FLF Webinar on Bad Days

OK, I messed up. My last post, from last Wednesday, was supposed to be published today. But I wasn't paying attention and I just hit the "post" button instead of setting a future date, so that left me with too much time between posts. I've been spending a few days with some family that I don't get to see very often, so I thought I'd write a post and have it all set to go so I wouldn't need to worry about it and I could focus on my nieces and nephews and great-nephews. So much for that plan.

So you're getting a kind of bonus post today. 

I want to let you know that the Follicular Lymphoma Foundation is doing a webinar on January 28 called "Living with FL: Coping with the Down Days." It is happening live at 2.00pm GMT (6.00am PT; 10.00pm UTC; 9.00am ET​). It should be excellent. 

The webinar will be led by Dr. Mitchell Smith, the FLF Chief Medical Officer, who always does a fantastic job with these webinars, asking the right questions and leading the discussion in productive ways. The FLF always includes a medical expert, and this time it will be Surabhi Chaturvedi, an integrative psychotherapist with a background in clinical psychology. She works specifically with patients with blood cancers. And there's always a patient expert, too, who talks about their own experience. This time, it's Dr Claire Hucker, who is a GP with the NHS. In addition to being a medical doctor, she was diagmosed with FL in 2019, when she was in her 40's. She received O-CHOP as a treatment, which was successful. Dr. Hucker should provide  a very interesting perspective on this.

You can read more about the webinar and register at this link. If you can't make it, a recording of the webinar will be posted online on the FLF website, where you can find all of their webinars.

I expect the webinar to have lots of good practical advice for dealing with the bad days that we all have sometimes.

A couple of other resources for you:

The title of the webinar resonates with me. There's a bit of advice that I give other cancer patients (when they ask me for advice) -- it's OK to have a bad day. Sometimes we feel the pressure to be positive, especially because lots of well-meaning tell us that we "need to stay positive." That's usually good advice, but not always. You can click here to read more about what I have to say about having a bad day.   

Another resource is a recent episode of the Follicular Lymphoma Community Podcast called "FL and the Holidays." I know we're past "the holidays" now that's the middle of January, but the episode is kind of timeless. When we have "bad days," it's often for the same kinds of reasons that the holidays can get us down -- we're exhausted, we're overwhelmed, we've set expectations that we can't live up to. All of those things can be highlighted during the busy holiday season, but they happen at all times of the year. So if you need some advice and you can't wait for January 28, watch the FL Community Podcast and get great advice from some other FL patients. (Just ignore their festive hats ad sweaters,)

I hope you enjoy your "bonus post" and take advantage of the good advice I have posted.

Even better -- I hope you don't need it.

Take care, The diagnosiversary post is coming up next.

 

More ASH Reviews

 I'm going through all of the links I have saved from the last month or so, and I have a few more related to ASH that are worth sharing, Not necessarily any new information, but at the very least, it's confirmation that some good things were presented at the conference last month.

The website Medscape published two video reviews of the conference.  The first is called "ASH 2025: The Clinical Impact of New Therapies and Long-Term Outcomes in Follicular Lymphoma." It features Dr. Kami Maddocks of The Ohio State University. She discusses some of the more important presentations at ASH, and focuses on clinical impacts -- how the new information might directly affect current patients.

Of course, she focuses on the data related to Epcoritamab + R-Squared, which she says is "going to change practice." In other words, we're likely to see it recommended for patients who have Relapsed or Refractory disease who are need of a treatment option. She also mentions Tafasitamab plus R-Squared, and the issues related to sequencing CD19-directed therapies. That is, patients who received Tafasitamab kept the CD19 protein on their cancer cells, meaning a teatment like CAR-T, which targets CD19, should be used after Tafasitamab, not before. (The presentation that discussed this was also on The Leonard List for this year.)

Dr. Maddocks also mentions the research that looked at long-term (20 year) follow-ups of FL patients, which found that 40% of patients who received immunochemotherapy (like R-CHOP or R-Bendamustine) were still disease-free after 15 years. And about 20% of patients who watched and waited continue to do so for 15 years. Finally, this study also showed that the risk of Transformation to a more aggressive Lymphoma decreases after 10 years. Dr. Maddocks says this is all important information when oncologists counsel FL patients about long-term outcomes. (This all sounds very familiar to me, but I can't find a link for this presentation, unfortunately, and the video doesn't include it. But it's great news -- I love a good long-term follow-up.) Finally, she discussed the research about GLP-1s and indolent Lymphomas including FL, something else that was on The Leonard List. (You might remember that I was hesitant to discuss that one. Dr. Maddocks thinks it looks very interesting, but there needs to be more data collected about it.)

So lots of good information, with the focus on how it all plays out right now in the doctor's office.

The second video review from Medscape is called "New Options in Follicular Lymphoma From ASH 2025," and features Dr. Michael R. Bishop from the University of Chicago. As the title suggests, Dr. Bishop is interested in some of the new treatments that were presented at ASH. Of course, he starts with Epcoritamab (because that's what everyone is excited about -- he calls it "The Big News" from the conference. He also mentions the presentation on Epcoritamab + R-Squared in untreated FL. He wants to see long-term follow-up to make sure the excellent responses will last, and he points out that it was a very small trial.

 Dr. Bishop also looks at a presentation on the CAR-T known as Liso-cel. In this research, Liso-cel was given to FL patients who were "heavily pre-treated" -- who had already received at least two other treatments. The results were great -- a 97% Overall Response Rate, including a 94% Complete Response. After 36 months, 75% of patients had not yet needed another treatment.  (Sorry -- I don't have a link for this one, either, but it's no surprise that a CAR-T was effective, though Dr. Bishop did point out that there were some secondary cancers in some patients.)

He also discussed another of The Leonard List presentations, this one looking at the Gallium Trial, showing that mutations in EZH2 and CREBBP could help predict success with Bendamustine. This research is important in showing how biomarkers can help guide treatment.

So, again, not much that hasn't been covered already, but I do think it's important to show that multiple Lymphoma experts see certain research as moving us forward. It's hard to see that when just reading abstracts. I enjoy hearing experts tell me what excited them after the conference is over. If you've ever been to a professional conference of any kind, there's a special kind of magic that you feel afterwards, when you have all of this new knowledge that's really exciting. These videos capture just a little bit of that.

More soon. 

 

A Few Approvals

Hello all, and welcome to 2026.

It's been a week since I have posted. I usually try to get something up a little sooner than that. But I started the new year with some computer problems, and it's taken a few days to get things fixed. Thankfully, I'm back to writing. I supposed I could have written a blog post on my phone, but honestly, I'm just too old for that. The buttons are too small, the words are too small, and my patience is too small. I wear progressive lenses for a reason. 

On a related note, Spotify gave me my "Listening Age." If you are unfamiliar, the music steaming service Spotify ends the year by giving you some data about your listening -- the songs or artists you listened to most -- that kind of thing. But they also give you a "Listening Age," a measurement of how old the music is that you listen to. So if you listen to a lot of contemporary music, you'll have a young Listening Age. My Listening Age is 69. I'm not only too old to write with my phone, I'm also too old to listen to anything that wasn't played at my high school prom.

So, just to sum up: 

My biological age is 58.

My Listening Age is 69.

My Lymph Node Age is about 93.

Just so you know what you're dealing with as we enter the new year.

**********

Unfortunately, I also have a hard time reading on my phone, so I'm behind on Lymphoma news to share with you.

So I'll pass along some of the approval news that has happened in the last few weeks. I haven't been able to share it because I have been focused on ASH.

The big Follicular Lymphoma approval news has been the FDA approval of subcutaneous Mosunetuzumab.  Mosunetuzumab was the first bispecific approved for FL (though Epcoritamab has been in the news a lot more lately). A quick reminder -- bispecifics work by attaching themselves to cancerous B cells, and then also to T cells, which are immune cells that can eliminate the cancer cells. Up until now, Mosunetuzumab has been administered intravenously, through a vein in the arm, over a period of 2 to 4 hours. With the subcutaneous injection, that time is reduced to about 1 minute. A clinical trial showed that the subcutaneous version was as effective and as safe as the IV version. This is, if nothing else, a Quality of Life issue, with less time spent in a hospital or clinic, and more time doing other things. Ideally, this will also bring the cost down. 

In non-USA approval news, the European Union approved Minjuvi (Tafasitamab) plus R-Squared (Revlimid/Lenalidomide and Rituxin) for patients with Relapsed or Refractory Follicular Lymphoma. I wrote about this in November, when it had been given it's almost-approval, but now it's official.

Also, Japan's Japan's Ministry of Health, Labour and Welfare approved the same Tafasitamab for the same population. I briefly mentioned both of these approvals in my "predictions" post, but I thought they deserved a little bit more attention than I gave them then.

There are a few more interesting FL-related articles that I have seen fromm the last few weeks. My old eyes will have an easier time reading them, and my old fingers will have an easier time writing about them, so look for them soon. And of course, look for my diagnosiversary post next week. I'll have some things to say.

 

How Were My 2024 Predictions?

This will be my last post for 2025, so I want to revisit my last post from 2024, called "Year-End Predictions." Just for fun, I made three predictions about Follicular Lymphoma for 2025.

I'm guessing a lot of you saw the calendar turn to December a few weeks ago and thought, "I wonder how Lympho Bob's year-end predictions went? I've been dying to know if he was right, because he's always so right about everything!"  Well, here we go. Your wish is about to come true.

My first prediction was "Tafasitamab won't be the 'game-changer' that the headlines predict it will." I was right about this.

At last year's (2024) ASH conference, there was a lot of excitement about Tafasitamab (also known as Monjuvi). Tafasitamab is a monoconal antibody, and the results of a stage 3 clinical trial were presented at ASH, where Tafasitamab was combined with R-Squared (Rituxan and Lenalidomide).  I had written about it a few times after ASH. There were lots of commentaries that talked about how great the combination was, and how it would most likely mean Tafasitamab + R-Squared would become the default treatment for Relapsed/Refractory Follicular Lymphoma. That hasn't happened. As I wrote a year ago, it takes a lot to change an oncologist's habits, and unless there is a huge change in survival statistics, there will probably be some change, but not a lot of change. The "game-changer" headlines are often clickbait, getting people like me and the rest of you Cancer Nerds all excited and reading their articles. It seems like there is always some new great treatment that will change things for us. To be sure, treatments are getting better over time (the difference in the choices I had when I was diagnosed about 18 years ago, and those available now, is incredible.) But as I get older, I get more suspicious of news articles that are a little too excited about these things. Tafasitamab may end up being an important part of our treatment choices, but it isn't yet. It was approved by the EU a week ago, and by the Japanese health ministry about the same time.

My second prediction was "Epcoritamab will cause some concerns." Epcoritamab was another treatment that caused some excitement at the 2024 ASH conference. But it also caused some controversy. The effectiveness numbers were great, but the safety raised some questions. There were a few more deaths than were expected, but they were explained by the fact that the trial took place during the Covid pandemic, when some of the trial participants had lowered immunity. As I said in the post, "my gut tells me those concerns haven't been completely answered." Well, as you know if you've been reading lately, Epcoritamab was this year's darling at ASH, and the "game changer" language for Tafasitamab from last year was applied to Epcoritamab for this year. So I'm going to say I was wrong about this one. There were no new safety issues in the year that followed, and Epcoritamab might well be the great treatment that the headlines say it will be. I sure hope so -- the numbers are fantastic. But time will tell.

My third prediction was "There won't be any major changes to the FDA approval process." I'm thinking I'm right about this one, too. Last year, there was talk that the FDA might cut back on surrogate endpoints and focus more on Overall Survival. In other words, they would ask for more long-term data before making decisions, That didn't happen, but there was plenty of controversy at the FDA anyway. I won't get into it. If you live in the U.S. and you follow health news, then you know. There has been a change in leadership, some instability in key positions, and controversies in many areas of pubic health. I was hoping to find a link to an objective source that described the year that the FDA had, but I couldn't find one. I will say, despite the controversies, it doesn't seem to me that the oncology world was effected negatively by it. FL treatments were approved, and people remain excited. The approval process has been largely the same as it was before. We'll stay hopeful that it stays that way, and if it does change, it will be change for the good.

There are a couple of lessons here.

First, I'll say what I said last year when I made the predictions -- remember that I'm not an oncologist or a cancer biologist. When it comes to cancer advice, the best person to talk to is your own oncologist. It's fun to make predictions, but I'd never make a prediction that I thought would affect an individual's life. I wouldn't want that responsibility -- that's not fun. Sure, I got two right, but the one I got wrong, I got really wrong. If your oncologist is a Lymphoma specialist, ask them what gets them excited about Lymphoma research these days. Then watch their eyes get big and their voice get a little louder from excitement. That's the real fun.

The other lesson is a reminder that one year is not a lot of time when it comes to cancer research. We move forward, but in small steps -- rarely in giant leaps. And we don't know for a while just how big a leap it is. Best to enjoy the small victories when we get them, and hope they turn into something big.

I hope your 2025 finishes up wonderfully, and your 2026 brings you good health and happy times.

I'll be back next year. Still lots of small victories to write about.

Take care.

Peace

I want to wish a Merry Christmas to all of you who celebrate. 

And whether or not you celebrate, I want to wish you Peace. 

"Peace on Earth" is a phrase that is often associated with Christmas. It was part of the message that angels gave to shepherds in announcing the birth of Jesus. It's the one I always gravitate to at this time of year.

I've given this same message on Christmas many times to you all, and it feels like I'm just repeating myself. As much as I want there to be peace on earth every year, it seems like there is less of it. Even Pope Leo a couple of days ago asked the world for just 24 hours of peace. 

And it's not just conflicts between nations, but within nations, too. Where I live, there is so much division, so many people who won't even talk to one another because of what they see as their differences. They can't see that they have so much more in common. That turmoil in the world makes it hard to feel good inside -- to have some inner peace. 

And inner peace is what I wish for us all. 

I'm coming up soon on my 18th diagnosiversary. You'll read more about that in a few weeks.  In many ways, life as a Follicular Lymphoma patient gets easier with time. You come to believe that you really can live a "normal" life with this disease -- whatever "normal" means.

At the same time, 18 years as an FL patient means 18 years of an aging body. I was a young, healthy man when I was diagnosed at 40 years old.  I was running in 5k and 10k races, starting to train for a short triathlon, enjoying time with my young kids, and telling myself that 40 wasn't so bad. Now I'm closing in on 60, juggling three different Electronic Medical Records portals, arranging pill bottles so I don't take the wrong ones at the wrong time, and going to physical therapy twice a week for a knee problem that came out of nowhere. It's hard feel inner peace when you hurt your back just by sneezing too hard.

But I also remind myself that my wife and I walk two miles every day. I had a cardiac stress test not too long ago that the doctor described as "excellent for my age and gender." We're going to the Grand Canyon later this year, something we had planned to do almost 30 years ago. My FL is stable, and my  dermatologist didn't find any new skin cancer the last time I saw her. There's lots to be thankful for.  Lots of reasons to feel some peace.

I try to find peace in the small things. I can always find peace there.

I hope you can find some peace today, too. Maybe looking at the whole world might not do it. Maybe looking at your small part of the world might not do it, either.  

Look for the small, quiet places were peace tends to stay. Go there for a little while. Enjoy it.

I wish you a Merry Christmas, and many, many peaceful moments to come.

 

 

ASH Review: Why FL Cells Don't Go Away (Maybe)

 Another ASH review. This one is is for anstract #553: "Longitudinal single-cell profiling of the bone marrow heterogeneity identifies the T-cell niche supporting cancer persister cells in follicular lymphoma."

This is the presentation mentioned by Dr. Jessica Okosun in the Follicular Lymphoma Foundation's video, which I posted a couple of weeks ago.  Dr. Okosun was excited about this because it potentially revealed some important new information about FL biology.

I'll be honest, I don't usually focus much on the biology-related research that I come across -- the kind of articles that tell us about biomarkers, and cells, and genes, and Tumor Microenvironments.  It's all incredibly important. But, honestly, it's also hard to read (there are usually strings of acronyms and initials that I get mixed up with one another), and it's also usually information that may lead to new research, that may eventually lead to clinical trials, but that may not show up for many years. It's much more fun to write about a stage 3 clinical trial that might have implications next month than to write about a protein or a gene that might not affect my treatment until 2038.

But, as I said, this kind of research is very important, since its the basis for the things that show up in the treatment room years from now. So I'll do my best to explain this one. But keep in mind that I'm not a cancer biologist. I will almost certainly oversimplify this.

The idea behind the research is the understanding that, since FL has a way of hiding (which is why so many of us are asymptomatic) and then of coming back after treatment, there must be something called FL cancer precursor/persister cells, or CPC. A persister cell is a cancer cell that is resistant to treatment in some way, so even if it seems like the disease has been successfully treated, those CPCs are hiding somewhere and then come out again later, and the disease relapses.

In Follicular Lymphoma, researchers already know that FL is hard to treat because of the Tumor Microenvironment (TME) -- not the cancer cells themselves, but a lot of the things that are happening around the cancer cells. For example, FL cells are infleunced by Treg (Regulator T Cells, a type of immune cell), activated Tfh (T-follicualr helper cells, another immune cell), and dysfunctional cytotoxic T cells (another immune cell that finds and kills damaged cells, including cancer cells).

(I could go more into these different types of T cells and what they do, but I don't think that's going to help explain anything. It will probably just confuse you and me.)  

However, as the abstract points out, with FL, researchers still haven't been able to identify the specific CPCs (those cancer cells that are hiding someplace) or the cells in the Tumor Microenvironment that might be helping the FL cells stay alive.

But they do know that the bone marrow might be a good place to look. \

So for this research, that's just what they did.  

The researchers took bone marrow samples from 19 patients who had been given Rituxan. They took a bone marrow sample at diagnosis, and another one 12 months after they had received Rituxan, so they could compare them. They also took bone marrow samples from 5 healthy donors so they culd compare results to them as well. 

What they found wasn't surprising. Remember that all of the Tumor Microenvironemnt examples were of T cells -- different types of immune cells that have some kind of influence on FL cells. They found that the "T-cell landscape" in the bone marrow was "highly heterogeneous" in the samples from FL patients. This isn't surprising to me because FL is a highly heterogeneous disease -- it acts differently in each one of us. They compared those to the "healthy" patients, whose T-cell landscapes were more uniform. 

More specifically,  they found that the samples from the FL patients had a "decrease of cytotoxic
CD8 T cells and naive CD4 T cells and an increase of IFN-responsive CD4 and CD8, Treg, Tfh-like, and
memory CD8 T cells." (I told you, it gets hard to read with all of the initials.) Those same cells that were increased are the ones that were associated with poor outcomes -- POD24 (where the disease returns within 24 months) and Time to Next Treatment less than 30 months. The things that decreased are the things that are associated with a better outcome -- longer Progression Free Survival and Time to Next Treatment.

There are more details about how some other parts of the Tumor Microenvironment and the differences they found, but I think you probably get the point. They seem to have identified some biomarkers that could show early on whether there will be good or bad outcomes, and these are potential targets for new treatments. 

And just to be clear about how they did this -- they took a sample of bone marrow and looked at it. Then they gave some Rituxan to get rid of B cells. And then they took another bone marrow sample to see what was left. And they found some important things -- a "preserved niche" in the bone marrow that could support survival of some (fairly rare) CPCs. It's not just cancer cells surviving treatment, it's also a bunch of immune cells that are protecting those cancer cells and allowing them to grow and persist. 

Is this the piece of the puzzle that we need to fix everything? It's impossible to tell at this point.

But I'm going to take Dr. Okosun's excitement about it as a very good sign. 

Still sifting through some more ASH commentaries to see if there are other things (besides Epcoritamab) that people are excited about. More soon, whether it's from ASH or someplace else.

 

ASH Review: Epcoritamab

If there was a Big Winner for Follicular Lymphoma at ASH this year, it was without a doubt Epcoritamab.

Epcoritamab is a bispecific antibody, meaning it has two mechanisms working. On one side, it attaches to a protein on the surface of the cancerous B cell, and then also attaches to a protein on a T cell, an immune cell. In this way a bispecific uses the body's immune system to treat the cancer.

The research that has everyone so excited is the results of a phase 3 clinical trial, also published in the prestigious medical journal The Lancet, as "Epcoritamab, lenalidomide, and rituximab versus lenalidomide and rituximab for relapsed or refractory follicular lymphoma (EPCORE FL-1): a global, open-label, randomised, phase 3 trial."

The results really are pretty exciting. This is a phase 3 randomized trial, which means the researchers split a large group of patients into two, so they could directly compare the results of two different  treatments. This kind of trial is considered the most accurate (rather than comparing one group to the results of a trial that happened a few years ago). In this case, one group was given R-squared (Rituxan + Lenalidomide/Revlimid), while the other was given R-Squared plus Epcoritamab. There were 448 patients in the trial (a pretty large number), and all had relapsed or refractory disease (they had already had treatment, and it didn't work or no longer worked).

With a median follow-up of 14.8 months, the Overall Response rate for the Epcoritamab group was 95% (versus 79% for the R-squared group). The Complete Response Rate was 83% for Epcoritamab and 50% for R-squared. 

The Progression-Free Survival for the Epcoritamab group was higher, with estimated PFS of 16 months in 85.5% of that group versus 40.2% in the R-squared group. (They had to use an estimate because some patients hadn't reached the median time yet.)

With a "triplet" -- a combination of three different treatments -- like this one, safety is always an issue. Three treatments might mean three times the effectiveness, but can also mean three times the side effects or adverse events. Grade 3 (serious) adverse events were higher for the Epcoritamab group (219 of 243, or 90% of that group, versus 161 of 238, or 68% of the R-squared group), which was to be expected. Cytokine Release Syndrome, which can be very dangerous, was low grade for the Epcoritamab group, and was managed by the doctors.

I was going to link to a few videos of Lymphoma experts talking about the results, but they're kind of all the same thing, with the expert repeating the numbers and talking about how exciting this could be (like this one from OncLive). And I do think it's exciting, having finally seen all of the data.

Any skepticism I have comes from whether or not patients will have access to it. It does seem to me that bispecifics are probably more accessible than CAR-T (the two are often talked about together, including by me). CAR-T is great, but more expensive (as one recent bit of research pointed out), which is going to make bispecifics a more popular choice for those who make those decisions about cost. But there are going to be still less expensive options for R/R patients, probably. I hope FL patients can get the best treatment available, no matter the cost.

This isn't the last we're going to hear about Epcoritamab. There were many ASH presentations on this treatment, for many different types of Lymphoma. Two that I thought were interesting were the results of a phase 2 trial of Epcoritamab and Rituxan for untreated FL patients (97% Complete Response Rate in a small trial), and Epcoritamab and R-squared in untreated FL patients (95% Overall Response Rate). 

But it's that randomized, phase 3 trial that really makes me think that Epcoritamab will be around for a while. A large number of patients over a long period of time. It seems pretty likely that it will be a regular part of treatment programs. It might take a while to get to that point, but it probably will.

I'm still looking at ASH abstracts and watching and reading commentaries. I'll have more soon.