The Current State of CAR-T and Bispecifics for FL

Great article a couple of weeks ago from the journal Blood Advances, which is published by the folks at ASH. The article is called "The rules of T-cell engagement: Current state of CAR T cells and bispecific antibodies in B-cell lymphomas." 

This isn't giving a description of original research. It's one of those "Here's where we stand today" articles that sums up everything that's happening with a topic. In this case, it's looking at two types of treatments, CAR-T and bispecific antibodies.

If you've been a regular reader lately, you know that, at least in my view, the these are the two treatment types that get lymphoma oncologists/hematologists most excited. They have been around for a few years, so their effectiveness is pretty well-known. And there is more and more research happening to improve them in different ways, whether by finding new targets for them or reducing their side effects.

A quick reminder: CAR-T stands for Chimeric Antigen Receptor–modified T cells. CAR-T works by removing some of a patient's T cells (a type of immune cell) and changing them in a laboratory so they more easily recognize cancer cells. Then they are put back into the body and allowed to do their job. It's been a very successful treatment for many (though not all) patients. CAR-T can have some severe side effects, though as CAR-T is used more, oncologists are getting better at identifying them and trying to manage them.

Bispecifics are different. They are made up of two parts (that's why they are called "bi," meaning "two." One part seeks out a protein found on the surface of a B cell, similar to what Rituxan does. But the other part seeks out a protein on a T cell (there's that immune cell again). By bringing the T cell next to the cancer cell, it allows the T cell to eliminate it. This also can have some serious side effects, and has also been very successful for many (but not all) patients.

The article provides some of this background, but also looks specifically at which CAR-T and bispecific treatments have been approved for use with certain types of lymphoma. Of course, Follicular Lymphoma is one of those types, which is why I'm writing about it.

As the chart from the article shows, there are three CAR-T treatments approved for FL (at least in the U.S.) -- known as Axi-cel, Tisa-cel, and Liso-cel. And there are two bispecifics currently approved -- Mosunetuzumab and Epcoritamab. The chart shows which line of treatment they have been approved for (it's third line or later for all five of them, at least for now), gives some data about effectiveness (the Overall and Complete Response Rates), and some information about safety (the percentage of patients who experienced particular side effects).

It's a really nice chart (if you're into that kind of thing. And I am.)

There's also a bit of a longer discussion for each of the different types of lymphoma, and the section on FL is very interesting. 

The authors talk a little bit about sequencing of treatments. For advanced or bulky disease, they usually go with immuno-chemotherapy (something like R-CHOP or B-R, I assume), if that seems appropriate for the patient. They typically go for R-squared (Lenalidomide + Rituxan) for a second treatment. And then they express their happiness that CAR-T and bispecifics are now available for a third line, which have greatly increased the options that patients have.

I appreciate their careful discussion of third-line treatment decisions. As they say, neither CAR-T nor bispecifics are shown to cure FL, so patient choice becomes very important. And there are lots of factors to consider, from cost (CAR-T is much higher) to side effects and quality of life. They also mention that younger patients might prefer CAR-T, since there is a greater chance of it being a "one and done" treatment. Patients who have transformed might also prefer CAR-T, since it is very effective against transformed FL.

Finally, the article describes some of the current and future research happening with CAR-T and bispecifics. This includes using either of them in combination with other treatments, using bispecifics after CAR-T as a type of maintenance, and using either of them as a first or second line treatment.

As I said, it's a good article in that it brings a lot of stuff together in one place, and it's clear why these two are so exciting. I don't have a sense of whether there are other types of lymphoma treatments being developed that also use T cells to go after B lymphocytes, but my guess is that with the success of these two treatments, there are plenty of ambitious and innovative researchers who are looking.

The bottom line is, once again, that we have options, and there are more coming. That should make us all a little bit happier.

Talking to Other FL Patients

I had the chance to talk with some other Follicular Lymphoma patients today. I won't get into details of the event, to protect everyone's privacy. But we had a chance to talk about circumstances and experience and give our opinion on some relevant things.

Two things that I came away with after the meeting.

First, I always feel a little glow when I'm in a situation like this. It's strange -- as much as I hate to revisit some of the worst parts of my cancer experience, it also feels good to hear that someone else has felt or experienced the same thing. Cancer can be a lonely experience, and there's a kind of spiritual connection between people who have heard those words, "You have cancer." I wish there were other ways to feel that connection with the nice people I spoke with today, but the connection is there anyway.

At the same time, it's also hard to not feel something else -- guilt or jealousy, I suppose, depending on the circumstances. One of the people I talked to has been through a couple of rounds of aggressive treatment and is still feeling the effects. Another has been watching and waiting for several years, and senses that treatment might be necessary very soon. No FL situation is good, though it's hard not to compare your own circumstances with someone else's and feel good or bad about it.

I think guilt is a very real emotion for a lot of us. I've written about this before, and I think it happens even more these days as there are more places for us to connect with other patients online and compare our experiences. Some folks really do have a tough time. I've been lucky, I know, to have had a pretty stable disease after all these years. It's not the path that was presented to me when I was first diagnosed all those years ago. Back then, I was told to expect to have multiple treatments, and to have the disease come back sooner and more aggressively than before. It hasn't.

And I do feel some guilt about that every now and then. Not so much because of what my experience is. More because I am sometimes considered to be a representative of the larger FL community. I'm always listening, and I have a good sense of what other FL patients have gone through and are feeling now. But sometimes when I talk to another patient who has been through a lot more than me, I become to same fool that doesn't know what to say to someone with cancer, and I say the wrong thing. I didn't today, than goodness. But it happens. With a disease that presents itself in such a wide variety of ways, it's impossible to find someone whose experience is the exact same as ours. There's always someone worse off, and always someone better off.

And so -- guilt or jealousy. 

I hope you're not feeling that way yourselves, but if you are, know you aren't alone. (There -- that good feeling of connecting with other patients with FL.)

So it's been an emotional day. Believe it or not, as I feel guilt for having it better than some, I am actually leaving soon to head to a shelter for the homeless to cook dinner for 100 people. My wife has been doing it for about 12 years, and I've joined her for the last year or so. Another reminder that I am fortunate. But I also get to hear how much they love my macaroni and cheese, which is always a hit. 

I wasn't going to write about this, but it's Lymphoma Awareness Month, and the Lymphoma Coalition wants us to talk about how we're feeling. So now you know what's on my mind.

Have a great day, everyone. Stay well.

Yale Cancer Answers: Lymphoma and Quality of Care

Happy World Lymphoma Day! I've already mentioned that this is Lymphoma Awareness Month, but today is officially the day dedicated to Lymphoma Awareness. 

The Lymphoma Coalition, which is a world-wide group of national Lymphoma advocacy groups from many different countries, points out this this is the 20th year that they are sponsoring this day. Their theme for this year is "Honest Talk: It's Time for Some Honest Talk about How We're Feeling." They want to focus this year on the emotional aspects of being a patient with lymphoma.

If you've been reading for a while, you know how I feel about this. As I like to say, with Follicular Lymphoma, many of us are asymptomatic or have symptoms that are stable. So for those patients, it's more about (or just as much as) dealing with emotional side effects as it is about physical side effects.

The Lymphoma Coalition offers some resources and suggestions for starting a conversation about being a patient. It can be awkward. As many of you probably know, sometimes people don't want to talk about it -- including the patients themselves. But talking can be a huge help. 

Take a look at what the Lymphoma Coalition suggests.

For this Awareness Day, I want to share a link to a recent broadcast of Yale Cancer Answers. This is a weekly radio show on a local station, sponsored by Yale Smilow Cancer Hospital, and features interviews with folks from the hospital and from Yale medical school talking about issues related to cancer. The topics range from the latest in individual cancer types to broader issues like financial toxicity or healthy eating. Yale Smilow is my cancer center, so I'm particularly interested in the show, and I check n often to see if they have done an episode that I can relate to.

The episode I want to link to is called "Improving Quality of Care," featuring an interview with Dr. Scott Huntington. Dr. Huntington is a Lymphoma specialist, and the first half of the interview focuses on his work as a hematologist. He gives some basic information about Lymphoma and about current treatments, especially CAR-T. He recognizes how important CAR-T has become, but also that it is imperfect. As much as we hope to improve first-line treatments for lymphomas (not just FL), for now, CAR-T seems most useful as a "back up" for initial treatments, especially for more aggressive Lymphoma types.

He also touches on Survivorship issues, something that I am obviously more and more interested in lately. He points out in particular that cancer survivors need t pay more attention to things like heart-related issues and making sure to do cancer screenings that are age-appropriate. 

The second half of the interview focuses on quality of care (Dr. Huntington is the Chief Quality Officer for the hospital, so his job is to evaluate and improve the way care is given to patients.)

One of the issues that he discusses is how Guidelines are created to make sure patients get quality care. There are groups like NCCN (the National Comprehensive Cancer Network) that use data to make sure the best care decisions are being recommended.

However, as good as those guidelines might be, each individual patient is different, and their disease, their circumstances, and their desires must all be taken into account. 

The conversation turned to what the quality of care might look like five years from now. Dr. Huntington talked about electronic health records. For now, they're useful to us as individuals. But maybe soon, all of that data could be useful to researchers -- going through thousands of electronic records can show patterns that might help improve care. Same with the feedback we give as patients, through our phones or our portals. Or maybe more of us use wearable devices, and that data helps doctors see where we are having problems (more accurately than we might report it at a visit to the doctor). It's interesting to think about. But it seems inevitable that technology will play a bigger role in our lives as patients in just a few years.

So I encourage you to listen to the radio show/podcast, and browse through the others to see if there are topics that might interest you. It'd all very much for a general audience, not experts (unlike some other things I link to), with good practical advice.

And enjoy World Lymphoma Day today (or, if you're reading this later, enjoy THAT day). Have some ice cream or some other treat. Or take a walk. Or read a book. But do something that makes you happy. It's your day today.

Upcoming Events

There are a few events coming up that I thought many of you might like to know about.

The first is from the Follicular Lymphoma Foundation. It's a webinar called "Relapsed Follicular Lymphoma: Essential Insights." It's happening on Thursday, September 26, at 1:30pm Eastern Time (US and Canada). As the name suggests, the webinar will focus on relapsed FL -- the latest treatment, how to identify possible signs of relapse. And there will be a question-and-answer period, too. The speakers look fantastic -- Dr. Mitchell Smith, the Chief Medical Officer of the Foundation; Dr. Philippe Armand, head of the Lymphoma program at Dana-Farber in Boston; and Andrew MacAslan, an FL patient and advocate, who was diagnosed with FL at 25 years old. You can read more about the speakers here, and register for the webinar, too. 

As I've said before, given the nature of the disease, most of us should be aware of what happens if we relapse after treatment. We won't all need a second treatment any time soon. I'm still feeling lucky that I've gotten almost 15 years out of my first treatment. But I regularly talk to my oncologist about what happens next, if I do need treatment -- what we might try, what my goals might be, what clinical trials are available at my cancer center. So I think a webinar like this is good for everyone, and the FLF does a nice job with their webinars.

And so does the Lymphoma Research Foundation. Their next webinar that might be of interest to FL patients is called "Update on Chimeric Antigen Receptor (CAR) T-cell Therapy." You have a while for this one -- it's happening October 23 at 3:00pm Eastern Time (US and Canada). The speaker for this webinar is Dr. Jerry Abramson, who is the head of the Lymphoma program at Massachusetts General Hospital in Boston. (As someone who was born in Boston, I have to say I am really pleased to see my beloved city represented by both organizations. Go Red Sox!)

This should also be a very interesting webinar. It will cover some basics about CAR-T, when to consider taking it (and the importance of talking about it as early as possible), side effects, and follow-up care. Dr. Abramson is an expert on CAR-T. If you want to hear a little bit about what he thinks about the treatment, you can watch a short (2 minute) video here. He's excited about the possibilities.

The LRF also did a webinar last week on "Understanding Diagnostic and Biomarker Testing." I wasn't able to attend, but they should have a recording of it up soon. Check back at this link.

The LRF also has their annual in-person Educational Forum happening in New York, October 26-27. It's a major event, with lots happening. When they post the final schedule for it, I'll be sure to put up a link.

But for now, mark your calendars for the Follicular Lymphoma Foundation event. I'll definitely be tuning in for that one.

Caring for Your Heart

I used to subscribe to the Journal of the American Medical Association, and I still have access to some of the content from JAMA and  some of its specialty journals (like JAMA Oncology). 

The JAMA Oncology journal has something called the "Patient Page," with interesting information aimed at patients with cancer. I'm not sure how many patients actually see these pages, since they appear in the medical journal. Maybe there are oncologists who share the information with patients? I have no idea.

Which is too bad, because the information can be useful.

The most recent Patient Page, for example, is called "Caring for Your Heart During Cancer Treatment."

It's valuable information, getting at what cardio-oncology is -- a cardiologist to look after your heart along with the oncologist looking after your cancer. And it lists some of the heart problems that can happen while receiving cancer treatment.  Some of those problems include:

Cardiomyopathy (damage to the heart muscle)

Arrhythmias (heart beating too fast or too slow or too irregularly)

Pericardial disease (problems with the pericardium, which covers the heart)

Hypertension (high blood pressure)

Thromboembolic events (blood clots)

Myocardial ischemia (reduced blood flow to the heart)

Valvular dysfunction (problems with the valves that control blood flowing through the heart)

Vascular toxic effects (damage to blood vessels).

 Not every cancer treatment results in cardiac problems. For example, some of the elements of CHOP can cause heart issues (which is why you can only receive it once, and so many oncologists will reserve it for aggressive or transformed lymphoma). 

The Patient Page also gives some advice for how to take care of your heart before you receive treatment. Controlling high blood pressure and high cholesterol, for example, before treatment can help lower the risk of heart problems that the treatment could bring on.

I think that's a weakness of this Patient Page, though. How many of us think about controlling heart problems on the off chance that we get cancer some day?

Of course, for those of us in the Follicular Lymphoma community, that's a little different. Some us watch and wait before we get treatment, and that can give us an opportunity to improve our health (our hearts and our overall health) before we need treatment. Similarly, for those of us who might need a second or third treatment after some time, that interval also gives us the chance to improve our health. (Assuming the treatment has allowed us the ability to do those things.)

One other weakness of this Patient Page - it doesn't talk about long-term side effects that come with cancer treatment. Many patients end up with heart-related issues sometime after the treatment has been finished. As I have been saying lately, that's a survivorship issue. When the treatment is "finished," some patients feel like they have been abandoned. I would have liked to have seen at least a mention of that issue. Even if we aren't in active treatment, heart problems can come up. It's something we should all be aware of and look out for.

The larger issue here is that heart-related problems need to be paid attention to -- before, during, and after cancer treatment.

This is a good time to remind you that I am not an oncologist or a cancer researcher. I'm just a patient who reads a lot.

That means that most importantly, this is an issue that you should discuss with your oncologist, not matter where you are on that treatment time line (before, during, or after).  If a cardio-oncology team seems appropriate, it should maybe be put in lace as soon as possible after diagnosis. But at the very least, when it comes time to have discussions with your doctor about possible treatments, there needs to be a discussion about the short-term and long-term physical side effects of the treatments your doctor is recommending.

All of this is just another reminder for me of how much cancer affects our lives, even before treatment.

Take care of yourselves.

 

Lymphoma Awareness Month

Today is the first day of Lymphoma Awareness Month -- and/or Non-Hodgkin's Lymphoma Awareness Month, Lymphoma and Leukemia Awareness Month, and Blood Cancer Awareness Month, depending on who is trying to make you aware. 

But whatever you call it, September is the month that is set aside for us to be more aware of our disease.

I always have the same reaction to this month, something like "I am very aware of my lymphoma, thank you. I literally think about it every day, even after 16 years."

And then I remind myself that awareness months like this aren't meant for us as patients. They are meant for others. Perhaps making others aware of lymphoma will help them recognize possible symptoms and catch a possible diagnosis early. Lymphoma Canada does this with their "Know Your Nodes" Quiz. Try it and see how well you do, then share it with others.

Or maybe the awareness is about getting people to be advocates, raising money for research or asking elected officials to make sure cancer research is adequately funded. 

You can wear your ribbon and let others now what it means and why it's important. I always think of Lime Green as my awareness ribbon color (which is why the banner at the top of the blog is lime green, even though google keeps suggesting I use an updated design for the page). But is lime green actually "our" color? I wrote about this a few years ago for Blood-Cancer.org in a piece called "My Cancer Rainbow" (and honestly, it's one of my favorites -- it was really fun to write). 

Lymphoma Awareness Month (or whatever you want to call it) really is about making others aware. 

But at the same time, we really shouldn't ignore how important it is for us to be aware, even though we're living with it every day. In some ways, the "know your nodes" and other symptom-related stuff doesn't matter as much (although it sure matters if you've already had treatment or you're watching and waiting, which covers most of us).

Being aware also means knowing that it's OK to feel a certain way, to have certain emotions. That means talking and listening to other patients and understanding that you're not alone. 

It also means knowing what resources are available to you if and when you need help -- the kinds of survivorship support that might be at your cancer center. Social workers, dieticians, trainers, massage therapists, yoga teachers. They may be there for you -- if you're aware of them.

Awareness also means knowing what treatments are available if you ever need them, and what they might involve. That takes a little work, but it's worth it.

An anonymous reader posted a comment a few days on my post describing my latest oncology appointment. The comment said, "I am an attorney and educated clients make my job easier, not harder. Stay strong in your knowledge. They are lucky to have you as their patient." 

I'm sure they are right about attorneys, and they are right about doctors. And that's probably true of any profession -- accountants probably like clients who know at least a little something about taxes. Teachers like it when students do their homework and are interested in the subject. 

And even if it makes our doctors' jobs easier, it's more important that awareness makes our own lives easier.  There are definitely times when I wish I didn't have to think about lymphoma so much. And there are plenty of patients who stop thinking about it and just try to forget that they have the disease. And if that helps them, good for them. They should do what works for them.

But if you're reading this, you're still at a point where you want to keep thinking about it. Good for you. Stay aware.

And be sure to celebrate Lymphoma Awareness Month. (Or Lymphoma Awareness Day, which is September 15th.) Have some ice cream. And stay aware.