What the researchers found was that, over time, the concerns change. At the beginning of chemo, there is more emphasis on physical side effects. But as they get used to these, and they get treatment (anti-nausea drugs for example), the non-physical side effects become much more of a concern.
And the researchers noticed. As the lead researcher said, "As doctors, these findings might lead us to consider possible improvements to the accompanying therapies we offer our patients....There is also a clear case for providing stronger psychological support to address patients' social anxieties and family-related concerns."
I like to hear that. I like when doctors recognize the emotional needs of patients, because I think they too often forget about them.
And that matters a lot for Follicular Lymphoma patients in particular. My blood work might be "rock solid," as Dr. R used to say to me. But my anxiety might be spinning like the centrifuge that separated my blood sample -- anything but "rock solid." I'm not so much worried about right now. I might be worried about what happens six months from now, when my daughter starts looking at colleges, and I worry about how I'll pay for it if I get sick. With FL, the worry always seems to be about later.
More from one of the research team members: "The results show that there might be a gap between what doctors think is important or disturbing for patients, and what patients really think. Physical, psychological, social and spiritual support is needed at every stage of the disease....Going forward, similar studies also need to be done for other types of cancer - including analyses of how an optimal management of side effects influences the disease trajectory."
Amen to that. I would welcome and encourage researchers to keep looking into issues like the emotional needs of patients, the ways Quality of Life are affected by treatments, and the unique needs that come with different types of cancer.
In the meantime, you can help yourself by being honest with your doctor and asking for help if you need it. Most hospitals have some kind of emotional assistance programs (a social worker, or psychologist, or some other therapist), so a good oncologist should know about where you can get help.
And there's no shame in needing help. You wouldn't try to tackle the physical problems of having cancer all by yourself (at least I hope you wouldn't), so why would you try to deal with the emotional problems by yourself?
But first, a report about a session called "Change of patient perceptions of chemotherapy side effects in breast and ovarian cancer patients." I came across this on Facebook, where it was posted by Patients Against Lymphoma, the folks who put together Lymphomation.org. (While I'm here, I might as well link to their Facebook page, too -- consider Liking it if you're on Facebook.) I'm not focusing so much on the breast and ovarian cancer part of this, but on the results that are talked about in the link -- the emotional side of cancer treatments.
I've been focused on this subject a lot lately -- the idea that Follicular Lymphoma is as much an emotional disease as a physical disease, since for so many of us, we watch and wait. Sometimes that watching comes before we even get treatment, and sometimes it comes after we get treatment, even if the treatment was successful. It's kind of the way it goes with an incurable cancer -- we're always waiting for the Big Return that we're told is coming at some point. There's an emotional side effect to all of that, even when there are no physical side effects.
The ESMO presentation was a follow-up to research done 15 years ago. Patients were give chemotherapy for breast or ovarian cancer, and given a survey before, during, and after they had chemo. Patients were presented with two sets of side effects of chemo. One set listed physical side effects, and the other non-physical side effects. they were asked to choose the 5 from each list that concerned them most. then those ten were put together, and they were asked to choose the top five in the combined list.
What the researchers found was that, over time, the concerns change. At the beginning of chemo, there is more emphasis on physical side effects. But as they get used to these, and they get treatment (anti-nausea drugs for example), the non-physical side effects become much more of a concern.
And the researchers noticed. As the lead researcher said, "As doctors, these findings might lead us to consider possible improvements to the accompanying therapies we offer our patients....There is also a clear case for providing stronger psychological support to address patients' social anxieties and family-related concerns."
I like to hear that. I like when doctors recognize the emotional needs of patients, because I think they too often forget about them.
And that matters a lot for Follicular Lymphoma patients in particular. My blood work might be "rock solid," as Dr. R used to say to me. But my anxiety might be spinning like the centrifuge that separated my blood sample -- anything but "rock solid." I'm not so much worried about right now. I might be worried about what happens six months from now, when my daughter starts looking at colleges, and I worry about how I'll pay for it if I get sick. With FL, the worry always seems to be about later.
More from one of the research team members: "The results show that there might be a gap between what doctors think is important or disturbing for patients, and what patients really think. Physical, psychological, social and spiritual support is needed at every stage of the disease....Going forward, similar studies also need to be done for other types of cancer - including analyses of how an optimal management of side effects influences the disease trajectory."
Amen to that. I would welcome and encourage researchers to keep looking into issues like the emotional needs of patients, the ways Quality of Life are affected by treatments, and the unique needs that come with different types of cancer.
In the meantime, you can help yourself by being honest with your doctor and asking for help if you need it. Most hospitals have some kind of emotional assistance programs (a social worker, or psychologist, or some other therapist), so a good oncologist should know about where you can get help.
And there's no shame in needing help. You wouldn't try to tackle the physical problems of having cancer all by yourself (at least I hope you wouldn't), so why would you try to deal with the emotional problems by yourself?
Thursday, September 7, 2017
Vitamin C and Follicular Lymphoma
So while we're on the subject of Vitamins and Lymphoma, let's talk about Vitamin C.
In my last post, I wrote about a recent study involving Vitamin D -- it showed that low Vitamin D levels might result in lower survival rates for Follicular Lymphoma. The researchers admit that more study is needed on this, so don't go swallowing bottles of Vitamin D pills just yet. Talk to your doctor about checking your levels and why it's important.
The journal Cell recently published a heavy research article on Vitamin C called "Restoration of TET2 Function Blocks Aberrant Self-Renewal and Leukemia Progression." When I say "heavy," I mean it has some serious discussion of cell-level processes and genetics. Cell is not a journal about clinical oncology and how doctors treat patients. It's about what goes on in our cells, on the smallest level -- the normal and the abnormal.
So I was happy to get some help with this heavy stuff from an article on Lymphoma News Today, which included some explanation from the researchers in the study.
Apparently, Vitamin C has been an alternative treatment for cancer for a long time -- people think that taking lots of it will stop their cancer. While there is some truth to that (Vitamin C was shown to kill cancer cells in a test tube), research in 2008 on real people showed that giving a large dose of Vitamin C by infusion had few side effects, but also had no effect on cancer. But there was some suggestion that maybe Vitamin C needed some help if it was going to work.
The recent article in Cell helps explain why. Basically, one of the ways that blood cancers form is because of a problem with an enzyme called TET2. When TET2 isn't doing its job, stem cells can't turn into white blood cells. Think of stem cells as baby cells that are supposed to grow up in to different kinds of adult cells. TET2 helps that happen. When TET2 doesn't work, the stem cells don't grow up, but they don't die, either. They go into the blood stream and take up room and cause problems.
So when TET2 isn't working, your body is basically overrun by mutant zombie babies. Let that image sink in for a minute.
Vitamin C seems to help TET2 work again the way it is supposed to by blocking the thing that makes TET2 stop working. No more zombie babies.
But the Vitamin C needs help, too. The researchers found that something called a PARP inhibitor helps the Vitamin C do its job. Inhibitors of different types are becoming more common in all kinds of cancers, including Follicular Lymphoma. The PARP inhibitor stops a protein from fixing DNA in cancer cells, causing them to die. A PARP inhibitor is used now on some kinds of ovarian cancer.
The lymphoma connection here is that there is at least one PARP inhibitor being tested on Follicular Lymphoma.
All of this sounds great. But like the Vitamin D study, there needs to be a lot more research. All of the work done for this article was done on mouse models. there are a lot of steps that need to be completed before this is ever shown to be safe and effective on real FL patients.
So that's the good thing about this study -- we might have an actual treatment strategy come out of it someday (years from now).
In the meantime, while you are avoiding the Vitamin D section at the pharmacy, go ahead and avoid the Vitamin C section, too. At least until you talk to your doctor about whether or not you need Vitamin C for something other than cancer.
Bottom line, as always -- stay informed, talk to your doctor, and if a cancer "cure" sounds too good to be true, it probably is.
In my last post, I wrote about a recent study involving Vitamin D -- it showed that low Vitamin D levels might result in lower survival rates for Follicular Lymphoma. The researchers admit that more study is needed on this, so don't go swallowing bottles of Vitamin D pills just yet. Talk to your doctor about checking your levels and why it's important.
The journal Cell recently published a heavy research article on Vitamin C called "Restoration of TET2 Function Blocks Aberrant Self-Renewal and Leukemia Progression." When I say "heavy," I mean it has some serious discussion of cell-level processes and genetics. Cell is not a journal about clinical oncology and how doctors treat patients. It's about what goes on in our cells, on the smallest level -- the normal and the abnormal.
So I was happy to get some help with this heavy stuff from an article on Lymphoma News Today, which included some explanation from the researchers in the study.
Apparently, Vitamin C has been an alternative treatment for cancer for a long time -- people think that taking lots of it will stop their cancer. While there is some truth to that (Vitamin C was shown to kill cancer cells in a test tube), research in 2008 on real people showed that giving a large dose of Vitamin C by infusion had few side effects, but also had no effect on cancer. But there was some suggestion that maybe Vitamin C needed some help if it was going to work.
The recent article in Cell helps explain why. Basically, one of the ways that blood cancers form is because of a problem with an enzyme called TET2. When TET2 isn't doing its job, stem cells can't turn into white blood cells. Think of stem cells as baby cells that are supposed to grow up in to different kinds of adult cells. TET2 helps that happen. When TET2 doesn't work, the stem cells don't grow up, but they don't die, either. They go into the blood stream and take up room and cause problems.
So when TET2 isn't working, your body is basically overrun by mutant zombie babies. Let that image sink in for a minute.
Vitamin C seems to help TET2 work again the way it is supposed to by blocking the thing that makes TET2 stop working. No more zombie babies.
But the Vitamin C needs help, too. The researchers found that something called a PARP inhibitor helps the Vitamin C do its job. Inhibitors of different types are becoming more common in all kinds of cancers, including Follicular Lymphoma. The PARP inhibitor stops a protein from fixing DNA in cancer cells, causing them to die. A PARP inhibitor is used now on some kinds of ovarian cancer.
The lymphoma connection here is that there is at least one PARP inhibitor being tested on Follicular Lymphoma.
All of this sounds great. But like the Vitamin D study, there needs to be a lot more research. All of the work done for this article was done on mouse models. there are a lot of steps that need to be completed before this is ever shown to be safe and effective on real FL patients.
So that's the good thing about this study -- we might have an actual treatment strategy come out of it someday (years from now).
In the meantime, while you are avoiding the Vitamin D section at the pharmacy, go ahead and avoid the Vitamin C section, too. At least until you talk to your doctor about whether or not you need Vitamin C for something other than cancer.
Bottom line, as always -- stay informed, talk to your doctor, and if a cancer "cure" sounds too good to be true, it probably is.
Monday, September 4, 2017
Vitamin D and Follicular Lymphoma
The Blood Cancer Journal just published an article "Vitamin D Insufficiency is Associated with an Increased Risk of Early Clinical Failure in Follicular Lymphoma." This isn't the first study on Vitamin D and FL, and it builds on the others in some important ways.
Let's go back a couple of years first. In 2015, the Journal of Clinical Oncology published a study on Vitamin D and FL that said low blood levels of D were associated with lower Overall Survival in patients who had been given Immunochemotherapy (Rituxan or RIT + CHOP). There were lots of alarming headlines in the cancer media about the study, and is the case too often, many of them misrepresented what the study actually said. I wrote about it in the blog -- the study's conclusion said "serum vitamin D might be the first potentially modifiable factor to be associated with FL survival." Might be. It was an interesting study that called for more research before we could know for sure.
The Blood Cancer Journal study gives us some of that research. But let's get this out there right away -- even these researchers say we need more research ("Further investigations are needed to determine whether outcomes could be improved in FL by supplementation with this readily available vitamin.")
I know I haven't even gotten to what's in the research yet, but I think it's really important to make sure, near the beginning of this post, to remind everyone to not jump to conclusions. I've been reading a lot of stuff online lately where people are taking small bits of information about cancer and making them into Big Things that they aren't. This study isn't saying Vitamin D will cure your cancer. I want to be clear about that.
So, about that research.
The researchers looked at 642 Follicular Lymphoma patients who were enrolled in the study between 2002 and 2012. Unlike the earlier JCO study, which looked only at patients who were given R or RIT + CHOP, the patients in this study had a number of different treatments, including R + chemo (CHOP, CVP or Bendamustine), but also straight Rituxan, watch and wait, and other treatments (which they don't list separately). That range of treatments is important, given that there really isn't a standard treatment for FL.
The researchers measured whether low Vitamin D levels had an effect on Overall Survival, Lymphoma-Specific Survival (whether lymphoma was the cause of death), and EFS12, or Event Free Survival at 12 months (this same research team had found that EFS12 was a predictor of Overall Survival -- that is, having FL get worse or come back within 12 months was a sign that Overall Survival was lower than with other patients).
The results (after a median follow-up of just under 5 years) --
For patients given R + chemo, low Vitamin D levels were associated with lower Overall Survival, Lymphoma Specific Survival, and EFS12.
For patients who watched and waited, low Vitamin D levels were associated with lower Overall Survival, but not EFS12. Lymphoma Specific Survival could not be calculated.
For patients given just Rituxan, low Vitamin D levels were NOT associated with lower EFS12, and Overall Survival and Lymphoma Specific Survival could not be calculated.
When all patients receiving any kind of Rituxan treatment were lumped together, low Vitamin D was associated with all three -- lower OS, LSS, and EFS12.
The researchers are careful to say that more research needs to be done to confirm all of this, though they are especially hopeful that the study can help patients with low EFS12. While different studies have shown that low EFS at 12 or 24 or 30 months can predict low Overall Survival, the challenge is finding a treatment that can help those FL patients with an aggressive form of the disease. Maybe low Vitamin D levels are one way to help?
There are no easy answers here, as the calls for more research demonstrate.
But from my perspective as a patient, I would say that asking your doctor about your Vitamin D levels is probably a good idea. My own doctor (my regular doctor, not my oncologist) had me start to take Vitamin D supplements many years ago, and I continue to take them. She thought D levels were important for lots of reasons (none of them related to Follicular Lymphoma). Did my good D levels help when I took Rituxan? Have they helped me not need treatment since then?
Who knows? Follicular Lymphoma is a funny disease, and it goes down such a strange path that it's hard to know if any of the things we do (aside from actual treatments) have any effect. Follicular Lymphoma is like a toddler on a walk through the woods. It runs ahead sometimes, then stops and looks at bugs, then walks back in the direction it started, then lies down and cries in the grass, then walks ahead again. Same with FL, with its slow progression, waxing and waning, speeding up a little and slowing down again. We really can't know if our diet or exercise routine or supplement regiment is really doing anything for us. We really can't put our hope in something we can buy from a grocery store.
That said, ask your doctor about Vitamin D. It's worth having that conversation.
Let's go back a couple of years first. In 2015, the Journal of Clinical Oncology published a study on Vitamin D and FL that said low blood levels of D were associated with lower Overall Survival in patients who had been given Immunochemotherapy (Rituxan or RIT + CHOP). There were lots of alarming headlines in the cancer media about the study, and is the case too often, many of them misrepresented what the study actually said. I wrote about it in the blog -- the study's conclusion said "serum vitamin D might be the first potentially modifiable factor to be associated with FL survival." Might be. It was an interesting study that called for more research before we could know for sure.
The Blood Cancer Journal study gives us some of that research. But let's get this out there right away -- even these researchers say we need more research ("Further investigations are needed to determine whether outcomes could be improved in FL by supplementation with this readily available vitamin.")
I know I haven't even gotten to what's in the research yet, but I think it's really important to make sure, near the beginning of this post, to remind everyone to not jump to conclusions. I've been reading a lot of stuff online lately where people are taking small bits of information about cancer and making them into Big Things that they aren't. This study isn't saying Vitamin D will cure your cancer. I want to be clear about that.
So, about that research.
The researchers looked at 642 Follicular Lymphoma patients who were enrolled in the study between 2002 and 2012. Unlike the earlier JCO study, which looked only at patients who were given R or RIT + CHOP, the patients in this study had a number of different treatments, including R + chemo (CHOP, CVP or Bendamustine), but also straight Rituxan, watch and wait, and other treatments (which they don't list separately). That range of treatments is important, given that there really isn't a standard treatment for FL.
The researchers measured whether low Vitamin D levels had an effect on Overall Survival, Lymphoma-Specific Survival (whether lymphoma was the cause of death), and EFS12, or Event Free Survival at 12 months (this same research team had found that EFS12 was a predictor of Overall Survival -- that is, having FL get worse or come back within 12 months was a sign that Overall Survival was lower than with other patients).
The results (after a median follow-up of just under 5 years) --
For patients given R + chemo, low Vitamin D levels were associated with lower Overall Survival, Lymphoma Specific Survival, and EFS12.
For patients who watched and waited, low Vitamin D levels were associated with lower Overall Survival, but not EFS12. Lymphoma Specific Survival could not be calculated.
For patients given just Rituxan, low Vitamin D levels were NOT associated with lower EFS12, and Overall Survival and Lymphoma Specific Survival could not be calculated.
When all patients receiving any kind of Rituxan treatment were lumped together, low Vitamin D was associated with all three -- lower OS, LSS, and EFS12.
The researchers are careful to say that more research needs to be done to confirm all of this, though they are especially hopeful that the study can help patients with low EFS12. While different studies have shown that low EFS at 12 or 24 or 30 months can predict low Overall Survival, the challenge is finding a treatment that can help those FL patients with an aggressive form of the disease. Maybe low Vitamin D levels are one way to help?
There are no easy answers here, as the calls for more research demonstrate.
But from my perspective as a patient, I would say that asking your doctor about your Vitamin D levels is probably a good idea. My own doctor (my regular doctor, not my oncologist) had me start to take Vitamin D supplements many years ago, and I continue to take them. She thought D levels were important for lots of reasons (none of them related to Follicular Lymphoma). Did my good D levels help when I took Rituxan? Have they helped me not need treatment since then?
Who knows? Follicular Lymphoma is a funny disease, and it goes down such a strange path that it's hard to know if any of the things we do (aside from actual treatments) have any effect. Follicular Lymphoma is like a toddler on a walk through the woods. It runs ahead sometimes, then stops and looks at bugs, then walks back in the direction it started, then lies down and cries in the grass, then walks ahead again. Same with FL, with its slow progression, waxing and waning, speeding up a little and slowing down again. We really can't know if our diet or exercise routine or supplement regiment is really doing anything for us. We really can't put our hope in something we can buy from a grocery store.
That said, ask your doctor about Vitamin D. It's worth having that conversation.
Friday, September 1, 2017
CAR-T Approval
Some really excellent news yesterday, one of those stories that's all over the internet, and not just getting talked about in the Lymphoma community --
The FDA approved the first CAR-T treatment. This is a big deal. It's a real victory for Immunotherapy -- using the body's own immune system to fight cancer.
Just a quick reminder of what CAR-T is. First, it stands for Chimeric Antigen Receptor T cell therapy. Basically, what happens is T cells are removed from the body. T cells are types of immune cells -- they attack invaders. But not cancer cells, which find ways to make T cells ignore them.
After the T cells are removed, they are changed so they DO recognize cancer cells as bad guys. They are put back into the body, and then the changed T cells attack the cancer cells. The treatment is personalized -- only the patient who had them removed and changed will benefit from having them put back.
(Dana Farber Cancer Institute has a nice article explaining how it works, with a very helpful video.)
The new treatment is called Kymriah, though in clinical trials it was called CTL019 or Tisagenlecleucel. It has been approved for pediatric and adult Acute Lymphoblastic Leukemia, a very aggressive type of blood cancer. Another CAR-T treatment is under review for aggressive lymphomas, including transformed Follicular Lymphoma.
How big a deal is this? I'll let Ben tell you. He runs the blog CAR-T and Follicular Non-Hodgkin's Lymphoma, with help from William -- both are active readers of Lympho Bob, and their blog does an excellent job of keeping up with new developments in the CAR-T world. Ben is a Follicular Lymphoma patient who received CAR-T, and William's wife is also a CAR-T patient with FL. Ben called it "Truly a momentous day in the long and winding history of this life-saving therapy," and he is "Excited to finally see it becoming more widely available to many more patients."
But Ben also points out that there is a high price tag for this treatment -- about $475,000, making it one of the most expensive cancer treatments ever. The company that makes it has responded to criticism about the price by saying that it is an expensive process -- each patient gets their own personalized treatment. They have also said that any patient who doesn't get a Response within a month will not have to pay for the treatment. (Of course, if the treatment fails on day 45, you're out of luck -- in a couple of ways.)
The treatment has been very effective in trials, but it certainly is not without risks. The biggest of these is cytokine release syndrome, a response from the body to all of those T cells that results in possible fever and brain swelling. One patient in the Lymphoma trial died from this side effect.
Still, the overall news is very positive, and the approval for Kymriah is considered a positive sign for KTE-C19, the Lymphoma CAR-T treatment. It will be interesting to see how many more cancers get a CAR-T treatment, or if the cost will discourage patients and doctors, and thus pharmaceutical companies. But if not, this could be big news for all three.
And I'm always in favor of more options for us as patients.
The FDA approved the first CAR-T treatment. This is a big deal. It's a real victory for Immunotherapy -- using the body's own immune system to fight cancer.
Just a quick reminder of what CAR-T is. First, it stands for Chimeric Antigen Receptor T cell therapy. Basically, what happens is T cells are removed from the body. T cells are types of immune cells -- they attack invaders. But not cancer cells, which find ways to make T cells ignore them.
After the T cells are removed, they are changed so they DO recognize cancer cells as bad guys. They are put back into the body, and then the changed T cells attack the cancer cells. The treatment is personalized -- only the patient who had them removed and changed will benefit from having them put back.
(Dana Farber Cancer Institute has a nice article explaining how it works, with a very helpful video.)
The new treatment is called Kymriah, though in clinical trials it was called CTL019 or Tisagenlecleucel. It has been approved for pediatric and adult Acute Lymphoblastic Leukemia, a very aggressive type of blood cancer. Another CAR-T treatment is under review for aggressive lymphomas, including transformed Follicular Lymphoma.
How big a deal is this? I'll let Ben tell you. He runs the blog CAR-T and Follicular Non-Hodgkin's Lymphoma, with help from William -- both are active readers of Lympho Bob, and their blog does an excellent job of keeping up with new developments in the CAR-T world. Ben is a Follicular Lymphoma patient who received CAR-T, and William's wife is also a CAR-T patient with FL. Ben called it "Truly a momentous day in the long and winding history of this life-saving therapy," and he is "Excited to finally see it becoming more widely available to many more patients."
But Ben also points out that there is a high price tag for this treatment -- about $475,000, making it one of the most expensive cancer treatments ever. The company that makes it has responded to criticism about the price by saying that it is an expensive process -- each patient gets their own personalized treatment. They have also said that any patient who doesn't get a Response within a month will not have to pay for the treatment. (Of course, if the treatment fails on day 45, you're out of luck -- in a couple of ways.)
The treatment has been very effective in trials, but it certainly is not without risks. The biggest of these is cytokine release syndrome, a response from the body to all of those T cells that results in possible fever and brain swelling. One patient in the Lymphoma trial died from this side effect.
Still, the overall news is very positive, and the approval for Kymriah is considered a positive sign for KTE-C19, the Lymphoma CAR-T treatment. It will be interesting to see how many more cancers get a CAR-T treatment, or if the cost will discourage patients and doctors, and thus pharmaceutical companies. But if not, this could be big news for all three.
And I'm always in favor of more options for us as patients.
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