Seeing Yourself in Others

A few days ago, I had the wonderful opportunity to be in a Zoom meeting with a bunch of other patients with Follicular Lymphoma. There were about 15 people on the call, and my math might be off, but I think we came from and/or lived in 7 different countries. It's never easy to find a time where people from different parts of the world can conveniently meet, but I'm very glad the meeting happened and very grateful that I was invited.

The meeting was set up by the Follicular Lymphoma Foundation, and the participants were Super Supporters, a group of patients who provide insights and ideas for the foundation. 

I won't get into details of the meeting or who was there, but I do want to share how I felt afterwards.

If you've never had the opportunity to meet with a group of FL patients, or cancer patients or survivors in general, I hope you'll seek out such an opportunity. There's something really wonderful about seeing yourself in others, and hearing their stories. Everyone with cancer has a unique story. And that's especially true for a cancer like Follicular Lymphoma, which is known to be heterogeneous, taking many different forms. Everyone on the Zoom call had a different experience. 

But at the same time, there was so much that we had in common. We share the same fears, sometimes the same guilt. Many of us were surprised by our diagnosis. Many of have dealt with the same short-term and long-term side effects. For all our differences, we have a lot in common.

And it's a strange experience to hear your story mirrored in someone else's.

I remember years ago being part of a face-to-face group of cancer patients and survivors giving some feedback on a cancer-related website. Our meeting started with everyone introducing themselves. The introductions went on for a while, with people sharing lots of details about their stories. I remember one patient in particular who had been diagnosed with a particular cancer (not FL), but the diagnosis took several years to finally settle on cancer. This person was told it was a type of cancer, then told it was a different kind of cancer (a less worrisome type), then told it was a third different type (a more worrisome type), and then told that it wasn't cancer after all, but a different condition, and then finally the cancer diagnosis that proved to be correct.

As they told the story, everyone in the room went on this roller coast ride with them. You could see it in everyone's faces, including mine -- hopeful that the diagnosis was the right one, then frustration and sadness that it wasn't, then anger that they had been given wrong information, and then hopefulness again.

I can't describe accurately what it felt like to hear this person's story. Despite all of those negative emotions -- frustration and sadness and anger -- when they finished, I felt this overwhelming positivity. It wasn't just relief that they finally got an accurate diagnosis. It was a feeling of connection -- of knowing that, even though my story was different, we were connected in ways that other people just couldn't be connected. It's not the same to hear a doctor tell someone else they have cancer as it is to hear it said about yourself.

I felt  similar way after the FLF meeting. Everyone;s story was different, and while we didn't share our stories in the introductions, those details came out as we talked over the course of 90 minutes. Cancer can be isolating sometimes. Connection is a great thing.

At the same time, I was keenly aware of the differences. And that was a great thing, too. I've been living with Follicular Lymphoma for over 17 years. I had a very particular experience when I was diagnosed, watching and waiting for 2 years. I was relatively young -- 40 years old. My kids were 6, 8, and 10 years old. I had 6 rounds of Rituxan as treatment. I've dealt with long-term side effects related to my heart and my skin. I'm a Follicular Lymphoma patient advocate, blogger, and freelance writer. I have thought about FL literally every single day since I was diagnosed. What's more, I actively seek out information about FL -- every day. I don't push it out of my head. I pull it in.

And that's all very different from most other patients' experiences. And hearing those differences reminded me of how important it is for me to recognize, think about, and understand those differences in experience, especially if I am going to call myself a Follicular Lymphoma patient advocate. If my goal is to help lots of people, I need to remember that not everyone thinks like me, or acts like me, or wants the same things.

So, as I said near the beginning of this post -- if you've never had the opportunity to meet with a group of FL patients, or cancer patients or survivors in general, I hope you'll seek out such an opportunity.If feels good to share your story, and it feels good to see yourself in others' stories. Maybe that means finding a face-to-face support group at your cancer center or somewhere else near you. Maybe it means finding an online group, as I did when I was first diagnosed. There are some good ones online, including the Facebook groups Living with Follicular Lymphoma, Linfoma Folicular Grupo, and Young Adults Living with Follicular Lymphoma. The new FL Community Podcast is explicitly about sharing stories, and is going to be an excellent resource for a lot of people.

And if you want to share your own story, I recommend going to the FLF website and providing some details. You can read others' stories, too, and maybe see yourself in others. And with a little luck, you'll capture that same feeling of being connected that I have been able to feel. 

As much as I wish it wasn't true for any of us, we're all kind of in this together. We can help each other out even in the smallest of ways.

Take care of yourselves.

New Research on Follicular Lymphoma Subtypes

The journal Cell Reports Medicine has a very interesting article this month, reporting on some research that might have significant implications for those of us with Follicular Lymphoma.

The article is called "Whole-genome sequencing reveals three follicular lymphoma subtypes with distinct cell of origin and patient outcomes."

Basically, the article is suggesting that Follicular Lymphoma is not one disease, but three different subtypes. Those three subtypes have different outcomes, and would require different treatments. The idea that FL isn't just one thing really is not new. As I wrote in reviewing an ASCO presentation, FL is considered heterogeneous -- it shows up in each of us a little differently. That makes it tough to figure out how to treat it. There have been many attempts (including that ASCO research) at finding biomarkers to help with this -- some kind of biological signal that will help guide treatment decisions. So far, those attempts haven't been completely successful.

That's where we are with this research. It describes an attempt at finding gene-based biomarkers that will guide treatment for Follicular Lymphoma.

First, some more background about where the study is coming from. Cancer research took huge steps forward when the human genome was finally mapped about 25 years ago. The human genome is the complete set of all 62 million or so genes in a person's DNA. Mapping out the genes is a first step. Once researchers knew where they were, they could start to examine what happened when they were damages, or switched places, or did things they weren't supposed to do.

Cancer researchers have been trying to use this knowledge to develop new treatments since that time. A well-known example is HER2-positive breast cancer. HER2 is a protein that is the result of someone having extra copies of a specific gene. It can result in a type of aggressive breast cancer. There are now treatments that can target this type of breast cancer, and the prognosis has greatly improved as a result.

I'm using breast cancer as an example because, so far, we don't really have that kind of success story for FL. There aren't any reliable biomarkers to guide research and treatment. 

And that's what this research is hoping to do -- identify biomarkers that can distinguish different subtypes of Follicular Lymphoma.

The early results of the research look good, hough, as I'll explain, I'm still a little skeptical.

(And this is a good time to give you the reminder that I give to you frequently -- I am not an oncologist or a cancer biologist. I'm just a Cancer Nerd -- a patient who reads a lot. Keep that in mind, always.)

The researchers looked at 131 samples from FL patients from China and conducted Whole-Genome Sequencing (mapping out the entire DNA of each sample so they could be compared to one another to see how they were specifically different from one another). They determined that there were 3 different subtypes, based on differences in the DNA. Recognizing that there are possible differences based on geography, they repeated the same process with 227 samples from outside China, and found the same results.

At the risk of being too general, I'm not going to get too heavily into the details of what they found. Genetics is fascinating, and if you want a deep but understandable introduction, I recommend The Gene: An Intimate History, by the oncologist Siddhartha Mukherjee. If I got too much into the details of the genes, I'd mix up you and me both. Here's a sample from the article: "K1 is related to the activation-induced cytidine deaminase (AID) activity and is enriched in activation B cell-like (ABC) DLBCL, whereas K2 is associated with POLH activity and is enriched in GCB-like DLBCL.The majority of the kataegis events were concentrated in specific genomic regions, notably the IGH, IGK, and IGL genes, along with the transcription start site (TSS)-proximal regions of genes such as BCL2, BCL6, BCL7A, CXCR4, and BTG2." I lost track myself of which gene or protein they're talking about.

More important are the results -- the three subtypes that they are proposing.

They call them C1, C2, and C3.

C1 is high grade (fairly aggressive) but has a ow risk of POD24 (the disease returning within 24 months after successful treatment), and has a good Progression Free survival (a long time between treatments). 

C2 is low grade (less aggressive, probably more likely to watch and wait), with low chance of POD24, and moderate PFS. 

C3 is high grade, with a high chance of POD24, and poor PFS.

Looking at those differences on the surface, they seem to capture FL patients pretty well. It's a heterogeneous disease.

The details of how they got to these three categories are interesting, though pretty dense. They provide a very convenient chart in the article (Figure 7, if you want to take a look yourself).

 Each of the three types has its own biomarkers. C1, for example, is more likely to have BCL6, or the B Cell Lymphoma 6 gene (as well as a few others). There seem to be differences in the Tumor Micro-Environment for each type as well (this is what is happening in the area around the cancer cell, which can be just as important as the cancer cell itself). C1, for example, tends to have "hot" tumors, meaning there are lots of immune cells in the tumor. This means it is more likely to respond well to immune therapies, for example.

The summary for all of this is that the researchers did a bunch of different tests on the genome to figure out which genes were different and why that mattered, and then suggested that certain treatments would work on the different subtypes based on those differences. C1 may respond well to PI3K inhibitors, BTK inhibitors, IRF4 inhibitors, and immune therapies. C2 may respond well to BCL2 and EZH2 inhibitors. C3 may respond to PI3K, BTK, IRF4 inhibitors, but not immune therapies.

It's all very encouraging. The testing they did was pretty extensive, and the fact that they tested it on a second cohort helps to make their results more encouraging still. 

But as I said, I'm skeptical. Maybe "skeptical" is the wrong word here. I don't doubt their results. But I've been following the search for FL biomarkers for 15 years, and I haven't seen any real results yet. Maybe this will be the one that gives it to us? Or at least moves us on that path?

As a start, it's going to take a much larger sample with the same results to really get the attention of the Lymphoma community. Then there will have to be actual trials, where a large number of FL patients are divided into subtypes, and then treatments are given to them based on their subtype to see if, for example, the EZH2 inhibitors really do work better than an immune therapy for the C2 patients. 

It's going to take come time to test all of this out. Years.

But that's OK. I can wait.

I am encouraged by it, and hopeful. It all makes sense. Some patients in a trial respond really well to a treatment, and some don't respond at all. They were all put into the trial based on having some things in common. But maybe the traits that they have in common aren't the ones that matter. Maybe this research has identified the things that really do matter.

I'll definitely keep an eye on this one. It's been published in a peer-reviewed journal, so it has been seen by other experts, which means it is less likely to be presented at a conference like ASCO or ASH. But an update to the research cold be presented there. 

I'll keep looking. You keep hoping. 

 

 

Oncologist Appointment

I had a 6 month oncologist appointment today. Everything looks good.

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A quick comment before I get to the details of the appointment. 

When I came out the office, I had a text waiting from my wife. I responded, and also let her know that everything looked good on the cancer front. My kids were 6, 8, and 10 when I was diagnosed. They're 24, 26, and 28 now. But even when they were small, my wife and I made it a point to be completely honest with them. We knew that if we hid anything from them, even small kids were going to figure out something was wrong, and probably imagine the something even worse than the truth. So the Full Transparency Policy has staid in effect. I text them after each appointment.

But then as I was walking to my car, I thought I should tell my kids the good news, too. I started to text them, and stopped myself. What I started to say was "I had an oncologist appointment this morning. Everything looks fine."

But here's the thing -- they didn't know I had an appointment. So even the small shock they might in that little space between "I had an oncologist appointment" and "Everything is fine" was something I wanted to avoid.

So I flipped it and reversed it, as Missy Elliott would say. "Everything was fine at my oncologist appointment this morning." Start with the good news. Don't leave them guessing.

And yes, I know I don't start with the god news when I write to you all, like I did with this post. But I know you're living with this every day. You can handle it.

I'm always fascinated by the ways we use language to talk about cancer. Maybe I was overthinking that text to my kids. But I know how much impact words can have sometimes. 

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Back to the appointment.

As usual, my 6 month appointment involved blood work, a physical exam, and my own reporting on how I was feeling.

I'm feeling fine, at least as far as cancer goes. No new swollen nodes, which the doctor confirmed with his exam, and no B symptoms. My bloodwork is normal.

We always have a good chat about what's going on in our lives, since there aren't too many health concerns to get into. We talked about travel, and our separate experiences in Philadelphia and Syracuse (my wife and I visited both places this summer). The doctor recommended a good Barbecue place in Syracuse -- we somehow always end up talking about smoked meat.

As far as my cancer goes, he said it was "remarkable" that I have gone 15 years with just the Rituxan. He thinks there is a chance that I won't ever need treatment again. (That's a wonderful thought, and while I try to live my life as if that was the case, I also refuse to believe that it's true.) Interestingly, he said that if I had signs of lymphoma again, he would want to basically start from scratch -- doing a biopsy and everything else at diagnosis to know for sure if it was Follicular Lymphoma. That makes sense, and it's what I assumed would happen. But this is the first time he's kind of suggested that it might not be FL, if I do get another diagnosis.

As always, I asked if there was anything new and exciting with treatments. He is still very excited about bispecifics. He said they working very well for a lot of patients, though there are still concerns about side effects. When a patient is treated with bispecifics at the cancer center that I go to, they are admitted to the hospital, in case there are any problems. He thinks newer generations of bispecifics will be safer, with fewer severe side effects. This will make them more widely available, with treatment in a doctor's office and not in a hospital. Very interesting.

So that's my update. I'm still healthy, as far as Lymphoma goes. My wife ad kids have been informed. Traffic and the parking garage at the cancer center are still awful. My doctor is great but sometimes forgets to put in the blood work order. Overall, everything looks good.

We're in the summer doldrums when it comes to Lymphoma research. All the good stuff was presented at ASCO in June. I'll keep looking for good things to share. If I can't find anything soon, I may have to start sharing pictures of my dog instead.

Stay well.

Epcoritamab + R-Squared: Interim Results

The makers of the bispecific Epcoritamab just issued a press releasewith some interim results from the phase 3 clinical trial for Epcoritamab and R-Squared (Revilid + Rituxan) for Relapsed/Refractory patients with Follicular Lymphoma. The press release points out some very good news. The combination has an Overall Respose Rate of 95.7%, an improvement over R-Squared alone (which has an ORR of 89%). It also had a higher Progression Free Survival; it "reduced the risk of disease progression or death by 79%."

The plan is to present the results at the ASH conference in December, where they will present all of the data. The FDA agreed to a priority review of the combination last month, meaning they should issue a ruling by November 30 (which would be before the ASH conference).

All of this sounds great, but I have some questions. And, to be clear, I'm not suggesting anybody is doing anything wrong.

Te press release gives very little detail. And there's a good reason for this -- they're holding off on releasing any details until the ASH conference, which makes sense. This is a "scheduled interim analysis," meaning they had planned to look at the results they had so far at this point in the trial. Because they haven't competed the trial, they don't want to give too much detail yet.

The other side to all of this is that they need to keep investors happy. A little good news will do that, and a fairly general statement with some plans for the future won't hurt either.

But for me, it all raises more questions than it provides answers. Last year, there were some safety concerns about Epcoritamab, though they were explained by the trial taking place during the Covid pandemic, when some trial participants had lower immunity which caused some side effects. The press release here says that there were no new safety issues with this combination -- only the side effects that were already known for the three different elements. But if there were already some concerns, saying this doesn't really answer the initial questions about safety.

Again, I'm not saying anybody is doing anything wrong. For me, this isn't really an issue with Epcoritamab or its makers. It's more about frustration with the larger system for approving treatments, and the place of the patient in it all.

I'm looking forward to the ASH conference, so we can see more of the data that this FDA application is based on. I have little doubt that the data presented will be positive and encouraging for patients. I hope my questions and concerns are answered. I just wish that I didn't have to have so many of them along the way.

FL Community Podcast

As you know, I'm a big fan of  two things when it comes to Follicular Lymphoma -- getting as much good information as possible, and patients sharing their stories.

So I'm excited to let you know about a new podcast related to Follicular Lymphoma called The FL Community Podcast. It's made by FL patients, for FL patients (and anyone else ho wants to know more about the experience of living with the disease).

The hosts of the podcast are Nicky Greenhalgh and Paul Mollitt. Nicky started the Living with Follicular Lymphoma group on Facebook, and Paul started the related Facebook group for young adults. If you have watched the webinars from the Follicular Lymphoma Foundation, you've seen both of them featured as patient voices in the last few months. Nicky is a clinical nutritionist, specializing in working with patients with cancer, and Paul is a psychotherapist. So they're bringing both personal experience and professional expertise to this podcast. Expect a lot of talk about some of the survivorship issues that have been so important to me lately -- mental health, nutrition, exercise, etc. 

The first episode focuses on "Initial Diagnosis," and their guest is Nicola Attfield. All three of them share their story of being diagnosed with FL, and the shock that came with it, and the emotions surrounding that diagnosis. Their experiences are different from one another, but recognizable to many of us. I won't get into detail, because I think it's important for you to listen for yourselves. It's about 49 minutes long, and worth the time.

As I said, I think sharing our stories with one another is really important. This podcast is different from a lot of what I usually share with you, which tends to focus on things like presentations at medical conferences or articles in medical journals. And obviously, that kind of information is important for us to have. It lets us informed conversations with our doctors.

But just as important is hearing from other patients. I think it helps us feel less alone. As unique as all of our stories are, there are many things that we share, too, and hearing that someone else was shocked at a diagnosis because they felt no symptoms, or that they feared for their kids, or that they went into a depression right afterwards -- it's comforting to know that someone else had that same experience.

I think it's fantastic that there are so many more accessible sources of information about Follicular Lymphoma like the FLF webinars and this podcast. When I was diagnosed 17 years ago, there was very little of this. I found a Non Hodgkims Lymphoma support group online, which was wonderful for me. The folks in the group had been diagnosed with many different kinds of NHL, including FL. But that led to some tension sometimes, too, as people brought up certain subjects that didn't pertain to everyone.

So at times, I was reluctant to share with the group, especially good news. My feeling was that if I had just had a diagnosiversary, it might make someone feel bad that I was doing well and they weren't. But what I found was the opposite -- when I shared that I had been diagnosed 5 years before, it made people happy to read. I was kind of a role model. People knew it was possible to make it to 5 years. 

So there are lots of reasons to share our stories. And this podcast will be a great way to do it.

So watch the first episode, and think about the kinds of subjects you'd like to hear them address. Their email is available by going to their channel's page. You can let them know what you'd like to hear more about.

I hope you enjoy the podcast, and continue to listen to them. I think it's going to be a very helpful thing for us all.

Looking Back

If you're on Facebook, you might have experienced its "memories" feature. Sometimes it will send you a notification letting you know that, for example, five years ago on this day, you posted something. And then it will share the post with you, and give you the option of sharing it on your page and making it public.

I rarely post on Facebook these, days, though I visit it pretty much every day. A few days ago, it gave me a "memory":

I remember this picture very well. It was taken at a family reunion in West Virginia 16 years ago, and the person whose face is blocked out is a family member that I enjoy spending time with a lot. It's a very happy memory (and not just because there is so much less white in my beard than there is now).

If you've been reading the blog for even a few months, you might know that I was diagnosed  with Follicular Lymphoma over 17 years ago. So this picture was taken about 18 months after my diagnosis.

When I got the memory from Facebook, I texted the person in the picture. "We look so young, " I said. "And I still have that shirt." She laughed and told me that she still had that blue hoodie. 

I was still watching and waiting. It was about 6 month before I started treatment. I've kept that shirt for so long because it has the name Jon Lester on the back. Lester was very important to me (and still is). He was a pitcher for my favorite team (I grew up in Boston), a Lymphoma survivor, but more importantly, he played a key role in helping me explain my diagnosis to my kids. My oldest has always been a baseball fan, and even at 10 years old, he knew about Jon Lester's cancer history. So when I was diagnosed, I told him that it was the same kind of cancer that Jon Lester had, and it helped him see things more positively. (Lester had a different, more aggressive type of Lymphoma, but the details didn't matter at that point. What mattered was that my son knew Lester had cancer, got treatment, and came back to help the Red Sox win the World Series in 2007. 

And if you want to now how important Jon Lester was to me, especially in the years right after diagnosis, then enter "Jon Lester" in the search box at the top of the blog. He shows up in 20 (now 21) different posts over the years.

I wore that shirt to all of my treatments, too. It was my uniform -- my red Jon Lester shirt, an orange long-sleeved "Life Is Good" shirt, an d a pair of dark blue Adidas sweat pants. Very comfortable. And I still have all three items of clothing. I remember going back to the oncologist's office for a follow-up visit soon after I was finished treatment, and having to use the bathroom in the treatment room. I had just come from work, so I was dressed a little better than my old shirts and baggy seat pants. I saw my treatment room nurse and she didn't recognize me. That tells you how sloppy I looked in my treatment uniform. But I was comfortable.

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Memories are a funny thing. And I don't just mean the Facebook kind. It's very easy to see a photo from 16 years ago and remember the great things. Long conversations with a favorite family member. White water rafting on the New River. Massive games of touch football and wiffle ball. Hanging out in a hot tub after the kids are in bed. Looking at that picture brings back all of those wonderful memories and more from our week in West Virginia. 

But not all memories are happy ones, and goodness knows those of who have been diagnosed with cancer have some not-so-happy ones. 

It's tempting to tell you to ignore the bad ones and focus on the good ones.

I certainly have been doing that here. I didn't mention the speeding ticket I got, or the sheer panic we felt when our raft tipped over and our 7 year old starting floating down the river on her own, or the fights between family members that week.

And as happy as my Jon Lester shirt makes me feel now, I didn't mention that I was wearing it when I had an allergic reaction to my first dose of Rituxan. Or when I would lie in bed after I got home from treatment, clutching my stomach from the horrible sharp pain I'd feel afterwards, until I feel asleep from exhaustion. Or the deep depression I felt, starting a few days after I invoked Jon Lester's name to my baseball-loving son, wondering what would happen to him if I wasn't around.

I don't think we should forget those things. 

Not because they were in any way enjoyable. But because we're still here to remember them.

Our memories aren't just souvenirs of the past. They're reminders of all we've been through. And of all we are able to go through and still make it out to the other side. 

Don't forget the past. But don't dwell on it either. Treat your memories like an old t-shirt. Tuck them away in a drawer. But don't lose them. Don't forget they are there. 

Use them to remember just how strong you are.