Be Careful About What You Read

I've mentioned before that one of the ways I learn about what is happening in the world of Lymphoma is through a simple Google Alert. Basically, I tell Google to send me an email whenever it finds a word or phrase that I ask it to look for. So my Alert for "Follicular Lymphoma" usually means I get an email in the morning with anywhere from one 1 to 10 links. They can be anything from articles in medical journals to local newspaper stories about fundraising events.

Over the past few days, I have seen a bunch of stories about a man with Follicular Lymphoma in California. He had been given a couple of rounds of chemo, and then went through trial for single-agent Mosunetuzumab, the bi-specific that was recently approved by the FDA for Relapsed/Refractory FL.

It's a nice story. He's a new grandfather, and he had given up hope after the two rounds of chemo didn't work for him. But the Mosunetuzumab did work, and he's been in remission for five years. The story quotes his doctor, who was a principal investigator in the trial. She explains how Mosunetuzumab works this way: It's like putting a pair of glasses on to the T-cell so that it will be able to recognize the one's own lymphoma cells."I really like that explanation. Well done.

It's kind of a typical story. It appears on the website of a local news channel, the kind of feel-good story that people like to hear. I certainly like to see that kind of story.

But it gets a little weird from there. The story seemed to have been picked up by a large aggregator -- the kind of website that collects news from a lot of other sites and puts it in one place. But then, other news outlets took the story and ran it -- but they changed a bunch of it.

Here's the opening for one of those stories:

"A grandfather from Southern California, aged 49, was terminally ill from follicular lymphoma, a type of cancer that affects the network of vessels and glands in the body. However, after using a drug recently approved by the United States’ Food and Drug Administration (FDA), he claims his cancer has been cured."

(I'm deliberately not linking to this story.)

A couple of big changes right away: First, the original article didn't say his cancer was "terminal." It did say that he had a very hard time with the two rounds of chemo, and didn't want to do a third one, and his doctor said he's only live for another year if he didn't have treatment. That's a very different situation -- "terminal" implies there are no more options left, not that someone is refusing the options that are available.

The second big change: nowhere in the original article does the patient say he was "cured." That word is just as loaded as "terminal" when it comes to FL. I have some very strong -- and very personal -- feelings about the word "cured" when it comes to Follicular Lymphoma. It's not a word I use very lightly. I assume the writer of this weird second article is taking the "5 year remission" and assuming that means a cure, which is a common assumption in some cancers, but not in FL. And putting that word in his mouth is just sloppy journalism. The article also uses the glasses" comparison, but doesn't quote the doctor. In fact, it doesn't mention a doctor anywhere in the article. It all makes it sound as if this FL patient decided on his own to take the bi-specific and then has declared himself as cured, with no medical professional a part of any of it.

To me, the lesson is this: be careful what you read. A sloppily-written piece of journalism can provide some false information that can be harmful to patients. Maybe it gives incorrect information about something that could have seriously harmful effects on patients, causing them to trust something that they shouldn't. In this case, maybe two little words aren't a big deal. But maybe they could be -- maybe they misrepresent a disease in ways that just cause confusion and stress to people who have enough confusion and stress in their lives.

And that's not to say that Mosunetuzumab is bad (it seems pretty great to me), or that it won't end up being a cure some day. But we can't say that today, and nobody involved in this story DID say that it was a cure, and that's frustrating. 

So again: be careful what you read, whether it's really positive or really negative. There's a lot to be positive about when it comes to FL, but be sure that the things you read -- whether they come from a local news story or a well-meaning friend or a support group member -- match up with what the science says. It's easy for just a few small words to distort the truth in harmful ways.

 

Infection Risk in FL Treatments

Interesting research published last week in the European Journal of Haematology. Not very happy, but important.

The article is called "High Risk of Infection in ‘Real-World’ Patients Receiving Ibrutinib, Idelalisib or Venetoclax for Mature B-cell Leukaemia/Lymphoma." 

The quick summary: what we know about a treatment's side effects comes from clinical trials. Once a treatment has been approved for a particular use, there seems to be less research on side effects, so what we know about them is what we learned from the trials. There might be more research on effectiveness that happens after the trials, but not a lot of side effects. 

And I understand that impulse. I have mentioned a bunch of times that I have to stop myself from focusing only on how effective a treatment is, and ignoring side effects. The numbers for effectiveness are more hopeful and happy. So I make sure to mention the side effects -- the "Adverse Events," as they are called in clinical trials. They're important. Effectiveness doesn't mean anything if a treatment does a lot of harm. As someone said to me once long ago, "You can put cancer cells in a test tube and add gasoline. The gasoline will kill the cancer cells, but do you really want to put gasoline into your body?" The point stuck with me.

So I find it very interesting when researchers go back and look at treatments after the clinical trials are all done. It's called "real world" research. A treatment might be approved based on the results of 500 patients in a phase 3 trial. And then maybe thousands more patients actually take the treatment, and the effectiveness and side effects don't match up exactly with what happened in the trial. Those 500 patients are an excellent sample, but not always completely accurate. 

And that's what this article is doing. It looks specifically at three treatments used for B Cell Lymphomas and Leukemias -- Ibrutinib, Idelalisib, and Venetoclax. And it found that patients had a greater risk of developing infections than the trial results suggested.

While these three particular treatments are used effectively for a bunch of different blood cancers, they have had mixed results for Follicular Lymphoma. Venetoclax and Ibrutinib have both been tried on their own for FL patients, and didn't do as good a job as they have done for other blood cancers like Chronic Lymphocytic Leukemia. But they do seem to work better as part of combinations (like the ViPOR combination of Venetoclax, Ibrutinib, Prednisone, Obinutuzumab, and Revlimid). 

Idelalisib is a different matter. It was given accelerated approval for Follicular Lymphoma based on phase 2 trial results, and then problems came up during the phase 3 trial that would confirm the smaller trials results. The company that makes Idelalisib withdrew the treatment from the market. The official reason was that they were having a hard time recruiting patients for the phase 3 trial due to Covid, but unofficially, it wasn't selling well, and the FDA was finding problems with other similar inhibitors. So to me, it's not a surprise that researchers would find more problems than the clinical trial found.

What this research found was that patients who received these three treatments developed infections at a greater rate than patients in the trials. In the small study (67 patients), 48% developed a severe infection. The median time to first infection was 5.4 months. All of that makes sense -- these treatments work by going after cancerous immune cells, but also normal immune cells, so patients are more prone to infections. 

More importantly, the researchers found that patients had more problems when they had high scores in ECOG (Eastern Cooperative Oncology Group) performance status and high CCI (Charlson Comorbidity Index) scores. Both of these tests are very common and also make sense, since they are based on traits that would show that  patient is more likely to have health problems. (You can learn more about ECOG scores here, and  CCI Scores here.)

The major point for me in all of this is to remember that all treatments have side effects, and if you're in the habit of reading about Lymphoma research (and that's probably a reason that you're here), you need to look at all of the results of research -- the bad stuff as well as the good stuff. And when it does come time to need treatment, and you have options, it's important to as the doctor about things like side effects. Quality of life matters -- maybe a less aggressive treatment with a shorter PFS is more important to you than a more aggressive one with a longer PFS, if the less aggressive one means fewer potential side effects. More questions to ask makes for a better experience.

More fun Lymphoma research coming soon. Take care of yourselves.

"Celebrating" My 15 Years

In case you were wondering how I celebrated my 15 year diagnosiversary, I can tell you that it didn't go as planned. I tested positive for Covid-19 a couple of days before.

And I'm doing fine -- I want you to know that right away. This is my first time getting Covid, even though people I live with have gotten it twice before, and despite my being in very close contact with them, I managed to avoid it.

I wasn't so lucky this time. I felt a little tired on Friday, and had a headache on and off. It felt like the start of a really bad cold. So Friday night, I thought it was a good idea to take a test, just in case. It came back positive. Two of my kids were home with my wife and me, so we all put on masks and I did my best to stay away from them.

Saturday morning, I called my oncologist's office left a message with his answering service. The doctor on call got back to me within a few minutes. I told her that Dr. H, my regular oncologist, had told me that if I did test positive to call him right away so he could prescribe Paxlovid, the anti-vital treatment. The doctor on call gave me the prescription right away, and I started the treatment immediately. I'm sure it helped, though I've also been dealing with "Paxlovid Mouth," a common and harmless but annoying side effect that involves having my mouth always taste like I'm eating really burnt toast covered in dirt marmalade. Not very pleasant, but more annoying than harmful. 

I felt pretty bad on Saturday, though I haven't had a fever or any breathing problems. On Sunday, the day of my diagnosiversary, I ate dinner in a separate room and enjoyed some gingerbread cake with whipped cream.And I felt a little bit better that day.

Not really the celebration I had hoped for. My plan was to go to the beach, as I had done a couple of years ago. And then on Monday, we were going to extend the celebration and sneak sandwiches into an afternoon movie, as we've done in years past. We hung out at home and watched a movie together, masked, with me at a distance. Still nice.

And despite our efforts, my wife and kids ended up testing positive anyway. Not a surprise. We were in pretty close contact before I tested positive, not knowing.

So, once again, be assured that I feel OK, other than a weird taste in my mouth and missing out on the thrill of breaking the rules at the local cinema. And a little bit of a hoarse voice. I assume that my feeling good will continue.

As you all know, I'm a big fan of science, so I'll give some credit to my ant-vital medication, two vaccine doses, one booster shot, and a bi-valent shot.

I hope you all are taking care of yourselves. 

I'll let you all know when that weird taste goes away.

15 Years

Today is my 15th diagnosiversary. 

I was diagnosed with Follicular Lymphoma 15 years ago. And I began my first Rituxan treatment 13 years ago today, after 2 years of watching and waiting. 

As happens every year, I start thinking about this day about a month before it comes. I'd like to share what I've been thinking about lately, and what I've learned in my 15 years as a cancer patient.

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Something kind of remarkable happened a few weeks ago in the world of United States politics. 

I don't like to talk much about politics in this blog, because it divides us too much, especially in the last few years. And that's what made this event from a few weeks ago so remarkable. It involves two politicians, from very different sides of the political divide. I won't even give their names or link to a story about it. But it's safe to say that they believe in very, very different things, and see the world in very different ways, and both are very vocal about it.

One of them was diagnosed with cancer -- Diffuse Large B Cell Lymphoma, FL's more aggressive cousin. In the announcement about the news, he called the cancer "serious, but curable," which is probably an accurate description.

The news was greeted on sites like Twitter in some very expected ways -- good wishes from people who agreed with this politician, and some nasty words from people who disagreed.

But one politician, someone that he clashed with a lot, posted a very surprising and supportive message in Twitter:

We disagree often, but I’ll be praying for [the politician]. Cancer is a terrible disease. I watched my father die from it, and it broke my heart. It’s good [he] has hope and his form of cancer is curable with the treatment he will be starting.

The politician who was diagnosed responded: 

Thank you, [her name], for this touching message, which my youngest daughter showed me. I’m grateful for your concern and very sorry to learn that you lost your father to cancer. Wishing you happy holidays with loved ones.

 I can honestly say that the exchange made me cry.

As different as we are from one another (and we live in a world that seems to highlight those differences), cancer somehow brings us together. There are experiences, words, even tastes and smells, that we all share (if I mention the saline taste before a scan, you probably know just what I mean). We've all heard the words "You have cancer." It unites us in ways we would rather not be united in.

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All of this me think back to some of the connections I have made with people over the last 15 years because of cancer. Last week,  I got tired of my youngest child making fun of how big my email inbox is -- I don't erase any old emails. I'm a digital pack rat. So last week, I did my best and went through my 500 old emails and erased a bunch that I never should have kept in the first place.

But one thing I found was that I had dozens and dozens of emails from many of you -- readers of the blog. And I hadn't erased any of them. 

I'm sure there is a psychological reason for not erasing those emails. (And if you're a psychologist and you know what it is, keep it to yourself. I'm all for self-awareness, but not today.) I do know that one reason I saved them was because, every now and then, there are some of you that I like to check in on. I'll just start thinking of you, usually when I haven't heard from you in a while, and I'll send an email, so I need your addresses. It makes me feel better.

I don't do that for everyone, because sometimes, it just feels like I'll be invading someone's privacy if I sent an email out of the blue. And I don't want to do that. The same child of mine who thinks I save too many emails also warns me that certain behaviors are "creepy" and "cringey." Which I understand. So I avoid intruding on people's lives. Some people have successful treatment, and want to move on from thinking about cancer so much, and I can just be a reminder of their cancer. And I don't want to be that.

But it is important to me to stay connected. And I really do love getting email from readers. It validates the work that I do, obviously (over 1600 posts -- it's been a lot of hours of reading and writing). I like hearing that people like the blog -- who wouldn't? And sometimes the emails are very flattering (Someone once wrote to me, and I responded to her questions, and she wrote back again to tell me that it felt like she was talking to a celebrity. My kids made fun of me for that.) But it's more than just getting "fan mail" or something like that. Even after 15 years, it feels good to hear from someone who has been through the same experience. It's more than validating the work; it's validating the life. I'd never wish cancer on anyone, but it's nice to know you're not alone in it. 

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That's one of the great benefits of being in a support group -- knowing you're not alone. I've been thinking lately about that support group that I sometimes mention. I found it just a few days after I was diagnosed, and it was a huge help to me in those first few years. It still exists -- there's a link to it in the "Sites I Like" list. I still visit it every few days. It's changed a lot. You'd expect it to change after 15 years. Some of the same people are still on it, which is great. But there are fewer people, and fewer posts. There are a whole lot more places to go online for information than there were in 2008, and more places to go for community and connection as well, which is probably why it's less active than it used to be.

Those early days after my diagnosis were so hard, and the connections I made in that group were so important. There are folks from that group that I have stayed connected to, on Facebook and Twitter, and that I have worked with in different ways over the years, trying to support one another in helping other patients. One ran a charity that supports lymphoma patients, and who asked me to take it over from him -- I turned it down because one thing that cancer has changed about me is that I really don't want to be in charge of anything anymore. Plus I really like my current job and wouldn't want to leave it. Another started a charity that provides free vacations for cancer patients. I've tried to support that one, too. I've stayed fairly close to some people that I've never met in person, but who have been very important in my dealing with cancer.

But for all the connection and success from those early days in the support group, all those folks who are still around, there are a few people who are gone now, and whose memories stay with me. One was a young girl, about 18 or 19. She had just started her first year of college when she was diagnosed with an aggressive lymphoma. She was treated successfully, but it didn't last long, and her family's health insurance was cancelled. (This was before the Affordable Care Act, so private health insurance could be cancelled because someone had a "pre-existing condition," meaning that since they had cancer, they were too much of a risk for the insurance company.) There were months of posts from her about fundraisers so she could get a stem cell transplant -- there were people she had just met in college a few weeks before she was diagnosed, and now they were working to raise thousands of dollars to help her. Unfortunately, she wasn't able to raise enough money and she wasn't able to get the transplant. 

That was devastating. I didn't know her well, but it hurt for lots of reasons. It was a young life gone before it really started. It made clear that my health was at the whim of an insurance company. And it made me understand how important it was that the healthcare system in the U.S. be changed. (Like I said, I don't do politics here, but I'll do it when it involves the lives of cancer patients, and there is a lot of change to the healthcare system that still needs to be made.)

Another memory -- an older woman who joined the group and immediately became everyone's best friend. Another FL patient, we bonded quickly and supported one another. She used to call me "Little Bro." She'd already had a few different treatments when we met. She died fairly suddenly, not from lymphoma, but from the complications from all of the treatments that she'd had. I remember that my wife was away for the weekend, visiting her old college roommates, when I got the news. Not a lot of big lessons there, other than a harsh reminder about how fragile life is, and of how important it is to not take anyone for granted. 

Maybe that's why I save all of those emails. I want to hang on to all of you for as long as I can. The good news is, so many of you have been hanging around for a really long time.

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Two more people I've been thinking of lately. Both of them are parents of kids who went to school with my own kids when they were young.

One if them is a doctor. I knew that both he and his wife were doctors. His wife's schedule must have been more flexible than his, because I rarely saw him when it was time to pick up the kids after school. But I did see his wife, and we talked a lot. When I was diagnosed with FL, I told her about it. She wasn't really familiar with FL (she wasn't an oncologist), but it turned out that her husband was. And not only that, he ran the biopsy lab for the hematology unit at the big research hospital nearby. "He's probably the one who saw your sample and diagnosed your cancer," my doctor friend told me.

The other person I was thinking of was not a doctor. I didn't know what he did for a living. But one night, he and I were part of a group of dads that had volunteered to paint the bathrooms in the school before a big inspection. (Parents were often recruited for things like this to save money. I'm a very good house painter -- I did it during the summers all through high school.) After we finished, at about 10pm, the group of dads all shared beers in the school parking lot. We talked about our health and our failing Dad Bodies, and my diagnosis came up. He asked what treatment I had, and I told him it was Rituxan. Turned out he works as a lab technician for a pharmaceutical services company. "I mix that stuff every day," he said. "I probably mixed the bag you had for your treatment."

We live in such a weird, small world. 

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I've heard people say that being a cancer advocate is like dropping a small stone in a pool -- the water ripples outward in circles. The things we do can affect others near us, but some that are far away, too. 

What most of us don't notice is that those ripples hit the side of the pool and then come back town the place where the stone was dropped. We affect others. But those others affect us, too.

And most important -- sometimes it's hard to remember that we're all in the same pool. None of us is alone. It might seem that way sometimes, when others aren't physically near us, or when people who are near us don't seem to understand us. But what I've really learned over 15 years as a cancer patient is how many of us are in the pool, sharing the same water, bumping up against the same little ripples and big waves.

I'm thankful that all of you have been here to share this experience with me, whether you've been around for 15 years, or 15 months, or 15 minutes. You'll all a reminder of the things that connect us. I'm thankful that you keep reading, and keep writing to me in emails and comments, and keep working hard to deal with this life that we live as FL patients.

Thanks for reading. I look forward to another year with you. 

RareCancerLyfe

Short post today. I want to tell you about a new website called RareCancerLyfe.

RareCancerLyfe is an online community for patients with rare cancers. There are a few definitions out there for what makes a cancer "rare," but Follicular Lymphoma is indeed considered a rare cancer. According to the National Cancer Institute, a "rare cancer" is one that has fewer than 40,000 new cases each year. FL has about 15,000 to 20,000 each year. 

Sometimes it's hard to think about FL as "rare," especially if you're like me, and read and think about it every day. But all subtypes of Non-Hodgkins Lymphoma make up just 4.3% of all cancers in the United States, and FL make up only a third or so of NHL cases. So comparing it is rare.

Why is that significant? Well, in terms of patients, it means it's less likely that, as a patient or caregiver, you know someone who has had FL (unless you're part of an online community). And that means fewer chances to connect with others.

So RareCancerLyfe is trying to respond to that, providing a space for patients with all kinds of rare cancers. Because even if one person on the site has FL, and another has Ewing Sarcoma, and another has Glioblastoma, we all have many things in common. We all know what it means to have cancer, and all of the baggage that comes with it. This is a nice place to connect with others.

My own interest in the site comes from my being an Ambassador for Lyfebulb, another site that focuses on patients of all kinds with chronic disease (and yes, FL is a considered a chronic disease, something that most of us will live with for a very long time). As an Ambassador, I let people know about the good things that Lyfebulb and its affiliates are doing.

And I do think RareCancerLyfe will do some good things. I encourage you to take a look. Click around at some of the Active Discussions and see what people are saying (you might even find a few responses from me). Add to the conversation if you have something to say -- you might be amazed at how often people were waiting to hear a story like yours.

25 Years of Rituxan

One of the ways I find out about what's happening in the world of Follicular Lymphoma is by Google Alert. I ask Google to let me know any time it finds something new on the web that mentions FL. So pretty much every day I get an email with some links. They can be anything from an article in a medical journal to a video on a web page for oncologists to a story in a local newspaper about a fundraiser for someone who was recently diagnosed. It gives me a pretty good sense of what's going on with FL.

So I was very intrigued by a notice I got a few days ago about an article in the Journal of Clinical Oncology called "Rituximab Chimeric Anti-CD20 Monoclonal Antibody Therapy for Relapsed Indolent Lymphoma: Half of Patients Respond to a Four-Dose Treatment Program." 

I was also kind of thrown off. I hadn't heard about any real new research in the use of Rituxan (its generic name is rituximab, and it's known in some parts of the world as Mabthera). I think it was the word "chimeric" that really caught my eye. "Chimieric" is the "C" in "CAR-T," so I thought maybe there was some new CAR-T -like version of Rituxan in clinical trials (but, again, I hadn't heard anything about it, and I usually would have). 

I did a little more digging, and it turns out that the article isn't new at all. In fact, it was published 25 years ago, and it's part of the JOC's "Flashback" series, where they republish important articles from the past and then include a commentary about it.

The commentary comes from Dr. Jonathan Friedburg, the editor-in-chief of the journal. His commentary is called "Flashback Foreword: Chimeric Anti-CD20 Monoclonal Antibody Therapy," and it makes clear just how important Rituxan has been to those of us with Lymphoma. 

So, just to be clear here -- This article is the first report from a clinical trial for Rituxan, from 25 years ago. The results were good, though not eye-popping by today's standards. There were 161 patients with several indolent lymphomas in the trial, and 48% had a response. The median duration was just under 12 months. Most side effects happened after the first or second of four infusions, with fever and chills being most common. [That was me -- allergic reaction with chills during the first infusion.] Only 12% had a severe side effect.

But that 48% response, as the article says, was comparable to single-agent chemotherapy at the time. 

It was the beginning of a very important period in Lymphoma research. As Dr. Friedburg's commentary points out, one of the important outcomes of the study was to show that Rituxan was especially effective on Follicular Lymphoma. The study looks at "indolent lymphomas," as the title says. FL is one of several slow-growing lymphomas that were often studied together in clinical trials (and still are). This study showed that the response rate for FL was 60%, while patients with another slow-grower (SLL) had a 13% response rate. This led future research to focus on FL in particular.

It was later on, when Rituxan was added to chemotherapy, that its importance really became clear. Rituxan just made other treatments better. Both single-agent chemo and Rituxan had response rates of just under 50%. But R-CHOP, combining Rituxan with several chemo agents, had a response of almost 90%. Pretty amazing. It's safe to say that Rituxan is at least partly responsible for the median Overall Survival of FL patients jumping from 8-10 years in the 1990s to 18-20 years today.

What amazes me most about Rituxan (and this is confirmed in Dr. Friedburg's commentary) is that researchers still don't exactly how and why it works. They have some very good guesses, but they don't really know for sure. You can watch this video if you want to see how Rituxan operates. Very cool.

As you know if you've been reading for a while, I am a big fan of Rituxan. I had single-agent Rituxan almost 13 years ago, and it has done its job for me all of that time. In years past, when I wrote about Rituxan in this blog, I'd call it "my best friend Rituxan." It's been very good to me, and to a lot of other patients with Follicular Lymphoma.

So there's your history lesson for the day. If you're looking for an excuse to have a drink, pour one and make a toast to Rituxan. My best friend definitely deserves it.

ASH: The Leonard List

Happy New Year!

I'm ready to take on another year of reading, thinking, and writing about cancer, after a few days rest. My wife and I just celebrated our 30th wedding anniversary, and we spent a few days at Rehoboth Beach in Delaware with some family. We have some very nice memories of times we have spent in that area, and we had beautiful mild weather that let us enjoy some walks along the beach.

I want to wrap up my look at the ASH conference with this year's Leonard List. This is a list of ASH presentations put out by Dr. John Leonard, a blood cancer specialist at Weill Cornell Medicine in New York. Every year, just before the ASH conference, he gives a "Top 10" list of the sessions he finds most interesting. They're not all about Follicular Lymphoma, but some are broad enough that they affect many blood cancer patients, including those of us with FL. (There was a lot of talk about Diffuse Large B Cell Lymphoma this year, and that's reflected in Leonard's list.) I'll have a just a few comments on some of the items on his list.

You can find Dr. Leonard's full list here, as a podcast. You can listen to him discuss his list, or read (or translate) a transcript.

#7B. A few times on the list, Dr. Leonard had two discussed two related presentation sat the same time. That's true for item #7, which looked at two presentations on racial disparities. #7B was abstract 2902: "Current Status of Racial and Ethnic Disparities for Follicular Lymphoma: A Surveillance, Epidemiology, and End Results (SEER) Database Analysis with Emphasis on Hispanics." This research looked at the SEER database, with information on almost 60,000 FL patients, and found that Hispanic FL patients were different from the average in the database -- they were diagnosed at a younger age, and were had a better survival probability at 2, 5, and 10 years, and better Overall Survival. Why is that the case? The data does not show why. The researchers seem to suspect there is some ind of biological difference that has yet to be discovered. I'm not sure what it might be, but I do find it fascinating that it might exist. Part of me wants to believe that we are all the same as human beings, but another part known that when we get down to the very smallest parts of us, there are probably some differences.

#5 on the Leonard List is another that is broken up into two parts.

#5A looks at abstract 798: Incidence of Second Primary Malignancies in Lymphoma Survivors: A Prospective Cohort Study in the Modern Treatment Era. I've written about this topic a few times recently -- the idea that as lymphoma patients, our immune systems, and the treatments we might receive, can make us more vulnerable to getting a second type of cancer, in addition to our lymphoma. Like earlier research, this one shows that Lymphoma patients are more likely to get another cancer (often another blood cancer or a skin cancer), and we need to be careful to get additional screenings, especially for skin cancer. A second blood cancer like leukemia would probably be found while we pay attention to our FL, but we need to stay aware of lots of other types.

#5B on the list is related, in that it looks at issues of survivorship -- what happens after treatment is finished. This one looks at abstract 448: "Reproduktiv Patterns Among Non-Hodgkin Lymphoma Survivors By Subtype in Sweden, Denmark and Norway." To summarize, patients with indolent lymphomas like FL had an easier time having children after diagnosis than patients with more aggressive Lymphomas. This could be because many FL patients have less aggressive treatment, or even watch and wait. This personally was not an issue for me, since my wife and I were finished having kids by the time I was diagnosed, and I'm guessing that's true for many FL patients, who are often diagnosed after age 60. But I know of plenty of people who were diagnosed earlier, and who had still hoped to have children. I like to think that oncologists are aware of this issue and make it a regular part of their discussions at diagnosis. There are certainly ways to help cancer patients who may hope to have children after treatment. 

Finally, Dr. Leonard offers five bonus abstracts after his top 10. (It's a good sign that his top 10 actually includes about 20 presentations -- there's lots to be excited about.)

One of the bonus abstracts is number 2907: "Administration of Obinutuzumab, and Not Rituximab, during Induction and Maintenance for Follicular Lymphoma Increases the Likelihood of Developing Delayed Neutropenia." As a reminder, Obinutuzumab is a monoclonal antibody, similar to Rituxan, thought to be an improvement on it. While it has some advantages over Rituxan, it also has some disadvantages, and this research points to another of them. Looking back at patient records, research found that 23% of patients who received Obinutuzumab with Bendamustine had delayed Neutropenia, which is a lowered level of a type of white blood cell that fights infections. While it is usually considered benign, a significant number of patients in this study were hospitalized because of it. This isn't necessarily a sign that Obinutuzumab shouldn't be give to patients, but Dr. Leonard thinks it should probably be a reason for some discussion about options when it's time for treatment.

So that's Leonard's List for ASH 2022. I like it because it covers so many aspects of being a Lymphoma patient -- not just looking at research on new treatments, but also at issues like survivorship, and thinking about how to make current treatments more effective. Our experience is so much more than just "the latest thing" (though I know I tend to focus on that myself).

And that's our lesson as we move into 2023 -- being sure we focus on our whole selves. Not just the physical, but also the emotional, spiritual, and any other aspects of our selves that allow us to live as full a life as we can.

I'll do my best to keep up the conversation.

Have a happy, healthy new year. Thanks for reading.