The FDA has given Abexinostat a Fast Track designation for fourth-line treatment of Follicular Lymphoma.
Let's break that all down.
Abexinostat is an HDAC Inhibitor. Like all inhibitors, it works on cancer cells by stopping (or inhibiting) some process that's necessary for the cancer cell to grow and survive.
In this case, it inhibits HDAC, or Histone Deacatylase enzymes. These enzmyes are important for cell growth because they help arrange which parts of the cell control its growth. One of HDAC's jobs is to control the genes that allow cells to keep growing. By inhibiting HDAC, Abexinostat can help control cells that are otherwise out of control (and become cancer cells). There are other HDAC inhibitors being tested, but Abexinostat is different because it is given more frequently than others, and so can work on cancer cells continuously.
The trial that led to the designation is a phase 2 trial of 87 patients with a few different types of Lymphoma. The Overall response rate for the group was 28%, but for the smaller group of Follicular Lymphoma patients, the Response rate was 56%. Side effects were common, with 80% of patients in the trial having thrombocytopenia (low platelet counts), along with other nerve and blood count issues that often come with Lymphoma treatments.
The designation will be for fourth-line patients, which means, if it is approved, patients will need to have received three other treatments already.
The Fast Track designation by the FDA means the treatment will be handled a little differently than a regular FDA approval, like more frequent meetings with the FDA. It doesn't mean that the treatment will be approved faster, though the extra help from the FDA may move that along. Fast rack status is given to treatments that meet an unmet need, and that work on diseases that can become fatal without proper treatment.
I have to say, I'm not really excited about this one -- not yet, anyway. Fast Track status sounds like it should be really exciting, but it also signals that it's still pretty early in the process. The results we see are from a phase 2 study, which is always pretty small. But this is also a small group within a small study -- only 18 FL patients. And 56% percent is good, but it's also for Overall Responses, not Complete responses. And those side effects are not much of improvement over other treatments.
But it got FDA Fast track, so there must be some promise in it, right?
It's early. I try to keep my enthusiasm down for early studies. And if this goes to a larger phase 3 study, and there are even better results, then I'll start to break out a Happy Dance.
For now, we'll go with cautious optimism, and keeping an eye on this to see how it goes.
Friday, September 27, 2019
Saturday, September 21, 2019
Cancer Heroes
The organization Survivor Journeys is looking for cancer heroes.
They are asking for nominees for their cancer survivors event: "Do you have a friend or family member who has had or is still having an inspirational journey? What would you like people to know about this person’s story and the courage (s)he has shown in the face of a cancer diagnosis? How does that person inspire you?"
Nominations are due October 14. The forms can be found here. Nominees will be recognized at an event on November 21.
Now, I get the sense that this is mostly a local or regional thing. I don't imagine too many people will be traveling too far if they have been nominated.
However, the nomination form starts with "Anyone is eligible" (and they are the ones who underlined it), so I think it's worth it for anyone to send in a nomination. Think about those cancer patients who survivors you know who have inspired you. Think about the people in your support groups who always pick you up. Caregivers, nominate your loved ones.
Here's why I think it's worth it. So many of us focus on our lives as patients that we forget that we can be models for others. There's a feeling of helplessness that can come with a cancer diagnosis. We focus on getting well, and then on staying well. But we don't realize that others see us going through the things we go through.
Even at our lowest point, we could be (and probably are) an inspiration for someone else. Sometimes just getting through the day makes you an inspiration to someone else -- a hero. We don't see that ourselves, as we fight fatigue and pain and emotional issues. But others do.
But we rarely say it - "You're a hero!" -- to others.
And if we hear it -- "You're an inspiration!" -- we rarely believe it.
So maybe hearing from some outside group that you are an inspiration or a hero will actually make someone believe it.
It looks like the form takes maybe 10 minutes to fill out. Surely you can find 10 minutes to make someone's day.
They are asking for nominees for their cancer survivors event: "Do you have a friend or family member who has had or is still having an inspirational journey? What would you like people to know about this person’s story and the courage (s)he has shown in the face of a cancer diagnosis? How does that person inspire you?"
Nominations are due October 14. The forms can be found here. Nominees will be recognized at an event on November 21.
Now, I get the sense that this is mostly a local or regional thing. I don't imagine too many people will be traveling too far if they have been nominated.
However, the nomination form starts with "Anyone is eligible" (and they are the ones who underlined it), so I think it's worth it for anyone to send in a nomination. Think about those cancer patients who survivors you know who have inspired you. Think about the people in your support groups who always pick you up. Caregivers, nominate your loved ones.
Here's why I think it's worth it. So many of us focus on our lives as patients that we forget that we can be models for others. There's a feeling of helplessness that can come with a cancer diagnosis. We focus on getting well, and then on staying well. But we don't realize that others see us going through the things we go through.
Even at our lowest point, we could be (and probably are) an inspiration for someone else. Sometimes just getting through the day makes you an inspiration to someone else -- a hero. We don't see that ourselves, as we fight fatigue and pain and emotional issues. But others do.
But we rarely say it - "You're a hero!" -- to others.
And if we hear it -- "You're an inspiration!" -- we rarely believe it.
So maybe hearing from some outside group that you are an inspiration or a hero will actually make someone believe it.
It looks like the form takes maybe 10 minutes to fill out. Surely you can find 10 minutes to make someone's day.
Tuesday, September 17, 2019
Management of Follicular Lymphoma (OncLive)
The website OncLive has another of its excellent video series. For these series, they ask a panel of experts to talk about the most recent developments in FL.
This series is called "Management of Follicular Lymphoma" and it features Dr. Ian Flinn from the Sarah Cannon Research Institute in Nashville, Dr. Matthew Lunning from the University of Nebraska Medical Center, Dr. John Pagel from the Swedish Cancer Institute in Seattle, Washington, and Dr. Pier Luigi Zinzani from the University of Bologna in Bologna, Italy. An excellent lineup.
The series is made up of 14 videos, each about 5 minutes long (give or take a minute or so). That's a lot of time, but it's worth it. They definitely get into the topic, and give a lot of good, up-to-date information about Follicular Lymphoma.
I'm not going to get into every one of the videos, but there are some highlights worth mentioning.
The opening video is called "Diagnosis of Follicular Lymphoma." As you can probably guess, it looks at what happens at diagnosis -- staging and grading and scanning. It gets into some of the choices that doctors and patients can make at that point.
The last video is called "Looking Ahead in Treating Follicular Lymphoma." And, of course, it gets into where FL treatment is going in the future.
And in between, the panel discusses issues such as maintenance, R-Squared, kinase inhibitors, and strategies for sequencing treatments.
As always, these kinds of "where we are" sites don't necessarily tell us something new. But they are helpful in putting all we know into one place, and giving us a chance to hear experts talk about some of the controversies that affect us.
And the lesson of it all -- even with some of the controversies -- is that we have lots to be hopeful about. There are lots of treatments out there, and more in the pipeline. And that's a great thing.
This series is called "Management of Follicular Lymphoma" and it features Dr. Ian Flinn from the Sarah Cannon Research Institute in Nashville, Dr. Matthew Lunning from the University of Nebraska Medical Center, Dr. John Pagel from the Swedish Cancer Institute in Seattle, Washington, and Dr. Pier Luigi Zinzani from the University of Bologna in Bologna, Italy. An excellent lineup.
The series is made up of 14 videos, each about 5 minutes long (give or take a minute or so). That's a lot of time, but it's worth it. They definitely get into the topic, and give a lot of good, up-to-date information about Follicular Lymphoma.
I'm not going to get into every one of the videos, but there are some highlights worth mentioning.
The opening video is called "Diagnosis of Follicular Lymphoma." As you can probably guess, it looks at what happens at diagnosis -- staging and grading and scanning. It gets into some of the choices that doctors and patients can make at that point.
The last video is called "Looking Ahead in Treating Follicular Lymphoma." And, of course, it gets into where FL treatment is going in the future.
And in between, the panel discusses issues such as maintenance, R-Squared, kinase inhibitors, and strategies for sequencing treatments.
As always, these kinds of "where we are" sites don't necessarily tell us something new. But they are helpful in putting all we know into one place, and giving us a chance to hear experts talk about some of the controversies that affect us.
And the lesson of it all -- even with some of the controversies -- is that we have lots to be hopeful about. There are lots of treatments out there, and more in the pipeline. And that's a great thing.
Friday, September 13, 2019
World Lymphoma Awareness Day: September 15
I often post something on World Lymphoma Awareness Day, which is always September 15. I thought this year I'd get an early start. This will give you a little extra time to decide what you're going to do to raise awareness. (You're welcome.)
I wrote an article for Lymphoma News Today about awareness that came out today. I'd been thinking about my own strange relationship with "Lymphoma Awareness." I mean, I'm pretty aware of lymphoma. I read and write about it every day. Kind of hard not to be aware, right?
Lymphoma Awareness days and months are really for people without lymphoma. It's our chance to help them understand how common lymphoma is, and maybe inspire them to become more active in advocating for more money for cancer research. Or maybe in helping to get them to "know their nodes" and look for signs of lymphoma in their own bodies. But it's also a chance to help them really understand what life can be life for a lymphoma patient or survivor. That's what I'm trying to get across in the LNT article.
And when I say that I'm giving you a few days to decide what you're going to do to raise awareness, I'm not kidding. People won't know unless you tell them. If you're on Facebook, or Twitter, or Instagram, or Snapchat, or some other social media platform, that's a great place to spread some awareness. Change your profile picture to something lymphoma-related. Find an article that speaks to you and post it. Challenge people to take the "Know Your Nodes" quiz. Make them aware.
It doesn't have to be something big. In fact, the theme for World Lymphoma Day this year is "Small Things Build Confidence." The theme is a good reminder that if everyone does something small, together, it adds up to something big. A single Lymphoma Awareness profile picture on Facebook is good. A whole bunch of them is even better.
But the Lymphoma Awareness Day theme is aimed at patients, too. Research shows that when lymphoma patients stay informed, they grow more confident. And that's good -- our emotional and mental health should mean as much as our physical health when we have Follicular Lymphoma. If you're not up for sharing something about lymphoma with the rest of the world, that's OK. But make a pledge to yourself to become more aware. Learn something new about Follicular Lymphoma, even if you don't share it. If you're not up for doing some research, that's OK -- come back to this blog, go to a recent post, and click a link you haven't clicked before. Learning is good.
Whatever you do, I hope your September 15 is a good day for you. Treat yourself well. Take a nap. Have some ice cream or other favorite treat. Take a walk. Get and give a hug. Enjoy yourself.
And on the 16th, stay aware.
I wrote an article for Lymphoma News Today about awareness that came out today. I'd been thinking about my own strange relationship with "Lymphoma Awareness." I mean, I'm pretty aware of lymphoma. I read and write about it every day. Kind of hard not to be aware, right?
Lymphoma Awareness days and months are really for people without lymphoma. It's our chance to help them understand how common lymphoma is, and maybe inspire them to become more active in advocating for more money for cancer research. Or maybe in helping to get them to "know their nodes" and look for signs of lymphoma in their own bodies. But it's also a chance to help them really understand what life can be life for a lymphoma patient or survivor. That's what I'm trying to get across in the LNT article.
And when I say that I'm giving you a few days to decide what you're going to do to raise awareness, I'm not kidding. People won't know unless you tell them. If you're on Facebook, or Twitter, or Instagram, or Snapchat, or some other social media platform, that's a great place to spread some awareness. Change your profile picture to something lymphoma-related. Find an article that speaks to you and post it. Challenge people to take the "Know Your Nodes" quiz. Make them aware.
It doesn't have to be something big. In fact, the theme for World Lymphoma Day this year is "Small Things Build Confidence." The theme is a good reminder that if everyone does something small, together, it adds up to something big. A single Lymphoma Awareness profile picture on Facebook is good. A whole bunch of them is even better.
But the Lymphoma Awareness Day theme is aimed at patients, too. Research shows that when lymphoma patients stay informed, they grow more confident. And that's good -- our emotional and mental health should mean as much as our physical health when we have Follicular Lymphoma. If you're not up for sharing something about lymphoma with the rest of the world, that's OK. But make a pledge to yourself to become more aware. Learn something new about Follicular Lymphoma, even if you don't share it. If you're not up for doing some research, that's OK -- come back to this blog, go to a recent post, and click a link you haven't clicked before. Learning is good.
Whatever you do, I hope your September 15 is a good day for you. Treat yourself well. Take a nap. Have some ice cream or other favorite treat. Take a walk. Get and give a hug. Enjoy yourself.
And on the 16th, stay aware.
Sunday, September 8, 2019
Identifying POD24 in Follicular Lymphoma?
The Journal of Clinical Oncology just published "Progression of Disease Within 24 Months in Follicular Lymphoma Is Associated With Reduced Intratumoral Immune Infiltration." It has potentially important implication for some Follicular Lymphoma patients.
Some background first:
About 20% of Follicular Lymphoma patients are grouped as "POD24" (also known as EFS24, and by a couple of other names). "POD" stands for "Progression of Disease," and POD24 is short for patients who have had their disease progress within 24 months after receiving Immunochemotherapy (like R-CHOP or R-Bendmustine). EFS24, Event-Free Survival, is a very similar concept to POD, so the group of patients goes by that name, too.
(Patients who have had other treatments, like straight Rituxan, and who progress within 24 months, aren't part of this group. Anything related to POD24 or EFS24 doesn't apply to them.)
POD24 patients, unfortunately, have a lower overall survival than other FL patients who response to Immunochemotherapy lasts longer than 24 months. Unfortunately, there still isn't a way to predict whether a patient falls into this group. The only way to tell is to give Immunochemo and then wait 24 months. If doctors could tell who falls into that group, they may be able to give more aggressive therapy early on, or researchers can begin working on a treatment specifically for that group.
The JoC research may be a step in that direction. Researchers know that patients with solid tumors (a cancer other than a blood cancer) who have lower levels of Tumor Immune Infiltration tend to have earlier progression. Tumor Immune Infiltration refers to the levels of immune cells that are present inside a tumor. The body produces a lot of immune cells -- B cells, T cells, etc, -- that help fight ff invaders like viruses and bacteria. They usually don't fight off cancer cells because cancer isn't an invader -- it's our own cells, acting badly. However, researchers who looked at solid tumors found that when certain immune cells have penetrated the tumor, a high level of them usually meant a better outcome for the patient.
Using this knowledge, they looked for levels of immune cells to figure out if those levels were related to POD24. They looked at the presence of 12 immune molecules in the patients, and found that 6 were possibly related to POD24. To test the idea, they looked at 138 patients who had received the Immunochemo R-CVP, and 45 who had received R-CHOP.
In the end, they found one molecule that was very promising as a POD24 predictor -- PD-L2, Programmed Death Ligand 2. A "ligand" is a kind of cell that attaches to another cell. In this case, PD-L2 is on the surface of the cancer cell, and attaches to an immune cell, signalling to the immune cell that it should not attack the cancer cell. The body's immune response is lowered, and the cancer cells are safe.
So, to sum that all up: finding lots of immune cells in a tumor is a sign that a treatment is probably going to do a good job. In FL patients, if PD-L2 is found, there will be fewer immune cells, because the PD-L2 told them to stay away. So the response to treatment won't be as good.
The significance of this? If doctors find PD-L2, they can be ore aggressive in their treatment in hopes that the patient won't progress beyond 24 months. And researchers can find ways to inhibit PD-L2.
There have been lots of folks in the Lymphoma community in the last few years who have said that helping POD24/EFS24 patients is a priority. Identifying them was a great first step, and now finding biomarkers that let doctors know who is at risk as a great second step. Let's hope this researcher plays a part in that.
Some background first:
About 20% of Follicular Lymphoma patients are grouped as "POD24" (also known as EFS24, and by a couple of other names). "POD" stands for "Progression of Disease," and POD24 is short for patients who have had their disease progress within 24 months after receiving Immunochemotherapy (like R-CHOP or R-Bendmustine). EFS24, Event-Free Survival, is a very similar concept to POD, so the group of patients goes by that name, too.
(Patients who have had other treatments, like straight Rituxan, and who progress within 24 months, aren't part of this group. Anything related to POD24 or EFS24 doesn't apply to them.)
POD24 patients, unfortunately, have a lower overall survival than other FL patients who response to Immunochemotherapy lasts longer than 24 months. Unfortunately, there still isn't a way to predict whether a patient falls into this group. The only way to tell is to give Immunochemo and then wait 24 months. If doctors could tell who falls into that group, they may be able to give more aggressive therapy early on, or researchers can begin working on a treatment specifically for that group.
The JoC research may be a step in that direction. Researchers know that patients with solid tumors (a cancer other than a blood cancer) who have lower levels of Tumor Immune Infiltration tend to have earlier progression. Tumor Immune Infiltration refers to the levels of immune cells that are present inside a tumor. The body produces a lot of immune cells -- B cells, T cells, etc, -- that help fight ff invaders like viruses and bacteria. They usually don't fight off cancer cells because cancer isn't an invader -- it's our own cells, acting badly. However, researchers who looked at solid tumors found that when certain immune cells have penetrated the tumor, a high level of them usually meant a better outcome for the patient.
Using this knowledge, they looked for levels of immune cells to figure out if those levels were related to POD24. They looked at the presence of 12 immune molecules in the patients, and found that 6 were possibly related to POD24. To test the idea, they looked at 138 patients who had received the Immunochemo R-CVP, and 45 who had received R-CHOP.
In the end, they found one molecule that was very promising as a POD24 predictor -- PD-L2, Programmed Death Ligand 2. A "ligand" is a kind of cell that attaches to another cell. In this case, PD-L2 is on the surface of the cancer cell, and attaches to an immune cell, signalling to the immune cell that it should not attack the cancer cell. The body's immune response is lowered, and the cancer cells are safe.
So, to sum that all up: finding lots of immune cells in a tumor is a sign that a treatment is probably going to do a good job. In FL patients, if PD-L2 is found, there will be fewer immune cells, because the PD-L2 told them to stay away. So the response to treatment won't be as good.
The significance of this? If doctors find PD-L2, they can be ore aggressive in their treatment in hopes that the patient won't progress beyond 24 months. And researchers can find ways to inhibit PD-L2.
There have been lots of folks in the Lymphoma community in the last few years who have said that helping POD24/EFS24 patients is a priority. Identifying them was a great first step, and now finding biomarkers that let doctors know who is at risk as a great second step. Let's hope this researcher plays a part in that.
Tuesday, September 3, 2019
The Empty Nest
My wife and I are now "empty nesters."
Our three kids are all moved out -- even if it's temporary.
My oldest is 22 now. He's been in and out of the house for a few years, sometimes living at home, sometimes living on his own, depending on circumstances. We love to have him home, but he's on his own right now.
My middle kid is 20. We dropped him off at college about 10 days ago. He's a few hours away, but happy, and doing well.
And my youngest is 18. We dropped her off at college a few days ago. She seems happy, too. That makes us happy.
When I was diagnosed, they were 10, 8, and 6. It seems so long ago. There were times, especially early on, when I wasn't sure I'd see all of them out on there own, in college, being all grown up.
I've received a couple of bits of communication in the last few days.
Yesterday, I got a comment on a piece that I had written for another site. It was from someone who had been diagnosed very recently, looking for some hope, not sure if she'd see her grandkids graduate from high school and college. That brought back some not-too-pleasant memories. I did my best to make her feel better. I hope it helped.
And a few days ago, I got an email from a reader, giving me an update. He's young, and his life was really just starting when he got his diagnosis. But he's doing great all around -- healthy, with a good job, and a supportive girlfriend. I love getting updates like that.
So, of course, hearing from people at a time like this, when my kids are starting their own lives, and when I'm here to see them, brings up a whole lot of mixed feelings and memories and hopes and needs. I'm healthy enough to still be working at a job that I really like. I'm healthy enough to do some traveling with my wife (and we're open to suggestions for where in the world we should go).
Our nest is a little emptier, and a little quieter, at least for a few months, until the kids come back home again.
But I'm happy. And happy to be here to enjoy it.
Our three kids are all moved out -- even if it's temporary.
My oldest is 22 now. He's been in and out of the house for a few years, sometimes living at home, sometimes living on his own, depending on circumstances. We love to have him home, but he's on his own right now.
My middle kid is 20. We dropped him off at college about 10 days ago. He's a few hours away, but happy, and doing well.
And my youngest is 18. We dropped her off at college a few days ago. She seems happy, too. That makes us happy.
When I was diagnosed, they were 10, 8, and 6. It seems so long ago. There were times, especially early on, when I wasn't sure I'd see all of them out on there own, in college, being all grown up.
I've received a couple of bits of communication in the last few days.
Yesterday, I got a comment on a piece that I had written for another site. It was from someone who had been diagnosed very recently, looking for some hope, not sure if she'd see her grandkids graduate from high school and college. That brought back some not-too-pleasant memories. I did my best to make her feel better. I hope it helped.
And a few days ago, I got an email from a reader, giving me an update. He's young, and his life was really just starting when he got his diagnosis. But he's doing great all around -- healthy, with a good job, and a supportive girlfriend. I love getting updates like that.
So, of course, hearing from people at a time like this, when my kids are starting their own lives, and when I'm here to see them, brings up a whole lot of mixed feelings and memories and hopes and needs. I'm healthy enough to still be working at a job that I really like. I'm healthy enough to do some traveling with my wife (and we're open to suggestions for where in the world we should go).
Our nest is a little emptier, and a little quieter, at least for a few months, until the kids come back home again.
But I'm happy. And happy to be here to enjoy it.
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