ASH Review from the Follicular Lymphoma Foundaton

The ASH meeting ended yesterday, so no more previews. Now we're into reviews. Over the next few weeks, there will be lots of Lymphoma experts writing articles and making videos that talk about what they found most exciting at ASH. They're helpful. They often provide more detail and analysis than I could get from the abstracts, and it's usually easy to see patterns when they all talk about the same thing.

For this first review, we'll look at a video sponsored by the Follicular Lymphoma Foundation. It features Dr. Jessica Okosun, a Lymphoma specialist and professor at Bart's Cancer Institute in London. (Prof. Okosun was one of the panelists for the FLF's webinar, "Charting Our Progress Toward a Cure" last summer.) 

You can watch Dr, Okosun's video here on YouTube, or go to the FLF's website and see it there with some additional commentary. 

The thing that excited Dr. Okosun the most was the research on Epcoritamab and R-Squared (Rituxan + Revlimid or Lenilidomide). If there was a standout for FL reseach at ASH this year, it was this one. Since it was presented a few days ago, I've seen about 20-30 articles about it, with phrases like "game changer" and "new standard." (I'm always a little skeptical about new treatments being talked about so excitedly. I'll get more into that at some point.) The results were also published in the prestigious medical journal The Lancet a couple of days ago, which is a bigger deal, since it means the data has been peer-reviewed by other experts. 

As Dr. Okosun says in the video, the research was a randomized trial with about 400 patients, half of them getting R-squared and the other half getting R-squared + Epcoritamab. The R-Squared group had a Progression Free Survival of about 11 months, with the Epcoritamab group had not reached its median after almost 15 months (meaning fewer than half of the patients had their Lymphoma return). 

She was excited about bispecifics in general -- there was additional research at ASH on Mosunetuzumab as well -- but she also pointed out some safety concerns. Bispecifics tend to increase the risk of infection in some patients, so as with any treatment, there needs to be some caution when giving it. 

Dr. Okosun was also excited about the research on the biology of FL that was presented at ASH. We still have some basic questions that we don't have answers to, like why FL comes back after it seems to have been treated successfully. She was excited especially about research by Dr. Karen Tarte, who presented data that looked at differences between FL cells at diagnosis and then at relapse. You can see that abstract here; I'll try to look at it and comment on it soon. 

As I said, there will be more commentary from Lymphoma experts in the next few weeks about what they found exciting at ASH. And I'm sure a lot of it will be about Epcoritamab. I have no doubt that it has the potential to make things better for Relapsed and Refractory FL patients. It will be a matter of getting it to them. 

More ASH reviews to come.  

 

ASH Preview: The Leonard List

This post is the next one in a series of previews for the ASH meeting, one of the largest gatherings of blood cancer specialists in the U.S. The abstracts (or summaries) of the presentations come out a few weeks before the meeting, so while they don't give all of the details of the research, they do give enough for me to see if it is interesting or significant enough to focus on and write about.

For this post, I'm going to do something I have done in the past -- look at The Leonard List. Every year, Dr. John P. Leonard, a Lymphoma specialist in New York, gives a list of what he thinks are the Top 10 abstracts related to Lymphoma at the year's ASH meeting. It's always interesting to see which of his Top 10 are focused on Follicular Lymphoma, and  which of them were on my list as well.

(And, to be clear, Dr. Leonard is one of top Lymphoma specialists in the world. I'm not saying my list is as accurate as his, in terms of significance of the abstracts. If it's important to you to know which research at ASH really matters, go with Dr. Leonard, not with me. I'm just a guy with a blog.)

These will be shorter discussions from me than the previous ASH posts, since we have several to talk about.

Number 10 on The Leonard List is abstract #52:  EZH2 and CREBBP mutation status identify a subset of patients who benefit from bendamustine- over CHOP/CVP-based immunochemotherapies in follicular lymphoma: Findings from the GALLIUM trial and validation in a large international cohort. This one was actually on my list of abstracts to review. It looks at data from the GALLIUM trial, which involved 1202 patients with Follicular Lymphoma who had not been treated yet. Half received Rituxan + chemotherapy (either Bendamustine, CHOP, or CVP) and the other half received Obinutuzumab + chemo (the same three possiblities). A few years ago, data from this trial showed that Bendamustine led to longer Progression-Free Survival than CHOP or CVP, but also showed that Bendamustine led to more high grade infections than the other two chemos. This led to the idea that Bendamustine might make CAR-T less effective if the CAR-T comes later, since the Bendamustine affects the T cells that CAR-T relies on. For this presentation, the researchers look at gene mutations in the data they collected to try to identify which patients might benefit from taking Bendamustine, and which might be better served with a different treatment. They found that mutations in EZH2 and CREBBP could help predict success with Bendamustine. Patients with CREBBP and wild-type EZH2 benefit most from Bendamustine, with much longer PFS and Overall Survival than other patients in the trial. The others had similar PFS no matter which chemo was given. Still some more research needed to confirm this, but it's they type of biomarker research that's been so difficult to find lately.

Number 8 on the Leonard List is abstract #5515 CD19 expression is preserved following CD19-directed monoclonal antibody therapy with tafasitamab. This is a fairly small study that focuses on one of the problems that comes with CAR-T. If you've been reading the blog for a while, you know that many FL treatments rely on targeting proteins on the surface of the cancer cell. Rituxan, for example, targets the CD20 protein, which is very common on B Lymphocytes (the white blood cell that turns cancerous in FL). Another common protein is CD19, and that's the one that CAR-T goes after. The problem is, for about 30% of CAR-T patients who relapse after CAR-T treatment, their B Lymphocytes no longer have the CD19 protein, which means a whole bunch of FL treatments won't work on them anymore (though there are plenty that will work since they don't work by targeting that protein). The research in this presentation looked at Tafasitamab, an anti-CD19 monoclonal antibody. The research looked at patients who had one of several B Cell cancers, including FL. They wanted to know if taking Tafasitamab had the same effect as CAR-T, resulting in losing the CD19 protein. They found that most patients did not lose the protein. The conclusion has to do with sequencing of treatments -- patients who are CD19-positive should receive a treatment like Tafasitamab first, and then CAR-T if necessary. It's a small study and a small piece of the puzzle, but for those of us with a cancer that often returns, that kind of planning is important. 

Number 4 on The Leonard List is abstract #5385  Evaluating the clinical outcomes of GLP-1 receptor agonists in untreated indolent non-Hodgkin's lymphomas undergoing active surveillance. I'll be honest -- I talked to my wife about this one and I wasn't sure I wanted to even write about it, for reasons you will see. But I'm going to follow The Leonard List here and add my commentary about it. This presentation looked at the possible effects of GLP-1 agonists (that is, medications like Ozempic, Wegovy, and Mounjaro) on watching and waiting. These are given to help control diabetes and, increasingly, for weight loss. The research looked at patients with indolent, slow-growing Lymphomas (including FL) who had been taking a GLP-1 before or after their cancer diagnosis, and who were able to watch and wait. In looking only at the whole group, they found that patients who had received GLP-1, about 17.3% required treatment during the study, versus 20.3% who had not taken a GLP-1. The patients in the GLP-1 group had a lower risk of acute cardiac events including myocardial or heart attack (4.9% vs 7.3%) and a lower risk of heart failure (10.6% vs 15.2% ). Looking only at FL patients, the results were similar, but also included analysis that showed that there was "a reduction in those who progressed to DLBCL" (which I assume means transformation) -- 4.5% vs 8.3%. The abstract does not say why the GLP-1s might contribute to these results, though in the introduction, they hint that it might be more about weight loss and controlling diabetes than about the medication acting on the cancer cells directly. Both contribute to inflammation and heart issues, so reducing them will reduce other problems.

So why am I reluctant to write about it? Well, I'm always extra careful when I write about something that that's kind of "in the news" and is also controversial, and I think both of things are true about GLP-1s. The one thing I absolutely do not want anyone to think is that taking a GLP-1 will somehow cure their FL. There's no evidence in this study that such a thing would happen. This study looks at a very particular population -- FL patients who are watching and waiting -- and makes conclusions about particular things -- increasing time to treatment, reducing heart issues, and possibly reducing transformation. Should you be taking a GLP-1? I have no idea. Talk to your oncologist about how much they know about whether or not it will have an influence on your cancer, and talk to your other doctors about whether it will have an effect on any other health issues you are experiencing. Your doctors are the best people to help you make those decisions. As I wrote above, I'm just a guy with a blog.

(I'm guessing this is going to be one of those ASH presentations that people talk about after all of the details are presented at the meeting. I'll share if I see anything with good analysis.) 

Finally, Number 2 on The Leonard List is abstract #117 "Lymphovision: A lymphoma-specialized foundation model for histology-based lymphoma classification and subtyping." I already wrote about this one. I guessed number 2 correctly! 

So that's The Leonard List for this year. In the past, Dr. Leonard has gone into a little bit further detail about his picks during a special podcast episode. However, that podcast was sponsored by his old institution, and he's switched jobs since last year. I haven't seen any notice on his Twitter/X feed that he's got a podcast episode coming up, but I'll keep looking. I'll post a link if there is one,

The ASH meeting starts very soon -- it runs from December 6 to 9. That means we'll start to see press releases, articles, and videos with more detail about some of the presentations. That means I might be moving soon from "ASH Preview" to "ASH Review," but I'll probably still be sharing some ASH content either way for a few more weeks. So stay tuned.

 

ASH Preview: Zevalin

As I said I my last post, when I do previews like this for the ASH meeting, I'm not trying to be comprehensive. If something seems important, I'll look at it. (You'll see a few of those coming up.) But if something seems interesting t me personally, I'll look at that, too.

This is one of those "interesting to me personally" previews. It's for session #1825 "Real-world outcomes of Y90-ibritumomab tiuxetan (Zevalin) in low-grade B-cell non-Hodgkin lymphoma: A single-institution experience."

Zevalin is a type of RadioImmunoTherapy, or RIT. You don't see much about RIT anymore, at least not in the U.S., and there's a reason for that. RIT treatments were created to solve a problem with blood cancers in using radiation. Radiation can be an effective treatment, particularly for cancers with solid tumors. A beam of radiation can be aimed directly at a tumor. But that's not the case with blood cancers -- the cells are always moving around in the bloodstream, so it is literally a moving target. RIT works by taking a monoclonal antibody (something like Rituxan), which targets a protein on a cancer cell (CD20 is the target for both Rituxan and Zevalin). It also includes a small bit of radiation. So when the RIT finds a CD20 target, it attaches itself to the cancer cell, putting the little bit of radiation onto the cancer cell and killing it. And even better, at least in theory, because the radiation is aimed at a very specific target, there is less chance of it affecting healthy cells, so there should be fewer severe side effects. 

Zevalin was approved by the FDA for Relapsed and Refractory Follicular Lymphoma in 2002, and another RIT called Bexxar was approved right around the same time. I was diagnosed in 2008, so there were lots of follow-up studies being conducted and reported on in those first few years after I was diagnosed. And it was all very exciting to me. I remember the first article from a medical journal that I really got excited about was a report of R-CHOP and Zevalin, where Zevalin was used a salvage therapy (that is, it was given after R-CHOP to kind of clean up any leftover cancer cells). The idea of using three different treatment types -- a monoclonal antibody, traditional chemotherapy, and an RIT -- that work on the cancer cells in different ways, just made so much sense to me. 

So Zevalin has been on my mind for almost as long as I have been an FL patient. And those early studies showed that it was very effective. I remember communicating with two or three folks who had been in trials for Zevalin, and who had been in remission for years.

So why do we hear so little about it now?

Well, at least in the U.S., it's for a couple of reasons, but the biggest was a ruling by the FDA about how Zevalin had to be administered. Because it involves some radiation, the FDA ruled that it could only be administered by a Radiation Oncologist, someone with about 400 hours of specialized training. So while Rituxan or CHOP can be administered right in the treatment room at an oncologist's office, they would need to send you to a specialist if they thought RIT was the best option. And even in 2008, there were already a number of other options for FL treatment, so there wasn't much reason to send a patient to another specialist, or to do 400 hours of specialized training themselves. 

Soon after that ruling, the maker of Bexxar pulled the treatment from the market.But Zevalin has stuck around.  I have no idea how often it is used these days, but as far as I know, it's still available. Interestingly, a few years ago, there was another attempt at getting an RIT approved. It was called Betalutin, and it was pulled after a phase 2 trial. I kind of predicted that was going to happen when I first started reading about it.  

So what is this particular ASH presentation about?

Well, it looks at "real world" outcomes for people who received Zevalin -- patients who were not in a clinical trial. Some of those folks were followed for 22 years, from the time Zevalin was approved by the FDA.

A total of 122 patients with B Cell Non-Hodgkin's Lymphoma (most of them had FL) from one cancer center were followed. 72 of them had received one previous treatment, 43 used it as a salvage therapy after chemo, and 6 used it as a first treatment. The median age was 64 years old. 

The Overall Response Rate was just under 78%, which is pretty great for an FL treatment -- 70.8% ORR for the R/R patients, 88.4% for the salvage patients, and 100% for the first treatment patients.

The media Overall Survival was just under 10 years for the whole group. (Remember, Overall Survival measures dying from any cause, not just something Lymphoma-related, and "median" means that half of the group lived less than the median number, but half lived more than the number.) The median OS was 6.5 years for the R/R group, 15.2 years for the salvage group, and 8.4 years for the first line group. The median time to next treatment was 7.4 years, and 18 patients developed a secondary cancer.  

In their conclusion, the researchers say that Zevalin still has a place in the treatment options for certain patients. That's probably true, especially considering it is about the same cost (maybe even a little cheaper) than something like Rituxan. But I also think it's very unlikely that it's going to suddenly get popular, given all of the other treatment options we have now.

It's always interesting to look back and think about what might have been. I certainly don't have any regrets about being treated with Rituxan instead of something else. But I also can't help but wonder what the path for other FL patients would have been if Zevalin had become more popular. It's not a perfect treatment, by any means, but it might have helped a lot more people than it was able to.

More ASH previews soon.

 

 

 

 

 

ASH Preview: LymphoVision

I'm finally getting around to looking at ASH abstracts.

For those of you who are new around here, ASH stands for the American Society for Hematology, the organization for doctors who specialize in blood disorders, including blood cancers. Every year in early December, they hold their annual meeting, and it's where some of the biggest news about Follicular Lymphoma gets shared. About a month or so before they meeting, they publish the abstracts -- the summaries of the research that will be presented at the meeting. If you're interested in reading on your own, you can find the abstracts here. You can enter a search term like "Follicular Lymphoma" or the name of a particular treatment, and you'll get the list of every abstract that deals with that thing.

Every year, I like to do a little ASH preview, and talk about some of the abstracts that I'm interested in. To be clear -- these aren't necessarily the most important abstracts (though I do try to guess what those will be, which is usually easy because of all the talk online about them). Usually it's just something that I find interesting. Like, this year, there's some research being presented about the long term success of Zevalin, an ImmunoRadioTherapy that I first wrote about in 2009. If you search for "Zevalin" in the blog, you'll see that I wrote about a whole bunch. But it never really gained acceptance as a treatment, for a specific reason. I'll write more about all of that soon when I do a preview of that ASH presentation. 

My point is, I usually write about things that interest me, not necessarily the things that experts find important. Some medical conferences end up featuring some groundbreaking research that really changes things for us as patients. But most of the time, it's the kind of small, incremental moves forward that are typical of cancer research. Science tends to move in inches (or centimeters) over many years, rather than in miles (or kilometers) all at once. 

At a meeting like ASH, that means lots of new research about treatments that are already in use, and maybe a few reports from phase 1 or phase 2 clinical trials that are very hopeful but still a long way from showing up in the treatment room. I read an article a couple of days ago where someone gave an ASH preview, looking at research for a whole bunch of blood cancers, not just FL. He says there is lots of research about "rival BTK degraders," as well as bispecifics and CAR-T treatments. Not necessarily big news about something new. But lots of Presentations showing that one company's version of a treatment might be a little better than someone else's. That's not a bad thing. Keep moving forward, inch by inch, centimeter by centimeter.

So all of that brings us to the first abstract that I want to talk about: "#117: Lymphovision: A lymphoma-specialized foundation model for histology-based lymphoma classification and subtyping."

I'll be honest -- I went through all of the abstracts and marked a bunch to look at more closely later on, and the only reason I marked this one was because the name "LymphoVision" made me laugh. It's definitely something that a hero from the Marvel Universe would have as a super power. Lympho Bob loves Lympho Anything. 

But it's actually a very cool presentation.

The research looks at Image Foundation Models, a type of huge AI-powered database. For cancer research, Image Foundation Models can be trained to look at tissue samples and determine if one is cancerous. They aren't used much with Lymphoma cells yet, but in research on other cancers, Foundation Models have actually been able to look at a sample that seems normal but that they accurately predict will mutate and become cancerous in the future. The researchers for this abstract have developed a Foundation Model that looks specifically as Lymphoma samples -- and they call it LymphoVision.

(They actually call it Lymphovision, without the upper case V, but I think it looks cooler that way.)  

For their research, they used 37 million tissue samples to train the program to recognize Lymphoma. They asked the program to perform several specific tasks, including finding FL in the sample and then classifying it as either grade 1-2 or grade 3. For that particular task, the program found 660 cases of FL -- 500 cases of grade 1-2 and 166 cases of grade 3, for an accuracy of 89.2%. When asked to identify a range of different types of Lymphoma, it had "high diagnostic accuracy" (you can see the results in the abstract). If you're wondering how all of that compares to humans, the abstract says "Based on historical
benchmarks from the 1997 International Lymphoma Study Group classification project, expert
hematopathologists achieved diagnostic agreement rates of 55% to 84%" using the same methods. 

The researchers know that more work on this is necessary, but they see a lot of promise in using tools like this for diagnosis in the future.

I don't know how much you all deal with Artificial Intelligence, but I think there is a general ambivalence about it -- one that I share. Research like this is wonderful, and shows how an AI program can save time and cut down on human error. But the technology is still in its very early stages and make lots of mistakes. That 89.2% accuracy still leaves 1 out of 10 patients getting an incorrect diagnosis. So it's not perfect. 

But I do agree that it holds some promise, and it will likely get better over time. (I'm in that weird space where I want some AI to improve quickly to make my health better, but other AI to improve slowly so I can hang on to my job for a few more years until I'm ready to retire.)

More ASH previews to come soon. 

 

 

Two Approvals and a Story

My email notifications have been very busy over the last few days, with news of treatment approvals in the US and in Europe. If I get that many notices, it must be a big deal. I'll tell you about them, but first, a story.

A couple of days ago, I went for my first CT scan in many years. It wasn't for cancer, but for a heart-related issue. (Everything is fine -- just needed to check on something to make sure it really is fine.)  I haven't had a cancer-related scan in a while because I haven't needed one, and my oncologist is pretty firm in his belief that if there isn't a reason to do a scan, we shouldn't do one. "Surveillance" scans, just looking to see if there are any problems, don't usually work that way. Something else happens that calls for a scan, and the scan confirms the problem. 

So that's what happened with my heart-related issue -- something else showed a problem that CT scan could confirm. It was different than any of my cancer-related scans. It was just a CT scan, not a PET scan, so there was no nasty liquid to drink, no IV with a contrast in my arm, no getting undressed. Just me on a table, gliding into a big donut. It took about 5 minutes. 

I've been so busy lately that I really hadn't had time to even think about getting this scan. So it wasn't until I was on the moving table that I even thought "Wow -- it's been a long time since I had a scan. I really don't like scans. There is way too big a chance that a scan is going to bring bad news." That little bit of scanxiety didn't kick in until I was in the middle of it.

And then the voice came on, the one that gives you instructions. So a male voice started speaking to me: "Take a deep breath....now let it all the way out.....take another breath.....now let it all the way out......Now breath in deeply and hold," but his voice went way up when he said "hold," like he was asking a question. Then he continued, "Now you may release your breath." This happened three times.

I almost messed up the scan because I started laughing a little.

The whole "hold" like it was a question was kind of funny. But then I started thinking about the last scan I had, several years ago, at my cancer center. The voice that spoke to me there had a British accent. So instead of saying "Now you may release your breath, " the British voice said "Carry on breathing."

"Carry on breathing" is not a phrase that we use in the US. I remember telling my kids about it, years ago, and them thinking it was very funny. 

So there I was in the CT machine, already smiling at the guy say "hold" like it was question, and now I'm also thinking about the British guy saying "Carry on breathing," and I know I'm about to laugh out loud and ruin this whole scan. 

Thankfully, I was able to hold in my laughter until I was done (thank goodness it was a short scan). But I did tell the technician about it, since she was looking at me funny when I was chuckling a little bit when she came back into the room. She thought it was amusing.

So it's nice to be in a place where I can laugh during a CT scan. I hope that's someplace we can all be someday, with no worries about anything. 

***************

Now, on to those approvals.

The first is from the US. The FDA approved Epcoritamab for two different situations involving Follicular Lymphoma.  

Epcoritamab is a bispecific, attaching itself to B cells with the CD20 protein, ans then to a T cell (an immune cell) with the CD3 protein. In this way, it brings the immune cell close to cancer cell, so the immune cell can take out the cancer cell. Epcoritamab was accelerated approved by the FDA for relapsed/refractory FL in 2024. Accelerated approval is kind of temporary, allowing the treatment to be used on patients while additional data is collected. So the first of the two new approvals is making the accelrated approval into a permanent approval. Epcoritamab can be given as a single agent for patients with Relapsed/Refractory FL who have had at least two treatments already.

The second approval is for Epcoritamab to be used with R-Squared -- Rituxan and Revlimid/Lenalidomode. R-Squared is being used more and more as a substitute for traditional chemotherapy, so just as there are combinations of chemo with new agents, there are also combinations with R-Squared. The potential problem with that kind of combination is that with three treatments, you have the potential for triple the side effects. In fact, safety was a concern when research on Epcoritamab was presented at the ASCO conference in 2024. But apparently there was enough data to lessen those concerns.

So we have a couple of more treatment possibilities in the US. (It has already been approved in Europe and Japan.)

The second approval is for Tafasitamab in Europe. This isn't a full approval just yet, but it's very close. This approval is the last step before it becomes official. It was recommended by the European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP), which approved it for use with (again) R-Squared for Relapsed/Refractory FL who have had at least one other treatment. It needs to get its final approval from the European Commission.

Tafasitamab (also known as Monjuvi) is a monoclonal antibody, like Rituxan. But unlike Rituxan, which binds to the CD20 protein, Tafasitamab binds to the CD19 protein. So in theory, it should work well with R-Squared, since it works in a slightly different way. The same potential problems with safety can happen with this combination, but the clinical trial data seems to show that it was OK. Given how many notices I received about this, it seems like there won't be any major issues with it getting approval from the European Commission. 

I know that there is going to be some new data for Epcoritamab at ASH in a couple of weeks. I haven't looked to see if there will be anything new for Tafasitamab. I know I need to get moving on ASH previews. I hope to have some for you soon.

Dealing With Fear of Cancer Recurrence

The journal JAMA Network Open just published a study called "E-Health Intervention for Fear of Cancer Recurrence: A Randomized Clinical Trial." To me, the details matter less than the lesson that we should be reminded of.

The study looks at survivors of Colorectal Cancer, not a blood cancer. In this trial, 95 survivors were divided into two groups to measure their fear of their cancer returning (certainly something that we can all relate to, no matter which of our body parts was affected by cancer). All were given something called the Fear of Recurrence Inventory (Short Form). You can see the Inventory here -- it asks questions about how anxious one is about their cancer returning, using a scale of 0-4. With 9 questions of the form, the lowest possible score is a 0 (no fear at all), and the highest is 36. 

One group was given a specific intervention, the one that was being tested. It involved 6 modules that included written responses from a trained therapist, "delivered remotely, individually, and asynchronously over 10 weeks." In other words, the survivor didn't meet with a therapist, but was given personal written responses online to their fears and concerns. The other group was the control group. After taking the Inventory, they were given a diagnostic interview and then referred to a website with self-help exercises (no therapist gave them personal advice).

The trial found that the first group, who got the help from a therapist, had a much more successful time lowering their fear of recurrence. Between the two groups, there was a difference of about 19 points at the end of the trial (on that scale of 0 to 36). The score from the Inventory that signals a need for intervention is only a 3. By the end of the study, 81% of the first group has scores below 3, while only 43% of the second group did.

It seems like the trial showed that the specific intervention was very helpful for that group of Colorectal Cancer survivors.

But stepping back a little bit, I think it's a great reminder for all of us.

Sometimes we can deal with our own cancer-related mental health problems. And sometimes we need some help. 

In some ways, it's hard to compare Follicular Lymphoma patients/survivors with those who have had Colorectal Cancer -- or most cancers, really. Folks with other cancers have that whole "5 year" thing, where they can be told that they are likely cured after that time. That's harder for us. We have it drilled into our heads that our cancer is "incurable." I'm not sure what that means, and it's awfully hard to measure it with a cancer that is slow-growing and that typically gets diagnosed when folks are on the older side. But I think it's true for most of us that we understand that we'll likely live with this cancer for the rest of our lives, whether it comes back or not. (And remember I'm saying this as someone who was diagnosed almost 18 years ago and hasn't needed treatment in almost 16 years.)

There's a different type of mental burden for us, but it's a burden none the less. I know for me, personally, it has gotten easier over time to not think about it coming back. But it's always there, quietly lingering, and some days, it comes back loudly. But I've learned to live with it. 

My point is, there might be times when we can deal with the fear on our own. And there might be times when we need some help.

And it's OK to need some help. 

Even if it doesn't involve us directly, this study shows that there is lots of help available, and it can come in many forms. It might be, like in this study, getting written responses online from a professional. It might mean seeing a professional face-to-face. It might mean being part of a support group at our cancer center. It could mean being part of a support group online.  It could be something as simple as having coffee with a friend or loved one and talking.

I'm a big believer in talking about what we fear, and I think sometimes we need the reminder that it's OK to seek help when we need it. 

Where I live, the leaves are changing, the days are getting colder, and the songs about Santa Claus are starting to show up in stores. It's a joyous time for a lot of people. 

But it;s a stressful time for lots of people, too. A good time to start paying attention to how you're feeling and what you might need to do about it.

So this is just a reminder. If you need help, it's OK to ask for some.  

I hope everyone is doing well.  

50 Years of Lymphoma Lessons

I like to think I've learned a lot in my almost 18 years as a Lymphoma patient. Of course, I'm not an expert -- not like the actual doctors and researchers who have made Lymphoma their life's work. But I've read and written enough to know that there have been some major changes to the Lymphoma world since 2008.

But someone who has seen all of that and so much more is Dr. Bruce Cheson.

If you're a long-time reader of the blog, you might recognize his name. He is a now sort-of retired Lymphoma expert. I linked to him a lot because he wasn't just a well-known and influential researcher (he was responsible for introducing Bendamustine to the U.S.), but because he was very good at explaining things in a clear and often entertaining way. (I have a memory of him making a presentation at a conference somewhere with a glass of wine on the podium as he speaks.)

Dr. Cheson retired a few years ago, though he's still very active in many ways in the Lymphoma community.

A couple of weeks ago, he published something in the ASCO Post, the blog for the American Society for Clinical Oncology. The piece is called "My 50 Years in Lymphoma: Lessons Learned?" 

From the title, I expected a celebration of all of the progress we have made in 50 years in treating Lymphomas. But it's not quite that -- it's more of a list of the things that the research and treatment community still needs to make better.

He looks at different elements of the Lymphoma diagnosis and treatment spectrum -- classifying it, staging it, grading it, treating it, and deciding how successful the treatment was. For each, he gives a brief history (something a Cancer Nerd like me finds very interesting).

But he also points out how stuck we are in the past in many ways.

Take FLIPI for an example, which he discusses under "Prognotic Scoring Systems. I sometimes get emails or comments from readers asking me what FLIPI is, so I've seen how confusing it can be. FLIPI is the Follicular Lymphoma International Prognostic Index. Originally, FLIPI was used to categorize patients in clinical trials. The idea was that using a kind of "quiz" could help make sure everyone in the trial was basically the same, as far as their disease goes, so the can be more easily compared to one another. It doesn't make sense to see if a treatment worked on an asymptomatic stage 1/grade 1 patient who is 40 years old and then compare it to a 70 year old with stage 4/grade 3 bulky disease. So the FLIPI used categories like age, stage, and LDH levels to give a score from 1 to 5. A score of 0 is "low risk" and a score of 5 is "high risk."

One of the problems with FLIPI is that it is sometimes used by patients to guess their future. The link above will take you to a quiz that gives you a FLIPI score and prognosis. A score of 0 means you have a 70% survival rate for 10 years -- at least according to the quiz. A score of 5 means your 10 year survival is about 35%.

But the FLIPI is so general that it really tells you nothing about YOU as an individual. There are so many more factors that determine your situation than something like age. FLIPI is not a crystal ball. It cannot predict YOUR future. 

Back to Dr. Cheson. As he pints out, different versions of FLIPI have been prposed over the years, like FLIPI2 and FLIPI-m7, which looked at other biomarkers, but which really never caught on. (It was tried out on larger groups of patients and found that it didn't really hold up. Biomarkers have always been an issue for FL.) For Dr. Cheson, the problem is kind of the opposite of the one that I point out (which is that FLIPI probably makes your future look worse than it is). For him, the problem is that FLIPI doesn't accurately identify high-risk populations. It's that biomarker problem again. Being over 60 doesn't make you higher risk. It makes you average. 

He thinks most prognostic systems like FLIPI are decades old and do not reflect what we have learned about Lymphoma biology (despite the attempt at FLIPI-m7). They are useless in helping a clinical oncologist figure out the best way to treat a patient. And certain factors have changed with more effective treatments. Have three sites with swollen nodes instead of four sites doesn't change the recommended treatment. It's really not helpful -- not for patients who are worried about their futures, and not for the doctors who are trying to help them. 

Dr. Cheson points out lots of other things that are similar -- old habits that don't really apply any more. 

The question is, what to do about it? 

For Dr. Cheson, the answer is "a revolution": "To improve patient outcomes, a revolution is clearly needed for integrating staging, prognosis, treatment, and response assessment in the context of the remarkable proliferation of exciting new, nonchemo therapeutic agents for lymphoma." 

I hope the solution isn't quite as drastic as a revolution would suggest. But I can also see where someone like him, with a 50 year perspective, would think so. There is so much exciting news in the world of treatment that the basics of diagnosis and staging still haven't caught up with it. 

Here's hoping that revolutionary spirit spreads through the whole Lymphoma community.