ASH Preview: Travel Costs for Treatment

The Follicular Lymphoma Foundation has left their survey open for a few more days. Click here to fill it out, and be sure to ask your caregivers, spouses, and partners to fill it out as well. 

I bring this up for two reasons. First, because I want people to take the survey (especially caregivers, whose voices aren't usually heard). But second, because one of the features of the survey involves how long you'd be willing to travel to receive a treatment. It's a really interesting question that doesn't get asked much. For someone like me, with a medical school,and cancer center pretty close by, this isn't a big deal. But for lots of folks, travel to a cancer center can take a very long time, especially for a newer or more complicated treatment that can't be done in a doctor's office treatment room (something like CAR-T comes to mind).

So I'm highlighting an ASH presentation that looks at this problem: "782 Travel Burden and Travel Costs of Bispecific Antibodies in Patients with Relapsed/Refractory Diffuse Large B-Cell Lymphoma and Relapsed/Refractory Follicular Lymphoma."It's one of those Quality of Life research projects that needs more attention.

The research looks at patients with both DLBCL and Follicular Lymphoma, but I'm going to focus on the FL patients. (The difference between them is in how often they are given this particular treatment.)

Specifically, the research looks at Bispecifics -- Mosunetuzumab and Epcoritamab, which have been aproved for FL. These are among the "newer or more complicated" treatments that aren't available in every treatment room, so some patients with FL need to travel to get to them. Travel costs money, but it also costs time -- time in the car, in the treatment room, and away from a job. 

The researchers looked at 114 patients with FL and DLBCL over a year. They looked at the distance that the patients had to travel to get to their treatment, and how much time it took. Then they calculated the financial cost by applying U.S. government standard mileage rates (the amount per mile that people can be reimbursed for in some jobs) and how much money they lost from missing work (using average wages).

Because Mosunetuzumab and Epcoritamab require different schedules, they figured out how many doses each would require over a year, and calculated them separately.

So what did they find?

The overall average one-way distance traveled was 80.1 miles, and took 84.5 minutes. About 56% of the patients traveled less than 30 miles and 24% traveled more than 60 miles.  

When they added things up, the FL patients who had Epcoritamab traveled 4486 miles over 70 hours, costing the, $5758. The patients who had Mosunetuzumab traveled 3,044 miles for 54 hours, costing them $3907. That's significant.

I don't think the researchers are saying Mosunetuzumab is better than Epcoritamab because of the costs associated with travel. That's a very individual thing -- for someone like me, close to a cancer center, where I could receive either one, the costs probably don't matter all that much. The larger point is to make oncologists aware of these costs -- in money and time -- and to make sure they are a part of the conversation that they have with patients about treatment. It's easy to look at an article in a medical journal and say "My patients have a choice of treatment, and X looks like it is 5% more effective that Y, so that's what I will recommend." That 5% difference might not mean much if there's a 2 hour drive involved every week.

(And that, of course, is exactly what the FLF survey is getting at -- trying to get enough data to show oncologists that these things matter to patients, and that Quality of Life should be a part of any treatment decisions that they make.)

It complicates things for everyone when you start bringing in more factors to consider at treatment time. But it's so important to get that bigger picture. 

I'll keep looking for interesting Quality of Life research in the ASH abstracts, along with interesting research on treatments. Look for more soon. 

 

ASH Preview: Statistics on Watching and Waiting

 As I said in my last post, there are a lot of interesting presentations about Follicular Lymphoma  coming up at ASH, and I hope to cover a lot of them. And as I said, I want to start off with a presentation about Watching and Waiting.

If you've been reading for a while, you probably know that I was diagnosed with stage 3, grade 1/2 FL in January 2008. My disease was slow-growing enough that I was able to watch and wait for exactly two years -- I started Rituxan on my second diagnosiversary. The treatment began because of swelling in my leg, probably caused by nodes that were pushing up against something. 

Watching and waiting made absolutely no sense to me when I was diagnosed. Why would anyone choose to not get treatment? But I learned that watching and waiting made sense for some FL patients whose disease was slow-growing, because it essentially delayed using up a treatment. Back then, there were fewer treatments available, and it was assumed that the disease would come back and need another new treatment. The hope was there would be enough treatments, and enough time between them, to outlast the disease.

For a while, there was lots of research on W & W, trying to find some negatives about it. But there was never really anything discovered that upset what the previous research showed -- that there was no real difference in Overall Survival between patients who were treated right away and those who waited. I remember a researcher arguing that W & W was unnecessary because we had more treatments available, and something like Rituxan could be used a s first-line treatment because it was less aggressive than other options. That got debated for a while and then people stopped talking about that.

[I've been writing this blog for almost 17 years, so I don't remember a lot of details, but if you want to be a Cancer Nerd and search the blog for everything I've written about watching and waiting, you have that option.]

So let's take a look at this ASH presentation -- "4416 Practices and Outcomes during a Watch and Wait Approach for Follicular Lymphoma: A Study from the Australasian Lymphoma Alliance."It looks at 267 patients from Australia who were diagnosed with FL and then watched and waited.

It doesn't necessarily present anything new, but it gives an interesting snapshot about what happens when patients watch and wait. Given that I've had a couple of conversations recently about this, I'm guessing there are a bunch of you who are curious about this. Here are the bits that I found most interesting:

• For the patients in the study, the median Time to Treatment was 4.88 years (meaning half of them waited for over 5 years). About 30% of the patients were able to continue to watch and wait for 10 years. That's a long time. (I'm thinking of reader Chip, who was getting a little antsy after 3 years. It can go on for a while, obviously.
• While they were waiting, they had a median of 8 appointments with their oncologists and 2 CT or PET scans.This is pretty interesting, too. I know when I was first diagnosed, and we agreed to watching and waiting, I expected to see the doctor very frequently, and at first I did. But then we stretched out the every 3 months. In this study, if patients waited for 5 years and had 8 appointments, then they were seeing their doctor every 7.5 months. If you're newly diagnosed, keep that in mind -- patients don't need to be seen very frequently, if that's something you're concerned about. The reason is related to the second bit of information here -- only 2 scans in 5 years. Again, I thought I would get scanned every few months. But we shouldn't be exposed to that much radiation -- a scan every year is probably the most frequent you'd need, and even that is a lot of scans. I remember reading a study that said that most patients notice symptoms themselves and then alert their doctor about it.  The new symptoms (like my swollen leg) aren't found in scans or during a doctor's visit. They are found by patients. Why? Because we know our bodies and we know when something isn't right. Trust yourself. 
•  Just to be clear -- the range of doctor appointments in the study was 1 to 34, and the range of scans was 0 to 14. Don't take the median to be the goal. If your doc wants to meet or scan more or less than that, then ask why and if you're ok with the answer, then meet more or less frequently. But it's OK to ask to meet more frequently, if only for the peace of mind (I meet my doctor way more frequently than I need to, even 16+ years later, because it gives me a little comfort.)
• Complications, including patients having new symptoms, happened to 28% of the patients in the study. About 13% of them had transformed disease, where their slow-growing FL turned into a more aggressive type of lymphoma. About 12% had pain or discomfort,  3% had hydronephrosis (swollen kidneys) and 2% had thrombosis (blood clots). Most, it seems, it not have serious medical complications.
  
•  Here's a big one: There was no mortality associated with a WW approach. No one died because they watched and waited. That's worth mentioning. I know I had the fear that I or the doctor would miss something important. That doesn't happen.
• Back to scans. For those who did get scans, about 20% were for "surveillance," basically to take a look around and see what's going on. The other 80% were triggered by "clinical findings," either discovered or confirmed by a doctor;s examination.
  
• During the 5.5 years of follow up, 138 of the 267 patients started treatment -- just over half. For those who did start treatment, 38% did so because of tumors getting larger, 25% transformed, 17% had organ compromise, 7% was for potential organ compromise (I think this was technically the reason I started treatment), 7% had cytopenia (low blood counts). So for those of you who wonder when to start treatment, there are lots of reasons, and I think it's safe to say that you'll know when something is up.
  
•  This is important too: 1 of the 138 patients who started treatment did so by choice. That is, there weren't any symptoms or complications that made the doctor say "It's time to start." The patient said, "I can't do this anymore. I need to start treatment." And that's OK.  Honestly, I'm surprised it was only one. As I have said many times before, we have a disease that has emotional symptoms as much as it has physical symptoms, and for those who are watching and waiting, there are more emotional than physical symptoms. If a treatment results in too great of a physical toll, we stop doing it. If the choice to watch and wait takes too much of an emotional toll, then ask to stop. that's a legitimate choice.
• And finally, it's the same story as I heard 16+ years ago -- Overall survival was similar for watching and waiting than it was for patients being treated. 

So there you have it -- as up-to-date a picture of watching and waiting as we have. If you're watching and waiting now, and you have questions, I hope this answers them. It's such a strange situation to be in, it's only natural to have questions. At least for now, I hope you have something to compare to, and you can see that watching and waiting can be a good choice -- one that won't results in any special problems, as long as you pay attention to your body and let your doctor know when something is off.

There's another interesting watching and waiting presentation that I may write about. But maybe not  -- this one answers lots of questions, and there is so much more to share with you.

Come back soon.

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One final push for patients and caregivers to take that FLF survey. It closes on November 19, so do it soon if you haven't yet!

ASH Abstracts Are Here!

Before I get the Cancer Nerd stuff, I want to remind you about the Follicular Lymphoma Foundation survey that I linked to in my last post. 

The survey is about how patients with FL make decisions about treatment. It should take about 10 minutes to complete, and will provide valuable information that hopefully will be presented at a medical conference next year, where it can be seen by oncologists and researchers and those who manufacture the treatments. 

This link will take you directly to the survey.

UPDATE: The FLF is getting a good response from this survey from patients, but they'd love to hear fro more caregivers -- a spouse or partner or family member or friend who helps you as a patient. If you're a patient, could you please share the link with your caregiver and ask them to take it? Caregivers don't get enough credit for how important they are in the decision-making process. This is a great opportunity for their voice to be heard.

 Thanks for considering it.

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Now, back to that Cancer Nerd stuff.

The abstracts for the ASH meeting are now available!

ASH is the American Society of Hematology, and their annual meeting is the largest gathering of blood cancer specialists in the United States. It takes place in early December every year. This year is it December 7-10.

Much of the meeting involves presentations of research on blood cancers and other blood-related diseases. (It's in San Diego, California, so I assume some of the meeting involves brightly-colored drinks with little umbrellas in them, too.)  About a month before the meeting, ASH published the abstracts -- summaries of what the presentations will be about, so those in attendance can plan out which sessions they want to go to. 

Every year, I like to go through the abstracts related to Follicular Lymphoma and preview some of the more interesting ones. My quick search says there are 329 abstracts for Follicular Lymphoma. You can see them yourself here.  

Some years, there isn't much that's very interesting. But this year, even a quick look at the titles is getting me excited. 

First, though, a few things that I am not seeing in my quick look at the abstracts.

First, I'm not seeing any game-changers. Some years there's a presentation that is so important that they move it to a very big room so they can fit all of the people who want to hear about it. (The last one of those for FL was when they discussed the results of the R-squared trial.) I don't see any of those this year. And that's OK.

I'm also not seeing too many new treatments. There are a few, but not as many as some years. These re usually reports of phase 1 and 2 clinical trials, which means they are very early in their process. They're always exciting, but don't always play out as one would hope, and they aren't heard from again. I do see a few, though, and I'll try to highlight the exciting ones.

What I am seeing is a lot of research on treatments that have already been approved. Some are "real world" studies, looking at a treatment outside of a clinical trial, so there are fewer restrictions on who can actually receive the treatment. Some are combination studies, looking at treatments that have been approved on their own to see how they work together. Some are long-term follow-ups to approved treatments.

Those kinds of presentations are really interesting, too, because they teach us more about the treatment and how effective it is for certain patients. They can be less exciting than a presentation for a treatment that hasn't been approved yet, and that comes with the promise of big change. But those less-exciting presentations often give us incremental change. No big leaps forward, but they do move us forward. And that's a great thing, too.

I'm also seeing some presentations about Quality of Life issues. That's excellent -- researchers are paying attention to it, and oncologists will be hearing about it. There's more to treatment than just how effective it is. There's everything that happens when we live our lives outside of the treatment room. That matters a lot.

I see a couple of presentations about watching and waiting that I'm excited about (and might start off with, since I'm always interested in it).

Finally, there's an "Education Program" about FL that;s in a big room. It's not presenting anything new, just educating oncologists about what the latest is for Follicular Lymphoma. There's one presentation during the session called "Follicular Lymphoma: In Pursuit of a Functional Cure."  The description of the presentation, from Dr. Judith Trotman, and Australian oncologist, says "In this talk, Dr. Trotman will provide the survival data to equip clinicians in framing optimistic initial conversations with most patients at diagnosis of advanced stage FL. She outlines the expectations of longevity and a"functional cure" for many." A functional cure is the idea that many of us will get a treatment that lasts so long that we don't need another, even if we still have some evidence of the disease still hanging around and remaining stable.

That one looks great, and I hope I can get access to a recording of it after it is over. Unfortunately, ASH doesn't provide special registration rates for independent cancer advocates the way ASCO does, so I'd have to pay for access. Maybe I'll get lucky and they'll post the video for free someplace.

So look for some interesting ASH previews in the next few weeks. Always a special time.

(And don't forget that FLF survey! Caregivers, too!)

More to come very soon.

 

Please Take This Survey about Follicular Lymphoma

Hello all.

I'm finally putting up that post that I promised last time. 

I'm linking to a survey here, and I'm asking you to please consider taking it. The link comes directly from the Follicular Lymphoma Foundation, so it is safe.

https://hab.medefield.com/wix/01234/p979123129511.aspx

The FLF developed this survey (I helped a little bit!) to better understand how patients with Follicular Lymphoma make decisions about treatments. It can also be taken by caregivers and physicians to get their input as well. (The survey will direct you to a different version after it asks you if you are a patient, a caregiver, or a physician.)

The survey is open to residents of the United States, United Kingdom, Canada, Australia, and Spain. You can see the survey in English or Spanish. The announcement for the survey is available on the FLF website if you'd like to read a little more about it.

The survey should take about 10 minutes to finish (maybe 15 minutes if you read slowly and carefully like I do). It is completely anonymous.

The survey will first ask you some basic information, and then it will describe the survey methods for a few screens to make sure you fully understand what you need to do. I don't want to give too much detail here, but it will basically ask you to choose between two hypothetical treatments (they aren't real, or even in development). They will distinguish between the two treatments by showing how type are different, in terms of how long you are likely to be in remission, what kinds of side effects are common, and how it is administered. You'll choose the treatment that you would prefer. You'll do that 11 times. 

It's not hard at all, once you read through the descriptions of how it all works. 

The FLF plans to present this information at a future medical conference. They hope the information will be seen by researchers and influence how they develop new treatments. (For example, if the survey showed that patients with FL would overwhelming prefer one way of administering treatments, then maybe researchers will be sure to develop treatments that can be administered that way.)

So this is your way to potentially have a hand in how research gets done in the future. Very cool. 

 

Thanks for taking the survey. It helps all of us.

 

National Workshop: Lymphoma Research Foundation

Well, I have a post that's all written, that I had planned to put up this weekend, but I need to hold off on showing it to you. I'll explain later.

For now, here's a reminder that the Lymphoma Research Foundation is holding its virtual National Lymphoma Workshop on November 16. This is a day-long event, completely online, and it's all about the latest research in Lymphoma ("Understanding Lymphoma Basics and Current Treatment Options").

The workshop is chaired by Dr. Neha Mehta-Shah of Washington University in St. Louis, Dr. Craig Portell of the University of Virginia, and Dr. Carrie Thompson of the Mayo Clinic. I'm not as familiar with the work that Drs. Mehta-Sha and Portell do, but I've written before about Dr. Thompson, who does  a lot of research on Surviorship and Quality of Life. I think she's great. I'm sure the other two will be equally good. 

I attended one of these in the past, and it was excellent. You can expect to hear information that it meant for patients who are newly diagnosed,  those who are relapsed/refractory, and information about survivorship. There will also be a session devoted to Follicular Lymphoma, where they may talk about treatment options, clinical trials, and new therapies. And there will be a chance to submit questions for the experts to answer.

Registration is required. You can find out more details and get the registration link here.

I'll have more for you soon. This is about my busiest time of the year for me, with lots of work stuff, plus some really interesting cancer-related advocacy work that I'm doing. I'll try to share more about it when I can stop and take a breath.

Stay well.

Watching and Waiting and Wondering

There was a comment on a post from earlier this month from an anonymous reader that made a good point -- lots of what we read is based on what has happened to a group of people, but there is a lot of variation within that group. So much of what happens to patients with cancer is very personal, in the sense that each of our situations is very different from other patients'. I think that's especially true of patients with Follicular Lymphoma, since our disease is so variable. People with the same diagnosis (grade 2, stage 4, whatever) can have incredibly different experiences. It's good to remember that.

The anonymous reader who left the comment followed up with an email, and we had a very nice exchange over a couple of days. (I'm always happy to get emails and comments  from readers.) His name is Joel and he's fairly recently diagnosed. He shared his story, and some of the details were very familiar. Joel was diagnosed at 40 (same as me). Grade 1, Stage 3 (me too!). Very active and healthy (I was running 5k and 10k races at the time). Diagnosis was kind of accidental (I was getting over pneumonia and a large node showed up on a chest scan, and then another node popped up near my hip). Very similar stories!

I hope the similarities continue. I feel like I've had a very lucky path as a patient with FL. The disease has remained fairly slow-growing for me and hasn't caused me too many problems. I know that's  not true for everyone.

One of the other things we talked about was making treatment decisions, especially for that first treatment. As you might know, if you've been reading for a while, my FL was slow-growing enough at first that I was able to watch and wait for two full years before I needed treatment. And then I had six rounds of Rituxan. I haven't needed treatment since then -- almost 15 years. 

Like I said, I know how lucky I am.

At about the same time we were having this exchange, I got an alert about a new article from WebMD called "Follicular Lymphoma: Why “Watch and Wait” May Be the Best Approach." A better title might have added "for some patients." It's obviously not true for all patients with FL, which the full article makes clear. And that's the point of all of this -- we all have different situations, even of they seem similar on the surface.

I made a video a few years ago that introduced a WebMD slide show on what patients should do their own careful research. It is, sadly, no longer online. WebMD can kind of a mixed bag. They can be incomplete and alarmist sometimes, and really useful at other times. I think this article on watching and waiting is actually pretty good. It explains the idea well, and gives what I think is solid advice on whether or not it is appropriate, and when it is time to switch from waiting to treating. I remember seeing an article on watching and waiting right after I was diagnosed, when I was first doing internet research and trying to figure out what FL was. I remember seeing the article and thinking "Who the heck would get a cancer diagnosis and not have treatment?" A month later, that was me. It says something about how poorly that article was written. I think the WebMD article would give good advice to someone who was trying to make that decision. 

It's rare that someone who has just been diagnosed has a clear enough head to be able to do that kind of research and make an informed decision. (Joel is a full-on Cancer Nerd, based on our exchange. I can confirm.) Much easier to see clearly when the initial shock of a diagnosis has work off. That's one advantage of being diagnosed with a slow-growing cancer like FL -- for many of us, we have some time to learn and then make decisions. 

And after we've had active treatment, we hopefully have time to continue learning and being prepared for any future decisions (if that's how we choose to deal with it -- pushing it out of our heads completely is also an acceptable choice).

All of this has been going through my head for the last few days, since Joel first wrote. Getting a new diagnosis is so hard. I am grateful that I found an online support group for NHL with some people who were willing to share their stories and give some information. I grew pretty close to some of them, and I still keep up with their lives. It's so important to share what we know. And it doesn't have to be all Cancer Nerd-y stuff, either. Just our living through what we have lived through is worthy of sharing, and incredibly valuable to other patients. If nothing else, it gives them hope. They know there's a tomorrow. Sometimes that doesn't seem like a sure thing, especially when you've just been diagnosed.

So I hope Joel, and any other folks who were recently diagnosed, are doing well and finding the knowledge and support and comfort that you need. 

Take care, everyone.

Pembrolizumab (Keytruda) for Follicular Lymphoma

The medical journal eJHaem just published an article called "A Phase 2 Study of Frontline Pembrolizumab in Follicular Lymphoma." It's very interesting to me for several reasons, most importantly because it reports the results of a clinical trial for Follicular Lymphoma. But there are others, too, which i will get to.

Pembrolizumab is also known as Keytruda, and it is a very important treatment in cancer. It is a PD-1 inhibitor, meaning it stops the effects of PD-1, or Programmed Death 1. It's a very cool immunotherapy treatment. PD-1 is a protein that is an important part of the immune system, because it keeps immune cells from doing their job too well. If an infection occurs, PD-1 keeps the immune system from attacking too many cells, which would result in an autoimmune issue, where the immune system attacks healthy cells. It send s a"programmed death" signal to some immune cells, basically telling them to stop working. 

In terms of cancer, PD-1 works on immune cells that could be going after cancer cells. So a PD-1 inhibitor stops the PD-1 from stopping the immune cells. In other words, it allows the immune system to work on the cancer cells. 

What makes Pembrolizumab so important is that it works on lots of different cancer cells. We usually think of cancer in terms of body parts -- breast cancer, colon cancer, blood cancer. When we think that way, it makes us think of the cancers as all being very different. A traditional chemotherapy that works on breast cancer probably won't work on lung or brain cancer. 

But the discovery of PD-1 changed all of that. PD-1 is present in the cells of lots of different body parts. So Pembrolizumab has been approved for use in patients with lots of different types of cancer -- melanoma, several lung cancers, classical Hodgkin's Lymphoma, urothelial carcinoma, head and neck cancer, and renal cell cancer. Former U.S. President Jimmy Carter received Pembrolizumab; he might be its most famous user.It's been a real game-changer for many patients with many types of cancer.

But not Follicular Lymphoma. 

I've written about Pembrolizumab and FL a few times. The first time was in 2016. I looked at a couple of pieces that Dr. John Leonard had written about new treatments for FL, and he mentioned a phase 2 study of Pembrolizumab and Rituxan. In the other times I've mentioned it, it was usually to say that results from a study weren't as strong as researchers had hoped. 

And that's the case with this one, too. It look at a phase 2 study of just Pembrolizumab indolent B cell lymphoma, including FL. In this fairly small study, 9 patients with Follicualr Lymphoma were enrolled. The Pembrolizumab wasn't very effective -- 3 of the patients had a partial response, 3 had stable disease, and the other 3 had their FL get worse. Safety wasn't much better than effectiveness. Two of the patients had grade 3 (serious) side effects. Both had transaminitis (high levels of liver enzymes and the blood) and one of them also had hypophysitis (an inflamed pituitary gland).

All of that was enough for the researchers to say "Frontline pembrolizumab for FL is associated with limited responses and a clinically significant rate of IRAEs. Alternative strategies for targeting the TME [Tumor Microenvironment] in FL should be explored." in other words, this one isn't working.

It certainly makes sense to give Pembrolizumab a try in FL. Why not? It works in lots of other cancers, even in another blood cancer (Hodgkin's Lymphoma). But for whatever reason, inhibiting PD-1, at least with this treatment, just doesn't do the job. 

As I said, the results are most interesting to me, but there are some other things about the article that are also interesting.

First, I love the title -- "A Phase 2 Study of Frontline Pembrolizumab in Follicular Lymphoma." If this had been a successful trial, the results would have been given to us upfront, something like "Pembrolizumab Induces Durable Response in Follicular Lymphoma: Results of a Phase 2 Study."I learned that lesson long ago. When you're writing an email with good news, put the good news in the subject line. If it's bad news, make the subject line neutral and bury the bad news in the middle of a paragraph halfway through the email. It's fascinating that the same strategy turns up here.

But even more fascinating is that the bad news turns up at all. It is very rare to see a negative study get published. I could find dozens of examples in this blog over 16 years of reports of phase 1 and phase 2 studies that were very enthusiastic, but were never heard from again. The later studies weren't successful, the researchers never reported the results. I would love to see more negative studies published. They can be just as helpful as the successful ones.

But those studies were also probably commercial, and if a business has sent millions of dollars trying to develop a treatment, they really have no incentive to advertise to the world that the treatment didn't work out. More likely, the company died and the people working for it moved on to something else.

What makes this study different is that Pembrolizumab was already a successful treatment, already making billions for its makers. The authors aren't business people; they are academics and researchers, doing a study with a treatment that has already been approved. They really do have some incentive to share what they learned, even if the treatment wasn't successful. The study was successful -- we learned something from it.

So I'm enjoying this "failure," because it is so rare to read one. I don't think we've seen the last of Pembrolizumab for Follicular Lymphoma. There are still some studies out there. Maybe one of them has just the right combination or the right dosage to make it work. It would be great to add FL to that long list of cancers that Pembrolizumab can treat successfully.

But in the meantime, as the authors of the article say, it's time to try something new and stay hopeful.

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.

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.

Some Treatment Approvals outside the U.S.

I've said more than a few times that I know my perspective on Follicular Lymphoma is very much an American one. I tend to focus on treatment approvals by the FDA in the United States, and write about issues that affect Amercan patients. Which makes sense, of course, since I live in the U.S.

But I also try to keep up with things that are happening outside my country when I can. I have readers from about 80 different countries, according to my Google analytics. I want to provide relevant information to as many of you as I can.

So here's some news from the last couple of weeks that may excite some you.

EU approves Odronextamab

First, the European Commission has approved Odronextamab for patients with relapsed or refractory Follicualr Lymphoma who have had at least two prior treatments. 

If you've been reading the blog lately, you know that Odronextamab is a bispecific antibody, a type of treatment that many oncologists are excited about. You also know that there was some slightly revised data published recently from the clinical trial that was used to approve the treatment. And you also know that in the U.S., the FDA denied approval (delayed approval, really) for Odronextamab a few months ago because they wanted to see more data from a larger trial. So you folks in Europe have access to this sooner than those of us in the U.S.

EU Approves Epcoritamab

The EC also granted "granted conditional marketing authorization" for the expanded use Epcoritamab for patients with relapsed or refractory FL who have had two or more treatments. Epcoritamab is also a bispecific antibody. It was approved by the EC for Diffuse Large B Cell Lymphoma, so this approval makes it "expanded use." The "conditional" part of the approval seems to come from a planned study that the makers of the treatment will conduct to try to cut down on Cytokine Release Syndrome. But the treatment is now available. 

Epcoritamab was approved by the FDA about two months ago. So it looks like we have a draw, as far as whether Europe and the U.S. approved a bispecific before the other. We may need to go to a shootout.

(See? A Football comparison. I can write for non-U.S. audiences. I didn't even call it Soccer.)

EU Approves Liso-Cel

Finally, the European Medicines Agency approved a Type II variation application for Liso-Cel (also known as Breyanzi) for r/r FL patients with at least two prior treatments.Liso-Cel is a CAR-T treatment. Before I get into the FDA approval, it might be important to know what a Type II variation is. Then we can determine who won this football/soccer match....

But wait. What's this? Japan is on the pitch!

Japan's Ministry of Health, Labor, and Welfare has also approved Liso-Cel for r/r FL patients, but with only one prior treatment, not two. 

This changes everything! We have to sort this out before we can determine a winner of this match! I'll need to get back to you!

That was silly, I know. But truly, the winners are all of the thousands of r/r FL patients in many countries who now have access to the some of the treatments that are most exciting these days. Expanded options are good for all of us. 

And while many FL patients have relapsed or refractory disease after two treatments -- and those are probably the patients who need treatment options the most -- some of us have r/r disease and just one treatment, and others are still benefiting from their first, or have yet to receive treatment. So I hope there are more approvals coming soon that I can share with you. 

That would be some World Cup-level stuff.

 

Liso-cel

https://www.cancernetwork.com/view/ema-validates-type-ii-application-for-liso-cel-in-r-r-follicular-lymphoma

Financial Problems, Mental Health, and Cancer

As I have said a few times in recent posts, I have been thinking a lot more lately about issues of survivorship -- not just what happens between diagnosis and treatment, but what happens after we're told we're "all better." 

That involves a lot of other issues, and they certainly include physical issues. We all deal with the physical issues that come with having cancer. And most of us also have to deal with the side effects of treatment -- short-term and long-term. (I'm dealing more and more with long-term side effects these days.)

But there are lots more non-physical side effects that we need to deal with, too. Emotional side effects are certainly prominent, and it's important to be aware of them and have a plan for dealing with them.

And then there are the financial side effects of having cancer. More and more advocates are using the term "financial toxicity" to describe these. Just as a clinical trial report will focus on "toxicity" (usually meaning the physical side effects of treatment), doctors and hospitals and pharma companies are being asked to pay attention to financial toxicity -- the side effects related to money.

This is an especially big issue in the United States, where for many people, our health insurance is tied to our jobs. Many other patients in the U.S. have some kind of government-sponsored health insurance, whether Medicare or a state- or federal-sponsored healthcare program. But even with health insurance, some treatments can cost a huge amount of money. CAR-T is a great treatment for many people, but also can cost close to a half million dollars. 

I can't say how much of a financial burden that cancer is for people outside the U.S. But even if treatment is paid for, there are so many other financial issues -- the cost of transportation to doctor appointments. Prescription medications for side effects. Loss of a job, and the cost of finding another one. Or loss of wages even if the job isn't lost. It all adds up.

This probably isn't news to any of you. Cancer is expensive.

But I also think it can be good to know that you're not the only one having problems. Blood-Cancer.org published a piece yesterday by Daniel Malito called "The Financial Cost of Cancer and How To Deal With It."Dan often writes about the funny things that have happened to him as a blood cancer patient. This article isn't so funny. He offers some advice about financial issues, such as disputing hospital bills. 

I thought it was a timely article, given how much I've been thinking about these kinds of issues lately, and given that the medical journal JCO Oncology Practice also published a piece a few days ago about financial toxicity.

The JCOOP article is called "Exploring the Relationship Among Financial Hardship, Anxiety, and Depression in Patients With Cancer: A Longitudinal Study."

In some ways, what the article says is not at all surprising -- basically, that there's a link between financial hardship and mental health in cancer patients, But I think it's important anyway, for a couple of reasons.

First, it's a longitudinal study -- it follows a number of patients for a long period of time (over a year), rather than doing a survey that measures what is happening at a particular moment (also important, but also much more common than a longitudinal study, which takes more effort to conduct). It's easy to say "Of course there is a link between financial issues and mental health." It's important to have a team of experts actually study it and write it up in a medical journal. It kind of makes it "official" that way.

And that's the second reason it is an important article -- it's in a medical journal aimed at clinical oncologists. Those are the doctors that see cancer patients every day. They are the ones that need to be aware of how a treatment will affect a patient's quality of life. They need to be aware of financial toxicity and its relationship to mental health. They need to know what survivorship means.

The JCOOP article is fairly easy to read, and I suggest you take a look if you're interested. But I'll mention one thing that I found most interesting -- financial hardship and mental health feed one another.

The researchers looked at data from 2,305 patients with cancer. They measured financial hardship, depression, and anxiety at 3, 6, 9, and 12 months after the study began. They found, for example, that having symptoms of depression at the beginning of the study and 6 months later, or having anxiety at 9 months, could predict that financial hardship was likely to happen later on. But it also predicted that having financial hardship at the 9 month point predicted that it was likely that symptoms of depression would come at the 12 month point.

In other words, financial problems can lead to mental health issues, but mental health issues can also lead to financial problems -- they are intimately related. 

In all, the researchers fund that about half of the patients in the study experienced financial hardship. As they say, "These findings underscore the need for a comprehensive approach in cancer care that concurrently addresses anxiety, depressive symptoms, and FH, recognizing their interconnected impact."

In other words, "Hey, doctors! Pay attention to patients' lives, even if their cancer seems to be getting better!"

And of course, survivorship also depends on us as patients. We need to be aware of the kinds of issues that we are likely to face -- physical, emotional, financial. And we need to make it a point to bring those issues up with our doctors, and ask if there is help available. Many cancer centers have survivorship programs, and many doctors don't know enough about them to make them effective.

So it's up to us as patients to make sure we are taken care of. 

Thanks for reading, and take care of yourselves.

New Data for Odronextamab

The medical journal Annals of Oncology published some updated data on the bispecific Odronextamab last week. It will be very interesting to see the implications.

You may remember Odronextamab being in the news a few months ago. It's a bispecific antibody, attaching to the CD20 protein on a Follicular Lymphoma cell and a CD3 protein on a T cell. (Read a little more about Bispecifics here as a reminder.)   In March, the FDA denied the application for Odronextamab to be approved, but only temporarily. The treatment had been granted accelerated review in October 2023, but in March, the FDA decided that it wanted to see more data. The application had been submitted with data from phase 1 and phase 2 trials.

The results from those trial were good. In the phase 2 trial, patients with Follicular Lymphoma had an Overall Response of 82% and a Complete Response of 75%. Durability was good, to, with a median duration of response of 20.5 months and median Progression Free Survival of 20 months. Safety was a potential issue, with 100% of the 131 patients with FL experienced side effects, with 78% of them experiencing grade 3 (serious) side effects, including Cytokine Release Syndrome (in over 50% of patients in the trial), low blood cell counts, diarrhea, fever, and joint pain. 

The article in Annals of Oncology is called "Safety and Efficacy of Odronextamab in Patients with Relapsed or Refractory Follicular Lymphoma," and the results are slightly different. It's looking at 3 fewer patients than the earlier data, with an ORR of 80% (vs 82%) and a CR of 73.4% (vs 75%). Meduan PFS is about the same, and the duration of CR is 25 months.

Still, the biggest concern seems to be safety. About 16% of patients had to stop the trial because of side effects, and the numbers for Cytokine Release Syndrome, Neutropenia (low whire blood ells), and Pyrexia (fever) are high. 

The advantage of having this published in a medical journal, even if the numbers haven't changed much, is that it has gone through peer review -- other experts have seen the data and confirmed it, and potentially approved the authors' assessment of their own data ("generally manageable safety.") The authors discuss safety issues in their conclusions, and point out that the trial happened during the Covid period before vaccines, which may have affected some patients results. They also say that, based on the safety data, they plan to conduct the trial on an out-patient basis. In other words, in the phase 2 trial, patients had to go to the hospital to receive the treatment and be monitored. They think side effects are manageable enough that hospitalization won't be necessary as they expand the trial to get more data.

So it looks like there isn't enough new data here to justify FDA approval. But having it all be reviewed by outside experts, and seeing the optimistic analysis from the authors, means that we might see another application soon -- within a couple of years, certainly, maybe sooner than that. (Assuming the phase 3 trial doesn't show any new safety issues.)

So this is overall good news, even if it's mostly old news.

 We'll definitely keep an eye on this one.

New Research on FL Subtypes

Some very cool and potentially important research in Blood Cancer Journal this month. It's called "Identification of Genetic Subtypes in Follicular Lymphoma." It's a straightforward title for some research that is fairly complicated, though its implications are easier to understand. There is a lot of genetics in here, and I found myself getting lost at times, but as I said, its implications are easier to understand. I'll do my best to give you the important stuff.

Some background, first. Cancer researched changed for the better about 20 years ago, when the Human Genome Project finished mapping al of the genes in the human body. That mattered because it allowed researchers to start looking more easily at the genetic basis for cancer. That is, once they saw where genes were supposed to be, they could more easily see that they had moved or changed, and they could figure out that some changes caused health issues like certain cancers. 

Over time, that has made it easier for researchers to identify specific genetic bases for certain cancers. Knowing the genetic basis for something allows other researchers to create targeted treatments. I don't go into much detail when I talk about these things here, because it's usually not necessary. I'll say something like "This treatment helps stop the cancer cell from growing because it shuts off a switch that tells a gene to create an enzyme that enables a protein to tell the cancer cell to keep growing." But that, in a very oversimplified way, is how genetics works in cancer treatments. It's about figuring out which gene is giving instructions that cause a long chain that lets cancer cells grow an survive.

So one of the many types of cancer research is trying to classify certain cancers based on their genetics. As I said, lots of cancers have had this happen (including DLBCL). But so far, that hasn't happened for Follicular Lymphoma. Until now, possibly.

The researchers who wrote this article looked at DNA samples of 713 FL patients before they had treatment. Then they did some DNA analysis and found that there were 5 different genetic subtypes for FL -- 5 different ways that certain genes were expressed. This is important. FL is often thought about as a single disease. But at the same time, if you talk to any other FL patient, you see just how heterogenous the disease is -- how different it shows up. Some us (like me) can watch and wait for a couple of years. Others need treatment immediately. But we both might be stage 3 grade 1/2. And those two people will respond to the same treatment in very different ways.

I don't want to confuse things too much with a lot of detail (which will confuse me, too). But these are the 5 subtypes that the researchers identified:

CS, with affected genes CREBBP and STAT6

TT, with affected genes TNFAIP3 and TP53

GM, with affected genes GNA13 and MEF2B

Q, which stands for quiescent, which means "motionless" or "resting." This genetic subtypes often included patients with stage 1 disease and showed fewer mutations than the other types.

AR, with mutations of the mTOR pathway. This genetic subtype was the one most often associated with advanced-stage disease.

If you google those specifc genes (like CREBBP), you can find more information about what they do. But they generally boil down to the general description I wrote above -- they tell a protein to allow something to happen that leads to a chain of events that keeps a cell alive and growing longer than it should be.

The researchers looked at a second database of FL patients who had received treatment to verify all of this, and to figure out the outcomes for these subtypes. 

That's where it gets really interesting. They can speculate what the implications might be for these genetic subtypes. For example, they think mTOR inhibitors might be an effective treatment for the AR subtype. The CS and GM subtypes might respond to epigenetic modulation (like Tazemetostat). TT might do well with chemotherapy-free treatments. Their hope is that future research will help sort all of that out. But this is a good start.

One other interesting bit from the research -- they were able to look at a group of patients with transformed FL (slow-growing disease that turns into a different, fast-growing disease like DLBCL). They found that early transformation (soon after diagnosis) had stable genetics, while late transformation had unstable genetics. In other words, the subtype that might have shown up on a genetic test soon after diagnosis wouldn't be the same as one that shows up years later at transformation. This is just my speculation, but that would seem to be why it's so hard to find a biomarker to identify transformation (or even POD24) before it happens. The tests miss it because it isn't there yet. They do recommend genetic testing often to pick up on these changes.

All of this is very early research, and most of the practical stuff (like which subtypes will result in certain treatments being more successful) is just guessing. And even if further research confirms the subtypes, it's still not that simple -- there are lots of other factors that go into why a treatment does or doesn't work (otherwise, everyone with a EZH2 positive FL would respond to Tazemetostat, which isn't the case). 

But it's a start, and possibly a good start, in figuring out why we can all have such different forms of the same disease when so many things look the same.