Photographs and Memories

I have an old phone. It doesn't have a huge amount of storage on it, so it fills up fast, to the point where I can't do any updates because there isn't any space.

I know the reason. I run my dog's Instagram page (oh yes -- that guy named Lympho Bob is not my only online persona).  I take several pictures of the dog every day. "For online content," I say to my wife and kids who roll their eyes at me when I tell them to keep still so the dog will stay in whatever cute position she is in. I end up with way more photos and videos on my phone than I actually need. And then I forget to go back and erase them and they pile up.

So over the last few weeks, I've been going through the photos on my phone, erasing anything that I don't really need, like duplicate photos of the dog or old memes that I though were funny and may r may not think the same now. Last week, my wife and youngest kid and I took a train ride into New York City to go to the Metropolitan Museum of Art. It's an amazing place. I spent the 2 hour train ride going through all of my photos for 2023. I had a ridiculous number of photos of my dog sleeping while she's lying on her back. Maybe two of them ended up on Instagram. It was very therapeutic to erase so many of them and create some space.

As you might imagine, going through thousands of photos brings back some memories. And some of those memories are directly related to being a cancer patient.

I found several photos that I had saved over several months, all variations of the same meme: "My Lymph Nodes are Assholes." I liked that one a lot, enough to save it whenever it came up. I don't think I ever re-posted it anywhere, including in this blog. But I enjoyed the fact that it kept coming back to me, and I kept enjoying it. And it's true -- if my Lymph Nodes were people, I probably wouldn't want to spend much time with them. They're much too negative. I'm getting to an age where I'm more selective about who I spend time with. I'd rather not have what they are offering.

I found another meme, a list written by a cervical cancer patient: "You Know You Have Cancer If...." and then there were 10 items like "You can pronounce difficult drug names correctly" and "You speak very freely about your own body." They were all very true. But my favorite was "You have a favorite vein." Because I do have a favorite vein -- left arm, along the inside of the elbow. It's a beautiful one -- I have been told so by many phlebotomists. In fact, when I get blood taken and the phlebotomist doesn't comment on how nice it is, I get a little insulted. "Pretty privilege," I think it's called. Those of us with beautiful veins can get a little bit obnoxious about it. 

I found a bunch of vacation photos of people I have met who are cancer survivors. My wife and I are doing our best to travel now, when we can, when we are healthy enough to enjoy it. We don't want to look back 10 years from now, wishing we had taken the trips we used to dream about. We're living the dreams now, as much as we can.

There were some photos of a group we had met on a river cruise, and one of the women in the group was a two-time breast cancer survivor. One night, when the wine was flowing at dinner, we started talking about how ridiculous it was to be diagnosed with cancer at a relatively young age -- me at 40, she in her late 30s. We were laughing in a way that cancer patients do sometime. But it wasn't a happy conversation for her husband. He said to me, stone-faced, "But it wasn't funny when it happened, was it?" No, it wasn't. I told him about watching moving with my young kids and turning out the lights in the room so they wouldn't see me crying. 

It's funny how shared sadness can make someone feel happier. 

A few years before that, we traveled to Italy, something we'd talked about for 30 years. While we were there, we met someone who was in active treatment for lung cancer. She and her husband were great travel companions, and we spent a wonderful afternoon with them in Venice -- one of our favorite travel memories in many years of traveling. Of course, it came out that both of us were in different stages of our dealing with cancer. She was a cancer blogger and writing teacher, like me. We had lots to talk about.

I kept up with her blog for a long time. As I said, she was in active treatment when we met. She is a long-distance bike rider, and enjoyed good days when she could get out and ride. She hasn't written anything on her blog since April. It was good news at that point -- she was able to see her oncologist three times a year instead of four. So I'm going to assume she's doing well and spending her time riding instead of writing. Writing about cancer is hard to keep up sometimes, I know. We all need a break. 

We had corresponded by email for a while, and that made me think of all of the emails I have received over the years from readers. I think about you all a lot. It's true. I'll read or something that will make one of you pop into my head. The filmmaker from the Netherlands. The doctor who retired and moved to Portugal. The marathoner from Ireland. The second amendment advocate who was finding out information for her brother. The guy who just wanted to stop thinking about cancer and get back to riding his motorcycle with his wife. I am honored that you reached out to me and trusted me with your stories. I save all of those emails, and every now and then I think about writing to you to ask how you are doing. But I don't, because maybe you're in a place where you don't want to think about all of this anymore. And I respect that. 

But I'd also love to hear from you if you're still reading. I'd love to now that you're doing OK. 

Cancer is such a long, strange trip if we're lucky. I hope all of you are able to make happy memories and have some time to reflect on them. And maybe smile a little.

 

Epcoritamab + B-R

The journal HemaSphere published new research last week on another Epcoritamab combo. It's an early trial, but it could be an effective treatment for some patients.

Epcoritamab has been getting a lot of attention lately. If you've been a regular reader, you know I've been saying for a few years that that the treatments that seem to get oncologists most excited these days are CAR-T and Bispecifics. And he bispecific that gets them most excited is Epcoritamab.

A quick reminder: a bispecific works by targeting two different proteins. One of them is on the surface of the cancer cell. So it works a lot like Rituximab, which also targets a protein on the cancer cell. But a bispecific also targets a different protein on a different cell -- a T cell, which is an immune cell. So bringing a cancer cell close to an immune cell, the bispecific helps the immune system work against the cancer. 

Epcoritamab works by targeting the CD20 protein on the cancer cell (just like Rituxan does) but also the CD3 protein on the T cell. It works very well, and there are more and more reports of it being used successfully in various combinations (like the recent presentation on Epcoritamab + R-Squared).   

In this research, the combination is Epcoritamab + Bendamustine + Rituxan. As many of you now, Bendamustine is a traditional chemotherapy. The article from HemaSphere is called "First-line treatment with epcoritamab in combination with bendamustine plus rituximab induces sustained remissions beyond 3 years in patients with follicular lymphoma." 

It's a pretty straightforward title. The article describes a phase 1b/2 clinical trial (meaning it looks at safety, like a phase 1 trial, but also effectiveness, like a phase 2 trial). The study involves 25 patients from the trial who have been diagnosed with Follicular Lymphoma but had not yet received any treatment. The patients received Epcoritamab + BR and thenwere given additional Epcoritamab for up to 2 years. 

At a median follow-up of 41.3 months, the Overall Response Rate and the Complete Response Rate were both 96%. In other words, 24 of 25 patients had a Complete Response. That's very high, and I can't remember any trial where the OR was the same as the CR. And at a median of 36 months, 87% of patients had kept that Complete Response. The 3 year Progression Free Survival was 83%, and the 3 year Overall Survival was 96%.

As for safety, the combination did not produce any new side effects, just the ones that were expected with either Epcoritamab or BR. However, those expected side effects were not minor. There was no high-grade Cytokine Release Syndrome (CRS) or ICANS (Immune Effector Cell Neurotoxicity Syndrome), which are perhaps the most serious possible side effects, though lower-grade CRS occurred in 68%. But there were other side effects. 92% of participants reported infections (a sign of a weakened immune system),   with COVID-19 being the most common (patients were enrolled in 2021). Injection site reactions in 56%. Fatigue in 52%. The most common grade 3side (more serious) side effects were infection (44%), and low white blood cell counts. In all, 72% of patients experienced a grade 3 or higher side effect of some kind.

The researchers point to the high CR rates and long duration as very positive things. But they also point out that a combination like this can potentially bring about serious side effects, and caution doctors to think very carefully about which patients would benefit from it instead of a different treatment with less serious side effects.

It's a small study, very early in the process, but probably justifies moving on to a larger study. It will be very interesting to see if the side effects become an issue. Epcoritamab is part of our future, no question. But how it ends up in our future -- as a single agent or in some combination -- will be worked out over the next few years.

 

Vitamin D and Cancer: No Easy Answers

The Journal of the American Medical Association published an article that this week that disappointed a lot of people. It's called "Addition of High-Dose Vitamin D₃ to Standard Treatment in Patients With Metastatic Colorectal Cancer: The SOLARIS Randomized Clinical Trial (Alliance A021703)." The hope was that taking high-dose vitamin D along with standard chemotherapy would improve outcomes in this specific group of colorectal cancer patients. Unfortunately, it did not improve Progression-Free Survival. 

The study looked at high-dose (8000 IU for two weeks, followed by 4000 IU daily) versus standard-dose (400 IU daily). There was a small PFS benefit for the high-dose group, but it wasn't statistically significant.

This isn't a study about Follicular Lymphoma, or any other kind of blood cancer, so it doesn't say anything directly about how vitamin D would affect those of us with FL. But studies of cancer and vitamin D always catch my eye because it's one of those interventions that people have asked me about fairly frequently over the years. There have been some tantalizing studies that get our hopes up. For example, in 2022, a study of Diffuse Large B Cell Lymphoma patients found that those with low Vitamin D levels had a lower response rate to CAR-T and a lower Overall Survival after 2 years than patients with normal vitamin D levels.  But that's not the same thing as saying vitamin D will improve outcomes if you already ave normal levels. Another study from 2019 found that Lymphoma patients who had higher sun exposure (and thus more opportunity for the body to naturally develop vitamin D) had a smaller risk of developing some kinds of Lymphoma, including FL. But they also found that getting vitamin D through food or supplements didn't have any effect. And then in 2018, there was a presentation at ASCO on a phase 3 clinical trial comparing FL patients who received Rituxan + vitamin D versus just Rituxan. I never saw results from the trial, which typically means it wasn't successful.

There are more. You can put "vitamin D" in the search box at the top of the blog to see more. But it's more of the same -- studies that show there might be some benefit maybe to some small population in some particular circumstance. I get these reminders every now and then that I need to step back and ask why I'm doing things and consider what I believe.

To be very clear -- I'm not saying you shouldn't take vitamin D. It has all kinds of health benefits. The National Institutes of Health have a nice comprehensive sheet that describes some of those benefits. 

But keep reading -- it also describes some of the problems that come from excessive vitamin D intake.

The point here is that it's worth knowing what your vitamin D levels are, and working with a doctor to figure out what that means for your own overall health. But I wouldn't expect it to cure your cancer. 

This is also a good time to remind you that I am not a medical doctor or a cancer biologist, and you shouldn't take medical advice from me. The best person to take medical advice from is your own doctor. They know you best, and they have the expertise to help you.

All of that said, I do take vitamin D every day. I tested low a few years ago, and my doctor recommended supplements. My vitamin D levels are normal now. I still take a fairly high dose every day, and that keeps me within normal range. In fact, it's at kind of the lower end of normal range, which suggests that my high dose is what I need. There's something happening in my body that keeps my levels low without the supplement. 

What is that thing that keeps my levels low? I have no idea, and I'm not going to worry about it. The very easy and fairly inexpensive intervention that my doctor recommended is doing its job. 

As I said, I like to have a reminder every now and then -- even a negative one -- that there are no easy answers, as much as we'd like there to be. The best we can do is stay informed, work with our doctors, and trust the excellent research that is being done.

 

Cancer Medicine Approvals in the US

The medical journal JAMA Oncology published a research letter a couple of days ago that I found really interesting. A "research letter" is a kind of informal discussion of research results, very different from the long articles that report of clinical trial results. But it provides some historical content for cancer research as a whole that should be very encouraging for all of us.

The article is called "Cancer Medicine Approvals in the US," and it looks at the circumstances surrounding the approvals of cancer treatments by the FDA for the last 20 years (from January 1, 2006 to December 31, 2025). The research focused on treatments for solid tumors, so there were no blood cancer treatments involved. There are also no pediatric treatments or generic drugs or biosimilars.

But even without the blood cancer treatments that would be most relevant to us, it still gives us a picture of the kinds of trends that have happened in the last 20 years. I think those same trends are probably true for those other treatments that aren't included in the data.

The researchers found that from 2006 to 2025, the FDA approved 385 different cancer treatments for solid tumors. Of those, 154 (40.0%) were for brand new treatments, and 231 (60.0%) were for new indications for approved treatments. For example, a treatment might have been approved for a first-line breast cancer treatment that was already approved for relapsed breast cancer. 

Another breakdown: of the 385 approvals, 105 (27.3%) were approved through the Accelerated Approval process. This means they were approved using data from a smaller phase 2 clinical trial, rather than a larger phase 3 trial. Accelerated Approvals are granted when a treatment meets a particular need that isn't being met by any other available treatment. That number is lower than I would have expected. It seems like there are lots of Accelerated Approvals these days for blood cancers, and they don't always work out well. So I feel a little better knowing that about three quarters of approvals are from the regular process. Accelerated Approvals often work out great, but they concern me sometimes. 

Another interesting bit of data: Traditional chemotherapy accounted for 40% of all approvals from 2006 to 2010. However, for the last 5 years, they have accounted for only 3.9% of approvals. This is not at all surprising. We can see it in blood cancers -- R-squared, CAR-T, bispecifics, monoclonal antibodies. All of them are proving to be good alternatives to traditional chemotherapy. They are more targeted, so they do less damage to non-cancer cells and have a different set of side effects. And even though the word "cure" was recently applied to R-CHOP, an immunochemotherapy combination, the excitement lately comes from those non-chemo options. 

Another interesting bit of information from the research is about endpoint markers. These are the data that ultimately proves whether a trial is a success or not. The best endpoint should be Overall Survival -- how many patients were still alive after 5 years or 10 years or whatever length of time they need to compare to. If a treatment keeps more people alive, that should be the measure of success, right?

It's more complicated than that. Only 102 of the 385 trials (26.5%) had Overall Survival as an endpoint. And that number is declining -- it went from 40% of trials from 2006 to 2010 to 18.7% from 2021 to 2025. Instead of Overall Survival, most trials used a "surrogate endpoint" -- a different statistic that shows "success." In blood cancers, especially in Follicular Lymphoma, the surrogate endpoint is often PFS -- Progression Free Survival, or the number of patients whose disease did not get worse over a period of time. This makes sense for FL -- if the Median Overall Survival is now 18-20 years for FL patients, it could take much too long for a treatment to be approved. No drug company is going to wait 20 years for the data they need to get approval. So while PFS isn't a perfect surrogate, it's good enough for FL.

For this research on solid tumor treatment approvals, PFS was the most common surrogate from 2006 to 2015 (60% of all trials). But from 2016 to 2025, the most common was Response Rate (46.7%). This strikes me as more problematic. A response to a treatment is great. But some responses last only for months. At least PFS typically goes on for a couple of years. Of course, I understand that not all PFS measures are long, and not all Response measures are short, and some for some cancers with few treatments available, any response is a big success. It's all more complex than these numbers suggest. But in my observation, it seems like PFS, and not Response Rate, is the primary endpoint for most new treatments, which is good.

One final bit of data comes from the way trials are constructed. Many consider the "gold standard" for clinical trials to be a randomized, two-arm controlled trial. This type of trial involves randomly splitting patients into two groups. One group gets the "standard of care" -- the treatment that is accepted as the best available at the time. This is the "control" group. The other group gets whatever new treatment is being tested. In this way, the researchers can guarantee that the two groups are the same and that a fair comparison is being made between the old and the new. The alternative is a "single arm" study. There is no direct comparison because there is only one group. The data from the trial is compared to another trial that took place in the past. There is no guarantee that the old and the new are the same. It's much easier to run a single-arm study like this, and they are more common in phase 2 trials than phase 3 trials.

This research found an increase in approvals based on single-arm trials -- 12.9% from 2006 to 2010, up to 40% from 2021 to 2025. 

The researchers conclusion says "Continued decline in the proportion of approvals based on overall survival, increase in response rate–based approvals, and underutilization of the accelerated approval pathway all reveal concerning trends." Interesting that they want to see more Accelerated Approvals. 

As I said, this research doesn't include blood cancers, but the trends that they see are pretty close to what I have observed over 18 years of paying attention to the research on FL. I'll admit that I have become kind of a Clinical Trial Nerd over that time, and I have some definite opinions about some things. But I will also remind you that I'm not a doctor or a cancer researcher, so keep that in mind.

The big lesson for me in all of this is that FL has a number of treatment options available to us. The whole reason I've become such a nerd is that there is so much research for me to read. So even when a treatment doesn't get approved, or gets pulled after approval, we still have other options. Don't ever lose sight of that. 

Stay well. More soon. 

EHA: Surovatamig + Rituxan

 I'm still sifting through some of the abstracts from ASCO and EHA from last week, and I found another one from EHA (the European Hematology Association's annual meeting): "SUROVATAMIG (AZD0486) PLUS RITUXIMAB IN PREVIOUSLY UNTREATED FOLLICULAR LYMPHOMA (FL): INITIAL SAFETY DATA FROM THE PHASE 3 SOUNDTRACK-F1 TRIAL."

(The EHA puts its titles in ALL CAPS.)

I don't know much about Surovatamig, which was previously known as AZD0486. I written about it only once before in the blog -- a description of a phase 1 trial that was reported on at the 2024 ASH conference.  Surovatamig is a bispecific, like Epcoritamab and Mosunetuzumab. It works by attaching itself to a cancerous B cell by grabbing on to the CD19 protein on the surface, and then also grabbing on to a T cell by the CD3 protein. In this way, it brings together the cancer cell and the immune cell that can eliminate it. 

The EHA presentation reports on results of a phase 3 trial called Soundtrack-F1. Let me say first of all that "Soundtrack" is a very cool name for a clinical trial. Maybe that's just because I love music so much.

Anyway, the study is looking at Surovatamig combined with Rituxan. It is a phase 3 study, with the goal of recruiting over 1000 Follicular Lymphoma patients who have not yet received teatment, though this presentation looks only at 43 of them. According to the U.S. government's clinical trials website, it has not begun recruiting trial participants in the U.S., which might be why I haven't heard much about it. Once this smaller trial is finished, the larger phase 3 trial will begin.

Still, even with only 43 patients, the researchers had some good things to present at EHA. The focus here is on safety rather than effectiveness -- reporting on the side effects experienced by the participants. The combination is interesting --  Surovatamig targets CD19, while Rituxan targets CD20. So there seems to be, at least in theory, that the two treatments would compliment each other well when used together. But any combination of treatments also means there is the possibility of doubling up the side effects.

For this study, the researchers looked at two different dose levels of Surovatamig, and divided the patients into two groups. It's very early in the trial, so median follow-up was about 6.3 months. The first group, which had a lower dose of Surovatamig, had a 95% response rate. The second group, with the higher dose, had a 100% response rate. At the time that they cut off the data to analyze it, 75% of patients in the lower dose group and 100% of patients in the higher dose group had no Minimal Residual Disease.

As for safety, 100% of patients had Treatment-Emergent Adverse Events (TEAEs), meaning side effects that develop after the treatment has been given. The most common were infusion-related reactions (36% in group 1 and 52% in group 2), mostly due to the Rituxan (not surprising to any of us who have had Rituxan). Other common side effects were fatigue (36% and 43%), muscle aches (36% and 38%) and low white blood cell counts (36% and 38%).

More serious side effects occurred in 18% of the lower dose group and 29% of the higher dose group. Cytokine release syndrome (CRS) occurred in 36% and 38% of patients and one instance of Immune Effector Cell-Associated Neurotoxicity Syndrome (ICANS) occurred in each of the groups. 

The study was specifically designed as a "safety run-in," a smaller study to test for side effects before the larger study happens. It's interesting to me that this is happening in a phase 3 study; that kind of dose escalation (testing different doses to find the best combination of safety and effectiveness) usually happens much earlier. In this case, there wasn't much difference between the two doses in terms of safety, but there was a slightly better effectiveness with the higher dose, so that will be the recommended dose for the larger phase 3 trial.

The larger phase 3 trial will be a randomized two arm study. Half of the patients will receive the Surovatamig + Rituxan combination, and the other half will receive Immunochemotherapy (R-CVP + Rituxan maintenance, R-CHOP + Rituxan maintenance, or Bendamustine + R + Rituxan maintenance). 

There are a couple of takeaways for me. The first is that Bispecifics are clearly going to be in our future as FL patients. This kind of large study isn't messing around -- they're looking for full FDA approval. Lots of newer treatments try to get accelerated approval, and they do that with smaller phase 2 trials and aiming at Refractory/Relapsed disease. This trial has neither. That tells me that Bispecifics are fully mature.    Epcoritamab and Mosunetuzumab are pretty well accepted at this point.

The other thing that strikes me is the care that is being taken to focus on safety. As far as I can tell, there has not been a phase 1 or 2 trial for this combination, but that's probably because there are already known side effects for both of the treatments involved. Still, with so much already known about other Bispecifics, it's a help the the researchers to know what to look for in this type of treatment.

As always, looking at this kind of research being presented at medical conferences tells me that we have lots to look forward to. Not every treatment in a trial will ultimately be approved. In fact, less tan 10% will likely be. But there is still lots being tested, and lots of good stuff coming.

 

MGUS

If that title is confusing, don't worry -- I'll explain. I want to talk a little bit more about what happened at my last appointment with my oncologist.

I wrote about my appointment a few minutes after I got home, so I was still kind of processing it all. Let me go back about 8 months or so.

During my annual physical in the fall (with my general practitioner, not my oncologist), most of my blood work was fine. But my protein level was a little bit high. That number is really general -- there are lots of potential proteins in the blood. The Gen Prac ordered another blood test to see if it was some kind of one-time thing. 

The second blood test showed the same thing. The general test didn't say much, but the Gen Prac said it was somethng we should keep testing for to keep an eye on. At this point, I was getting close to my January oncologist appointment. I mentioned it to him (the Gen Prac and the Oncologist are not on the same Electronic Records system, so he didn't see the blood test results easily). The Onc looked through the test results and ordered some additional tests on the blood test I had done for him earlier that day.  The results came back the same.

So the oncologist ordered some additional, more sensitive tests to see what exactly was happening with the excess protein in my blood.  

At this point, he kind of repeated what the Gen Prac said -- excess protein like this can be a sign of several conditions, including blood cancers. It sounded very general and non-committal to me, given how detailed our discussions usually are. But I also was not in any mood to ask what it all meant, so I let it go.

But he did give it a name -- MGUS, meaning Monoclonal Gammopathy of Unknown Significance. (And if you are a fan of the move The Princess Bride, and that immediately reminded you of ROUS -- Rodents of Unusual Size -- then you and I have something in common.) 

MGUS, as he explained, occurs in about 5% of people over 50. There is about a 20% chance of it turning into something else within 20 years. He told me not to worry about it. We will be actively monitoring for it.

Fast forward to last week. I did a blood test for my Gen Prac a few weeks ago, and the protein level was fairly stable -- a tiny increase. She wrote a message in my Electronic Records about my cholesterol looking good. No mention of the proteins. I took that as a good sign.

The Oncologist did the same general protein level test, and then the more sensitive one. Another increase.

This time he was less non-committal. "So I'm now treating you for two blood disorders -- Follicular Lymphoma and MGUS. It's possible that the MGUS could turn into Multiple Myeloma. We will continue to monitor it and treat it if it becomes necessary."

This wasn't a shock. I've known about this for 6 months. It's not like Lympho Bob isn't going to hear something like that and not start doing research.

But it was still a little bit of a punch to the gut. I put it out of my mind, mostly, but a few days later, my wife and I were on a long car trip to see our son, and it kept creeping into my head.

It brought up a lot of old feelings, things I haven't really felt much in 18 years. The fear never really goes away. It's always just under the surface, bubbling up a little bit when it gets triggered. But this wasn't bubbling up. This was a small gush. It subsided eventually, and when my wife and I had another 4 hour drive on the way home, we talked about it. She had the same feelings return when the Oncologist started to talk about it. 

It helps to try to step back and look at things rationally. And that's not always easy, I know very well. But I did a little more research. The protein levels are indeed high. A normal range is something like 3 to 8 (I'm not even going to look up what the actual range is). Six months ago, mine was something like 8.7. This time it was something like 8.9. Patients with Multiple Myeloma can have levels in the hundreds or even thousands. I'm not there yet.

The more sensitive test of the protein showed that it was the type that leads to the least aggressive problems, if any problems do occur. So that's good news. 

Another potential problem is damage to the kidneys, which have to work harder to eliminate all of that excess protein. The Oncologist had me do a urine test. I got the results back last week. His nurse left a voice mail message saying the Onclogist thought "everything looked good."

So I'm relaxing a little bit now. No immediate danger.  

But it's amazing how much the body remembers, how that same feeling in my stomach returns, how a bit of electricity and heat rises from chest, up my shoulders, into my ears. That fear. It knows its path. It knows how to return. It's ready.

As I have said many times before, I think sharing our stories is one of the most important things we can do. It helps us. It puts the fear into words. That's an important step in dealing with things. Words can be dealt with. Feelings stay where they are and fester. 

But telling our stories helps each other, too. I don't know how many times I've been on both sides -- the teller and the listener -- and realizing that two people sharing the same experience make us both feel a little less alone. Our stories help others realize that there is someone else out there who has felt as we felt. That helps.

And I hope this has helped. It's OK to feel that fear every now and then. And it's more than OK to put it into words and share it. 

Stay well, and keep sharing. 

 

NCCN Guidelines

It's been a while -- I don't like to go more than a week without posting. I've been busy, traveling to see some family and hosting other family members. Exhausting but fun. I wouldn't have it any other way.

But it means I'm behind on reading about Follicular Lymphoma. So I'll do my best with this one (and also mention that I'll be hosting and traveling for another week or more, so expect another delay).

As I look through all of the links that I have been collecting, the one that stands out is a video from The American Journal of Managed Care's website. It's from a series of interviews with Dr. Ryan Haumschild, Dr. Christina Poh, and Dr. Tara Graff. In the series of videos, he provides some insight into newer approvals for Follicular Lymphoma treatment. If you've been reading the blog for a while, you know I like this kind of thing, which is fairly common on oncology websites. It gives an expert a chance to tell us where we are -- a nice overview of what is happening.

The series includes nine videos, but it is video number 7 that intrigues me: "NCCN Guidelines in Focus: Key Updates for Follicular Lymphoma and Their Impact on Formulary Decisions."

The NCCN is the National Comprehensive Cancer Network, a group of 34 cancer centers that work together to produce a series of guidelines for doctors to help them make treatment decisions for many different cancers. The guides are based on current research about the best order to use different treatments. I'd link to the FL guide, but you need to sign in to read them. I can occasionally get to a copy, so I've seen what they look like.

The NCCN Guide for FL are interesting because they provide so many options. There are probably cancers that have guidelines that say "If a patient is diagnosed with stage 3 of this cancer, then treat them with X." Pretty straightforward. Of course, FL isn't like that. There are a bunch of options at every stage. In some ways, that's good -- we have lots of options. In other ways, it would be really nice to have a straight path with one option because that one option works so well.

What intrigues me about NCCN guidelines is how they are used. As I have mentioned before, in my 18 years with FL, I have seen five different oncologists. Three were Lymphoma specialists, doing research on FL and other Lymphomas. The other two were generalists, treating blood cancer patients, but also patients with breast, colon, and other cancers. Those generalists are the ones that seem to rely most heavily on the guidelines, which makes sense. After I stopped seeing one of those generalists, I found a copy of the NCCN guidelines and kind of traced our conversations through the guide. For example, he really wanted me to have a PET scan, even though there was no indication that my disease was progressing. But the NCCN guidelines said that someone in my position can have one every year, so it was OK. Now "can" is not the same as "should." I didn't get the scan, but I did get some insight into how he made his decisions. I also got a new oncologist soon after that. 

So the discussion of the updates to the NCCN guidelines was especially interesting to me. It's a short video -- the main update was that Tafasitimab + R-Squared is now in the guidelines. This combination was approved just over a year ago by the FDA, though honestly, I haven't heard much about it since then. Most of the buzz since then has been about Epcoritamab, the bispecific that was recently approved by the EU in combination with R-Squared. (Dr. Haumschild expects this combination to be approved and added to the guidelines soon.)

I liked his insight into why all of this is important. As more treatments are added to the guidelines, they are likely to be used more. And as they are used, more "real word" data is collected on how effective and safe they are outside of clinical trials. And as more data is collected, we get a better sense of which treatments are appropriate for which patients. The NCCN guidelines are based on just that kind of data.

But data doesn't tell the whole story. Oncologists are human, and have their habits and their opinions, and "the best" isn't necessarily the treatment that the data would suggest.

I guess for me, the lesson for all of this is, first, be sure you are comfortable with your oncologist. Ask questions. Have discussions. In many ways, we are lucky to have a slow-growing cancer, and one of those ways is that we often have time to have those conversations before treatment is needed. The other lesson is, seek second opinions when you can. The guidelines offer lots of options, and it's nice to have a second set of eyes look through the records and make a suggestion. 

Things will slow down for me soon, I'm sure. I'll get back to reading more of this FL stuff then. 

 Take care.