FLF Patient Survey Results

The Follicular Lymphoma Foundation published the results of its recent survey of Follicular Lymphoma patients. The survey focused on immunotherapy and communication preferences. There are some really interesting results, even for someone like me who spends a lot of time thinking about FL.

The FLF, for those who don't know, is an organization with a global mission. They provide information and support for FL patients, including funding some important research. If you haven't been to their website, it's worth a visit.

Their global mission is reflected in the survey. They include results from 791 FL patients from 49 different countries. 

One question that they asked was which treatments the patients had received. Almost 60% had received some kind of chemotherapy. 18.2% had Rituxan or Obinutuzumab on their own. 6.2% had R-squared. And 19.5% had received some other treatment. That's always interesting to me, as someone who reads (and writes) about new treatments a lot. It's easy to think that traditional chemo must be on its way out. But even with newer possibilities, chemo remains not just one options, but the option for many patients. And of course, it's a very effective option for many patients.

Along those same lines, only 1.6% have received CAR-T and 2.9% have received bispecific antibodies. Those are very small percentages, given how much excitement there is around them.

Part of the issue is they are approved for a very small percentage of patients. And then there is the cost associated with something like CAR-T.

But this is all a very good reminder for myself that what I write about is often the future, and not the present. All of the excitement, all of the clinical trials, all of the research -- that might be the reality for us in the future. But right now, patients are much more likely to get chemo, or Rituxan, or even R-squared. They are the "standard of care." It's definitely worth understanding what kinds of treatments are out there, because not every oncologist will go to the newer stuff.

Along those lines, another interesting result from the survey -- respondents were asked to rate their awareness of immunotherapy from 1 to 5. The average was 2.16. The FLF says this result was pretty consistent no matter what country they came from. That's very low. There's a critical need for information among FL patients.

When asked which types of sources they found most helpful, or would like to see more of, the respondents said Educational videos featuring healthcare professionals were most helpful. (The FLF has a bunch of these on their website.) Next came testimonials or surveys from other patients, then scientific articles, and then Frequently Asked Questions from other patients. None of these really surprise me, and it's good to see that healthcare professionals are most helpful. Patient stories are great, and I love reading them. But I've also seen lots of less-than-helpful information from other patients. It's good to see FL patients are valuing good information.

That said, the FLF would also love to hear patient stories as well. If you're interested in sharing yours, read more here about how to do it. 

There are lots of other interesting results from the survey, but I want to highlight one more. Just 9% of FL patients in the survey said they have participated in a clinical trial. They seemed really low to me. So I looked at an article from the Journal of Clinical Oncology from earlier in this year that looked at how many cancer patients in the United States have participated in a clinical trial. 

That article said that just 7% of cancer patients in the U.S. have participated in a clinical trial for a treatment. So the FL population seems more or less in line with that. But that article pointed out that clinical trials are only one kind of research that cancer patients can participate in. Almost 13% have been involved in biorepository research (where a tissue sample is saved for later examination), 7.3% in registry research (where their medical records are used for studies), 3.6% in genetic research, 2.8% in Quality of Life research, and  2.4% in economic research. So while we should all at least consider clinical trials for treatments when appropriate, we should also remember that there are lots of other ways to help with research.

So the Follicular Lymphoma Foundation survey is pretty interesting, and I encourage you to read the article that discusses the results. And while you're there, take a look around the rest of their website. Lots of god stuff there,

Humor and Cancer

About a month ago, I came across an article in the Journal of Clinical Oncology that I thought was interesting, and I forgot about it until this morning. It's from a special section of the journal called "The Art of Oncology," where they publish personal stories from doctors and other healthcare professionals (and occasionally patients). The rest of the journal mostly deals with the science of oncology, with heavy research. But the art of oncology is about other things, mostly dealing with people. That part is a lot messier than the science.

The article I looked at was called "Just Humor Me," and it's by an oncologist who argues that the cancer clinic is an appropriate place for laughter. (If you are sometimes hesitant to read the things I link to because they can be hard to read, then try this one. Very readable.)

I would certainly agree that the cancer clinic is a place for laughter. But I think pretty much every place is a place for laughter. I'm not the only one. The author shares some research: "One survey of patients undergoing radiotherapy in Ottawa found that a stunning 86% of patients felt that laughter was somewhat or very important to their care, whereas 79% felt that humor decreased their level of anxiety about their diagnosis. If we had a drug that decreased anxiety levels in 79% of patients, had minimal to no side effects when used correctly, and cost the health care system zero dollars, should not we be using it?"

That's a very good point.

I used to write a lot more about cancer humor (search for "cancer humor" in this blog and you'll see some of those early posts). I think I do less of it now because humor is still important to me, but it's maybe less vital to my health. When I was first diagnosed, humor was definitely a coping mechanism, which is common for many patients (or Follicular Lymphoma or any other disease or condition). There was definitely a sense for me of "not letting cancer win" by taking away something I love -- laughter. 

I remember, a few days after getting diagnosed, my parents came to visit, so they could see how we were doing and try to gauge how out young kids were doing. My parents were in the other room playing with their grandchildren, so I finished making dinner and set the table. My mom heard me banging around the kitchen, and came to see if she could help. Too late; I had already gotten everything ready. So I said, "I did it all. Nice. Make the guy with effing cancer do all the work." She laughed, which was what I expected. Then she hugged me and said, "WE shouldn't be laughing at this." To which I said, "We can't ever stop laughing at this."

A few years later, after she was diagnosed with ovarian cancer, we all went to a baseball game. She and got in line to get ice cream for everyone. As we got to the front of the line, I whispered to her, "You should tell the ice cream guy you have cancer. Maybe he'll give it to you for free." She laughed. "I can't do that." But after she ordered, she said very quietly, "I have cancer." The young man didn't hear her, or didn't know what to say, and as we walked away, Mom said, "I didn't even get free sprinkles." It made me laugh. 

I laugh, too, at the absurdity of it all. I went to the dermatologist a couple of weeks ago to follow up on my skin cancer surgery from about a year ago, and as I got undressed, the nurse turned her back on me. Which was polite and appropriate. But all I could think of was, "Why bother, nurse? Do you know how many people have seen me without my clothes on in the last 16 years? Doctors, nurses, residents, technicians, probably a few janitors. The idea that it would embarrass me is absurd." I didn't say that out loud, but I thought it. The sheer ridiculousness that I got diagnosed with cancer at age 40 when I was in the best shape of my life is worth laughing it. 

I guess I write less about cancer humor these days, too, because I have a better sense of who is reading the blog. I know laughter comes to people who are open to laughter. Especially when a diagnosis is new and raw, or when things aren't going as hoped, it's hard to laugh. You have to be open to laughter before you can laugh.

I remember a few years ago, my wife and I were talking on the phone, and a friend of ours walked up to my wife to say hello just as my wife let out a big laugh. "Who are you talking to? our friend asked, and my wife said it was me. "Oh my gosh," our friend said. "I thought for sure you were having an affair and talking to your new man." She couldn't believe that y wife and I still made each laugh after being married for so long. I think about that a lot. We've been married for almost 32 years. If we stop laughing with each other, that's when I would know our marriage is in trouble. You have to be open to laughter before you can laugh. Sometimes that's just not possible for someone with cancer (but it's my wish for all of us).

So I hope you find something that makes you laugh every day, even if it isn't humor that is directly about cancer. But if you can find the humor in that, I think you're doing alright.

Have a happy day.

How Useful Are GELF Criteria?

The journal Haematologica just published a very interesting study about GELF criteria in Follicular Lymphoma. In some ways, it's a very Cancer Nerd kind of thing, but it also has serious implications for all of us as patients.

The article is called "Impact and Utility of Follicular Lymphoma GELF Criteria in Routine Care: An Australasian Lymphoma Alliance Study." It looks at 300 FL patients in a database and examines their GELF criteria, treatment decisions, and outcomes.

At this point, you are probably wondering what GELF criteria are and why they matter. GELF stands for Groupe d'Etudes des Lymphomes Folliculaires (Follicular Lymphoma Study Group), a French organization that developed a set of criteria to help determine when a Follicular Lymphoma patient needs to be treated. Because FL is slow-growing, and many of us don't need treatment immediately, the GELF criteria help to make that decision. 

The GELF criteria are:

• Any tumor mass greater than 7 cm (about 2.75 inches)
• Involvement of 3 or more nodal sites, each at least 3 cm
• B symptoms (night sweats, weight loss, etc)
• Enlargement of the spleen
• Compression syndrome (swelling that decreases blood flow)
• Pleural or Peritoneal effusion (fluid build up in lining of chest or abdomen)
• Leukemic phase (cancer cells in the blood) or cytopenias (low blood cell levels).

Having any of these issues, according to GELF criteria, means the patient has "high tumor burden" and should begin treatment immediately. To be clear, I'm not giving full information here. Go to this site and you can see more, like the exact blood cell levels that count as cytopenias.

And my giving less-than-full information is kind of part of the problem. More on that later. 

According to the article, one of the problems with GELF are how they are used. If you look at clinical trial criteria, many of them restrict enrollment to patients with high tumor burden -- meeting at least one of the GELF criteria. This is done to ensure that there is at least some kind of consistency among the patients in the trial.

The problem, though, comes when GELF is applied to real-world situations. Or not applied. 

In their analysis, they found, for example, that about 54% of patients in the study (163 of 300) were "high tumor burden," meeting one or more of the criteria. However, about 10% of those high tumor burden patients (16 of the 163) did not have treatment immediately, as the criteria would suggest, and instead watched and waited. And of the 215 patients in the study who did have treatment right away, 34% (74 of the 215) met no GELF criteria, meaning they did not have high tumor burden and may not have needed treatment right away. 

Clearly, GELF criteria are not necessarily being used by all oncologists to decide when a patient needs to start treatment. 

What's more, the study looked at outcomes, and found that, for both patients who watched and waited and for those who started treatment right away, the GELF criteria did not predict Progression Free Survival. In other words, meeting one or more criteria did not predict whether or not treatment would keep the disease in check.

The authors call for more research to try to figure out this disconnect. It's important for all of us. If clinical trials are being restricted to certain patients, there is an assumption that those patients will benefit from a treatment that gets approved. But if, in the real world, that same restriction isn't being applied to patients who receive the treatment, then that might ultimately be a waste. If patients with high tumor burden are determined to not need treatment right away, then those receiving treatment based on GELF criteria might be being treated unnecessarily.

There's another issue worth mentioning that's important to patients. I think we often see something like GELF criteria (or something like FLIPI) when we are researching our disease, and we misunderstand it. I think this happens early on, especially, soon after we are diagnosed. There are some good sites that describe GELF, like the one I link above and again here.  But there are lots of other that don't give very good descriptions. And frankly, the article I'm discussing is one of them, which gives an abbreviated list of GELF criteria without all of the important detail ("Patients required one or more of the following characteristics to be considered ‘high’ tumor burden according to GELF: any tumor mass >7 cm diameter; ≥3 nodal sites (each >3 cm diameter); B symptoms; splenomegaly; compression syndrome; serous effusion; leukemic phase or any peripheral blood cytopenias"). 

It's easy for a patient to read something like that and panic, thinking they need treatment immediately. The research in the article suggests otherwise, and that's why I tried to highlight that my own list above is not as detailed as it could be. These kinds of official lists, which try to quantify something that is hard to put a number on, make everything seem really definite. Numbers are tricky things, and they don't always represent the certainty that they seem to. A GELF number doesn't always signal a need for treatment, like a Overall Survival figure doesn't say anything about our own individual situations. Follicular Lymphoma is too heterogeneous a disease to have numbers provide any kind of certainty. It's just to different for each individual patient.

So if you're a Cancer Nerd and you enjoy diving into the analysis of statistics and outcomes, I hope you enjoy the article. But even if you're just a non-nerdy FL patient, this is all a good reminder to be careful with what you read and don't jump to conclusions about how the statistics for a large number of patients might affect you as an individual. If you read something and panic, do your best to take a step back, take a deep breath, and make a note to talk to your oncologist about it. We're all different.

Have a great day, and thanks for reading.

EB103 T Cell Therapy

I got several notices yesterday about very early results from a clinical trial for EB103, a T Cell treatment. Given the recent post here about other T-Cell related treatments, it caught my eye, since EB103 seems to work in a different way.

Interestingly, the notices I have gotten are from investing websites, not oncology websites. As I said, it's very early in the clinical trial process,  so there might not be much to report just yet on oncology sites (indeed, the notices really describe results for just one patient). Maybe we'll hear more in a  couple of months at the ASH conference.

It's also early enough in the process for EB103 that it's hard to find clear information about it, the kind that gets written for patients when it's closer to the possibility that patients will be given the treatment. So it took a little bit of work for me to understand how it works (and I'm not 100% confident that I do understand it, to be honest).

EB103 is described as "CD19-Redirected ARTEMIS T Cell." ARTEMIS stands for Antibody Redirected T Cells with Endogenous Modular Immune Signaling. 

The key word for me in understanding this is "Endogenous." T cells are a type of immune cell. They float through the blood and look for things that don't belong there, like bacteria or viruses. They attach to antigens on the cell they are looking to get rid of. And Endogenous Antigen is a type of antigen that exists within a cell. (The opposite is an Exogenous antigen, something like a bacteria, which just floats along on its own, rather than getting into a cell.)

So EB103 works sort of like CAR-T and Bispecifics in that it uses a T Cell to go after cancer cells. It has two parts. One part looks for the CD19 protein on a cancer cell. But the other part is the innovative part. It is able to treat the cancer cell as an invader by looking for the Endogenous antigen, the way a T Cell would look for a virus. Because it has two targets, the EB103 can potentially be more effective.

Maybe more importantly, because it has that second part to it, the maker of EB103 says it is less likely to result in severe side effects like Cytokine Release Syndrome, one of the dangers of CAR-T for some patients.

Their website has a short animated video that describes all of this. As I said, it's still pretty technical right now, but interesting.

The notices I have gotten describe a patient who was given the treatment in a phase1/2 clinical trial and had a Complete Response. The patient has grade 3A Follicular Lymphoma with some grade 3B symptoms. he has already had three treatments and relapsed with each. He had no severe side effects.

This is definitely one to watch, and I'll be curious to see if they present at ASH in December with some updated results. It's very early, and it would be years before this treatment was available outside of clinical trials, so there isn't much to get excited about just yet. 

But I also think it's a good example of some of the ways researchers are going beyond CAR-T and Bispecifics to use the immune system to fight cancer. And that broader trend is worth being excited about.

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.