When You Need to Take a Break

A long-time reader added a comment on my post about visiting the Grand Canyon last month. I always like to hear from people who have been reading for a while. 

This reader also pointed out that lately she has been stepping back from reading about Follicular Lymphoma. And that's good news, too.

It made me think about a message I got from a reader several years ago. I don't remember now if it was a comment or an email. But the reader apologized for not being in touch for the same reason as the recent commenter -- he was just not thinking about FL as much as he had.

I remember telling him that an apology wasn't necessary. It was an excellent thing that he had stepped back from reading and thinking so much about the disease.

This is one of several reasons why I don't monetize this blog. No advertisements. No subscriptions. No sponsors. No merchandise.  I know lots of health advocates who do those things, and I wish them luck. I know some of them have health issues that make it very hard for them to hold a full-time job, and the monetizing of their online accounts is an important source of income for them. I know I'm very fortunate to not have to be in that situation. 

But I also know that monetizing this blog would change things. A lot. For one thing, I'd be panicked every time I had a reader say that they were stepping back from reading so much about FL, and scrambling to figure out how to keep them. I don't want to have to put that much energy into this. I already put enough into it. 

It's always interesting to look at this blog's analytics -- the data that Google sends me about readers. To be clear, I don't receive any information about you as an individual. Unless you tell me who you are in a comment or an email, I have no idea who is reading the blog. 

But I do get information about how many people have accessed the blog every day, and I can see how many people from a particular country have read that day. (I've had readers from over 80 countries, which is really very cool to me.) So sometimes I will see a sudden spike in the number of readers from a particular country, and then maybe I'll get an email from someone in that country. I can make the connection -- that reader and maybe members of their family have gone back and read a few years' worth of entries. And then the activity from that country dies down. Maybe after a few weeks or months, I don't get much activity at all from them. 

I can see the rhythms of readership. Sometimes I get a whole lot of readers. Sometimes I don't get many. And then I get a lot again. 

And that's fine with me. When someone is newly diagnosed, they are looking for information. I'm happy that I can be a trusted source for them. Maybe I get lots of comments from them, maybe some emails. I welcome all of them. I love hearing from readers and I'm happy to help in any way I can, even if it's just listening to your story. (But I can't give out medical advice, because I'm not a doctor.)  

And that's the nature of this disease for many of us. It comes to us as a surprise, and it grows slowly enough that we can just not think about it much after a while. As much as I love to hear from readers, I also love to hear that someone has "graduated" and they don't think about me and the blog anymore. I don't take it personally. I recognize the rhythms.

For those of you who do drift away, go with my blessing. And if we've had some long communications by email in the past, but not in the present, know that I think about a lot of you and wonder how you are doing. I assume you're doing well. I'm tempted to email you sometimes to check in on you, but I also know that if you're in a good place, you probably don't need the reminder about the disease that you would get from me. 

So please drift away if you need to. I don't need the readership. I love having it, but I don't need it.

I plan on being here for a while.

Take care, everyone. 

 

Treatment Selection in R/R Follicular Lymphoma

The oncology website OncLive has another of their interesting video series on Follicular Lymphoma. They post these every few months -- a small panel of experts discussing issues related to FL. A lot of times, they discuss current treatments. I find it helpful to hear different Lymphoma specialists talk about how they handle particular situations, and explain their reasoning. 

The current video series is called "Optimizing Sequencing Strategies in R/R Follicular Lymphoma," though so far they only have one video posted. It's called "Navigating Treatment Selection in R/R Follicular Lymphoma," and as the title suggests, the Lymphoma experts talk about some of the factors that they consider when they are deciding on treatment for a patient who has Refractory or Relapsed disease (that is, the treatment they already had stopped working or didn't work at all).

The experts are Dr. Loretta Nastoupil from Southwest Oncology in Colorado, and Dr. Amitkumar Mehta from the University of Alabama - Birmingham. This is just the first part of a longer conversation, but they still had some good things to say.

Their focus here is on how they make decisions about which treatments to consider for a R/R FL patient. Dr. Nastoupil lists a few factors that she considers. She points out that FL is a very heterogeneous disease -- each patient is different. She says she sees patients in their 30s up to their 80s. Those groups will have very different goals. Some patients are extremely fit, with few comorbidities or other health issues to consider, which some are very frail. Some may have received single agent Rituxan (like me) while others had aggressive treatment that may have caused additional health issues. And of course, there is the issue of patient preference. Some patients want an aggressive treatment that gives them a chance at a very long remission. Others might prioritize a less aggressive treatment that does not affect their day-to-day lives as much but also is likely to mean treatment will be necessary within a few years. All of those factors make it hard say that there is an ideal second treatment.

Dr. Mehta briefly discusses the treatment landscape. He points out that two approved treatments have been pulled from the market for different reasons (PI3K inhibitors and Tazemetostat), but that some newer treatment regiments are also very promising. (He teases two of them, and says they will be discussing them later, probably in another video in the series. I assume they are Epcoritimab + R-squared and Tafasitamab + R-squared.) He says that in choosing a treatment, he tries to balance several factors -- how effective the treatment is, what kinds of side effects can be expected, and how those things  fit with a patient's individual goals. 

(I always like when Lymphoma experts make a priority of patient goals.) 

The rest of the series should be very good. It's not necessarily a presentation of anything new. That's usually how these video series work. It's more of  summary of where we are. I think that's really valuable, too.

One more thing that's worth pointing out. Dr. Mehta makes a comment about patient survival. He said when he was in training, they used to say that FL patients had a 10-15 year median survival. (He must be young. It was 8-10 years when I was diagnosed.) But he says that FL patients these days will probably have a "normal life span." Think about it. If the typical FL patient is 60-65 years old, and FL has a median Overall Survival of 20 years, that puts you right into the average lifespan of someone in the U.S.

And for you younger folks, remember that "median" means the midpoint. So if the median OS for FL is 20 years, that means half of FL patients will live longer than 20 years. I was diagnosed at 40. I fully expect to live to a normal life span. Dr. Mehta attributes this to having more and more effective treatments for R/R FL than we had in the past.

I've mentioned this before, and it's worth mentioning again.  Several years ago, I had a reader tell me that her oncologist said "If we can keep an FL patient alive for 5 years, we can keep them alive for 50." It's the same logic as Dr. Mehta's. The number of available treatments these days is so much greater than when I was diagnosed 18 years ago. We have options. And we have even more options being developed all the time.

That's what I like most about these videos. They give me hope. 

Lymph Nodes and Lymphoma

I don't usually write about stuff that's too "science-y." By that I mean the research that starts the process of trying to find a treatment. Sometimes I avoid it because it could be years before that research results in something useful (if it ever does). And sometimes it's because it's really hard to understand and trying to explain it would be difficult (for me and for you the reader).

But I read some Lymphoma research this morning that I think is fairly easy to explain, and which might actually be useful relatively soon.

A large group of researchers just published a piece in Nature Cancer called "Reprogramming of stroma-derived chemokine networks drives the loss of tissue organization in nodal B cell lymphoma."

The research is about the "architecture" of lymph nodes and how the nodes change with different types of Lymphoma. The researchers think that understanding those differences might help explain why some Lymphomas are slow-growing and some are fast-growing. And understanding those difference could lead to new treatments.

First some background. I think we all know what lymph nodes are. Many of us (though not all of us) became very familiar with them because they swelled up before we were diagnosed. And now every time we have any kind of bump or lump on our bodies we run to google to find out if there are lymph nodes in that part of our body. Lymph nodes are part of the immune system. They filter out bad things and help fight infections because they contain immune cells. When they are working well, they swell up. When they aren't working well, they stay swollen because there are too many immune cells -- a blood cancer.

The folks who did this research looked at the "architecture" of lymph nodes -- how they are divided up inside. Architects often design buildings with lots of apartments, so imagine a lymph node in that way. It's one structure with lots of apartments, and each apartment has its own separate family. So one apartment contains some B cells, a type of immune cell that is often called out first when there is an infection. (As you probably know, Follicular Lymphoma is a cancer of the B cells.) Another apartment contains some T cells. There are a bunch of different types of T cells, and they generally get called into action when the infection gets a little more serious. 

Now imagine there is a manager for this apartment building, someone who keeps the peace and make sure everyone is getting along. In the lymph nodes, this is what is called a Stromal Cell. These cells have a bunch of different jobs, but in the lymph nodes, they help keep everyone happy. They know that the B cell family in apartment 2A doesn't get along with the T cell family in 3B, so the Stromal cell makes sure they don't leave the apartment at the same time. When things are working well, this situation works out fine. The cells all get along, there's no cancer, and when there is an infection, the right apartment gets called on to do their job.

What the researchers found was that this same situation also happens when there is a slow-growing, indolent cancer like Follicular Lymphoma. The B Cells might have a bigger apartment in FL, but the architecture pretty much holds. Everyone does their job.

But when the cancer turns more aggressive, like with Diffuse Large B Cell Lymphoma, those walls don't hold. The Stromal Cells can't keep everyone in their apartment at the same time. It seems like that is where the problem begins. Imagine the apartment manager doesn't show up for work one day, or maybe had a few too many drinks the night before. He can't control all the cells in their separate apartments. 

What happens from there is a "vicious cycle." As T cells are called into action, they release pro-inflamatory signals. Basically, they start ringing the doorbells of other T cells and asking them to come out and play. And then those T cells start ringing the door bells of other T cells. Not only do they all come out and play, some of them stay inside and start knocking down the walls of the separate apartments. When this happens, it usually results in an aggressive Lymphoma like DLBCL. 

Wat the researchers found that is so important is that first, it's a problem with the Stromal Cell that seems to cause the bigger problems. And second, this loss of architecture isn't a result of the problem, it's the cause of the problem. 

My explanation is, of course, an oversimplification. The lymph nodes don't have actual walls dividing things. It's more like spaces where different cells hang out. But the comparison works -- when the apartment manager doesn't do its job, the building is a mess.     

Because the researchers seem to have targeted one cause of all of this, the Stromal cells, they are hoping that they can use that information to more accurately diagnose a patient, and then potentially find a treatment that targets the Stromal cell or some other part of the process that leads to the problem. 

It's very early research. It could be years before anything comes of it, if it ever happens at all.

But it's one more small piece of the puzzle that is Follicular Lymphoma. And that's something to be hopeful about.

Surviving in the Grand Canyon

I'm back!

You probably didn't even know I was gone, but I'm back from a week in Arizona, about 2500 miles from my home. My wife and I spent a week in Sedona, the Verde Valley, and the Grand Canyon. 

Anyone who has been to the Grand Canyon will tell you that words can't describe it and pictures can't capture it. But I'm going to give you a picture and share some thoughts anyway.

 

My wife and I had actually planned a trip to the Grand Canyon almost 30 years ago. I was going to Phoenix for work, and we had hoped to both go and spend a day or two at the Canyon. My wife was pregnant at the time with our oldest, and about a month before the trip, the doctor put her on bed rest because of a complication. Not only no travel, but no getting out of bed for more than a couple of minutes at a time. It was a very stressful few months. But mom and baby stayed healthy, and we had a beautiful baby boy. 

So now, almost 30 years later, we had the chance to try again, and we took that opportunity. We traveled with a group called Road Scholar. They aren't sponsoring the blog or anything, but I'm going to mention them because we've enjoyed our trips with them. They handle the details and make it easy for us to travel. We're at a point in our lives where we are happy to let someone else book our hotels, plan our meals, and do the driving. We just show up and enjoy ourselves.

As I said, words can't really describe something like the Grand Canyon, considered one of the seven natural wonders of the world.  And really, the details don't matter. But I will say that my wife and I spent a small amount of time on the Bright Angel Trail that goes down into the Canyon. We didn't go far -- less than a mile of the 16 mile trail. It was very hot and we were feeling the thin air. But we'd learned that less than 1% of the people who visit the Grand Canyon ever go below the rim. We felt like we had to have that experience.

Even going just a few hundred yards down the trail gives you a completely different perspective. You see things that you can't see from the rim. Your view is completely different. You become a part of something that 99% of the people around you are not a part of.

And for me, that's an important part of being a Cancer Survivor. 

My wife and I are getting older. And with age comes the usual slowing down. One or the other of us seem to have a new doctor or a new medication or a new diagnosis every six months or so. We're still reasonably healthy.  But we know that can change. We want to experience some things now while we can. For us, that means making travel a priority.

I mentioned the 30 year delay in seeing the Grand Canyon for a reason. I think lots of us put off doing things that we'd always wanted to do. For us, life got in the way. We had three kids, and dealt with everything that comes with having kids. They tend to take up your time, and your priorities change. And that's fine.

But then cancer comes along, and priorities shift again. There are so many more "what if" thoughts that come into our heads. Sure, I'd like to travel , but what if I pay for this trip to [insert your dream trip here] and the Follicular Lymphoma comes back? What if I feel awful while I'm traveling? What if I'm so worried about it all that I can't really enjoy myself?

We got tired of the "what if" thoughts and decided to just go with it anyway. There's always a "what if." We can't let that get in the way. Because there's one thing even worse that feeling unwell on a trip. It's looking back in 10 years and saying "I wish we would have done it anyway." If the Lymphoma isn't going to go away, we just pack it in the carry-on bag with the sunscreen and the granola bars. There's no sense in sitting at home staring at each other -- me, my wife, and the disease. It's coming with us. But we're all going.

Because that's what Survivorship is all about -- deciding how you will live your life after the diagnosis. 

You are the one who decides.

For us, we have decided that there's too much of the world we haven't seen, and we want to see it while we can.

Maybe you're not able to see the Grand Canyon, for whatever reason. You can't walk down from the rim and get a new perspective on the world. 

But I'll bet there's plenty of the world you haven't seen that's already all around you.

My wife tells the story of living just outside Washington DC. One year when she was in her 20s, her brother had returned home and the two of them went for a walk in downtown DC. They were walking near the Washington Monument when they realized that neither of them had ever been to the top of the monument in their whole lives, despite living 10 miles away. So they want to the top, and they saw the beautiful views of their hometown.

They didn't travel 2500 miles to do it. They traveled 10. And they changed their perspective and saw the world in a new way.

That's Survivorship. It doesn't have to take a lot.

I hope you'll do something fun today, maybe something you've put off for a while. I hope you'll do something to change your perspective on the world and your life. If you are able, I hope you'll start planning that trip you always wanted to take. 

You are the one who decides what your life will be after diagnosis. Don't worry about the disease. Bring it with you and have a great time. 

 

FLF Webinar on Health Data

The Follicular Lymphoma Foundation's next webinar will be "Your Health Data: How It Powers Research." It will happen on Friday, March 27, at 7am PT / 10am ET / 3pm UK / 11pm UTC. 

As with all of the FLF webinars, this one will feature a Lymphoma expert and a patient or caregiver. The expert is Dr. Peter Martin from New York Universioty Langone's Perlmutter Cancer Center in New York City. He is active with a group that promotes clinical trials for Lymphoma. The caregiver is Cris Carrigan, whose wife was diagnosed with breast cancer. He also has a professional background in cancer data. He is involved with a charity in the UK called  Use MY Data, made up patients, relatives, and caregivers who encourage cancer patients to allow their data to be used for research.

Use MY Data is an interesting organization. They don't hold any patient data. They encourage patients to allow their data to be used in clinical trials and other research. I don't know of any similar organization in the US.

The fact that such an organization even exists says something important.

I completely understand patients' reluctance to share their data. We live in a world where our data of all kinds -- financial, personal, medical -- is in danger of being stolen or shared. And we want to keep it close. Like I said, I understand. I've been given opportunities to work on certain projects that seemed interesting, but then I was told my medical records would need to be accessed. I backed away. I'm happy to share information if I have a good sense that it's going to help others (that's the whole point of this blog, after all).  But I'm crazy about the idea of giving unrestricted access to my electronic health records, especially if I'm not getting clear answers about how it will be used.

But that doesn't mean I would never share it under the right circumstances. If there was data that I thought would be helpful in finding a cure or helping other patients, I'd absolutely share it.

Think about it. If there were a large database of patient information that could be accessed by researchers that could help them better understand Follicular Lymphoma, wouldn't that be great?

That's where a group like Use MY Data comes in. Their mission is to encourage data use, but also to promote responsible and accountable use. 

Still skeptical? Understandable.

Then attend the webinar and see what they have to say.  And if you can't attend live, remember that recordings of all if their webinars are available later on.

I think it's going to be a very interesting session. 

No More Tazemetostat

The news came out this week that the makers of Tazemetostat will no longer offer this treatment to patients, including patients with Follicular Lymphoma. There are too many concerns about patients developing new, different cancers.

They made an announcement about a month ago that they were stopping a clinical trial that was testing it, and now they have decided to just pull it from the market completely.  

Tazemetostat is an EZH2 inhibitor. It works by inhibiting or stopping an enzyme called EZH2, or Enhancer of Zeste Homolog 2." This enzyme is controlled by the EZH2 gene. EZH2 keeps tumors growing, so when it's not doing its job, it needs to be inhibited -- stopped by Tazemetostat. About 20% of FL patients have an issue with their EZH2, though it can also be effective on patients that don't have that particular mutation.  

Tazemetostat was approved by the FDA in 2020 based on its ability to help that 20% of FL patients -- it was the first treatment that successfully helped that group of patients. The FDA approval was accelerated, meaning it was approved based on a small phase 2 clinical trial, rather than the usual, larger phase 3 trial. The accelerated approval, as always, is based on continuing research. A larger phase 3 confirmatory trial must be run to make sure the treatment is as effective and as safe as the smaller trial suggested.

Accelerated approval can be great. But sometimes the phase 3 trial that comes after approval shows some problems. And in this case, that problem was that the treatment may be causing secondary cancers. I haven't seen anything about how many patients developed the new cancers, or what kind of cancers. 

If you're wondering what happens to the patients in a cancelled trial: in this case, they will continue to receive treatment. The trial (called SYMPHONY-1) involved 2 groups. One received R-Squared (Rituxan and Revlimid) + Tazemetostat, and the other received just R-Squared. So patients who were enrolled in the trial will all continue to receive R-Squared. They won't be left without treatment. 

I have mixed feelings about accelerated approvals. They make new treatments available to patients who might need them. But they also risky in that they haven't gone through the full process that other treatments have gone through. On the other hand, even if there had been a phase 3 trial, the patients who volunteered for it would still be dealing with the same risks. It's all very complicated.  

The unfortunate part for all of us is that we have one less treatment available to us. And for those with the EZH2 mutation, that's even more unfortunate.  

But we can stay hopeful. There are lots of treatments available to us, and many more potential treatments on the way. 

 

 

More on the 15 Year CHOP Follow-Up

As I wrote in my last post, I have been looking for commentary from Lymphoma experts on the 15 year follow-up of FL patients who received CHOP. The researchers are suggesting that 42% of patients in the study were cured. I've been looking at Twitter/X, where there is usually a decent amount of commentary about Lymphoma, as well as in all of the google alerts I usually get.

There really hasn't been a whole lot of commentary. Most of what I have seen has been repeating the results of the study, rather than giving an opinion on it. One of the very few comments I have seen came from Dr. Mitchell Smith, the Chief Medical Officer for the Follicular Lymphoma Foundation. In a Facebook post from the FLF, he was quoted as saying:

"These findings are encouraging and confirm that some patients have very long-term remission after treatment. The challenge remains that we cannot yet predict which patients will be in this group. Follicular lymphoma is a complex cancer, and many patients live with the disease for many years with different treatment approaches. Studies like this help us better understand long-term outcomes while reinforcing the importance of continued research."​

 

The response is measured. It is positive and recognizes the importance of the research, but also makes it clear that there is more work to be done. The more I think about the study, the more this reaction makes sense. We've always known that some treatments give some patients very long remissions, not just CHOP. As I mentioned in the comments last week, I know a few people who have had RIT and are still in remission over 20 years later. That can be true for Stem Cell Transplants as well. And while I have never technically been in remission (I've never had a completely clear scan), I've been living with the disease for 16 years without needing another treatment, after I had six rounds of Rituxan. 

 

What's different here is that this research looks closely at a group of people who received the same treatment. A story about one person in remission is an anecdote, not a research study. This research is large enough, long enough, and rigorous enough, to have its authors dare to use the word "cure." But there is still work to be done, as Dr. Smith says.

 

Overall, I'd say there is reason to celebrate, but not to rest. It reminds me a little of the scene from the movie Elf (one of my family's favorites). Santa returns from delivering toys and says to the elves "We had another successful year!" The elves cheer, and Santa says, "And now it's time to start getting ready for next year!" The elves immediately go back to work. Worth celebrating, but there's work to be done.

 

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Speaking of the Follicular Lymphoma Foundation, they have started a new series on their blog called "Science Simplified." In a series of posts, they will discuss some current research in FL in ways that make it easy to understand. Their latest is called "Who Needs Treatment and When?" It discusses some of the research at this year's ASH conference, focusing on GELF criteria. GELF is a French group, Group d'Etude des Lymphomes Folliculaires. In 1997, they proposed a set of criteria for when FL needs to be treated, and when a patient can watch and wait. The FLF blog post discusses an ASH presentation that examines the GELF criteria and how doctors make decisions about when to begin treatment. 

 

You Cancer Nerds will enjoy reading about research. And the rest of you (especially those of you who are watching and waiting) might enjoy reading about the practical implications of the research. 

 

More to come soon. Thanks for reading.