ASH Follow-Up: The Leonard List (and New Year's Wishes)

This is probably going to be my final blog post of 2021. I'd love to be able to give you some kind of special "End of the Year" list like I did last year, but honestly, I'm too tired to go back and look at everything I've written. I need a break. We all do.

Instead, I'm going to do one more ASH follow-up, commenting on some of the selections from this year's Leonard List, and think about what I hope will happen in the new year. So instead of looking back to this past year, I'll look forward to next year, with some New Year's Wishes.

The Leonard List is put together by Dr. John Leonard from Weill Cornell Medicine in New York. He's a very well-respected Lymphoma expert (he's the oncologist for at least one of you out there, I'm pretty sure). Every year, he does a kind of count down on Twitter of what he thinks are the 10 most interesting or important abstracts at ASH, and then he discusses them in a podcast.

You can listen to that podcast here, or read (and/or translate) a transcript of it, too. 

I want to comment on a few of his choices, especially those that relate to Follicular Lymphoma.

The first one, though, is #9 on his list: "566: Enrollment of Black Americans in Pivotal Clinical Trials Supporting Food and Drug Administration (FDA) Chimeric Antigen Receptor (CAR)-T Cell Therapy Approval in Hematological Malignancies."

As Dr. Leonard says, this presentation looks at health disparities -- how some groups of people get better or worse access to healthcare than others; in this case, it's worse access to clinical trials for CAR-T for African Americans. I've been doing this blog for almost 14 years now, and I've interacted with FL patients from all over the U.S. and around the world, and more and more, I'm seeing the differences in health care treatment among patients. I am aware how incredibly lucky I am to have the access to health care that I have. The issue of healthcare disparities really hit home for me a couple of months ago, when I was a patient reader for the Peer-Reviewed Cancer Research Program, helping to decide how to distribute grant money to cancer researchers. I can't go into detail, but I will say that one grant proposal we looked at made it very clear that there are groups of people in the U.S. who are not getting the help they need. I've known that for a long time, but, as I said, this grant proposal included some detail that really showed how much we need to change the healthcare system in the U.S. So while this proposal isn't about FL specifically, it really resonated with me. I can't possibly hear stories from so many of you and not see the problem. My New Year's Wish here is that the next few months brings at least the start of some change in making healthcare more accessible to everyone. It's going to take a lot of work.

Number 8 on the Leonard List does deal with FL -- "709: Tumor-Confirmed Follicular Lymphoma Mutations Are Detectable in Peripheral Blood Years Prior to Clinical Diagnosis." As the title suggests, this very early research showed that, for some FL patients, genetic evidence of FL shows up years before they are diagnosed. The researchers looked at blood samples from 100,000 people in a cancer prevention study, and then identified 29 of them that were later diagnosed with Follicular Lymphoma. From that group 7 patients had gene mutations in their blood that is identified with FL -- in one case, almost 10 years before a clinical diagnosis (a biopsy that showed FL). As Dr. Leonard said, it's an "interesting concept" to think we could identify FL so early. But look at those numbers -- a very small group of patients (only about 25%). And even if we were able to identify potential FL patients early on, there would still be lots of work needed to figure out what to do about that information. Somehow treat those mutated cells years early? Keep watching and go after them once they become cancerous? Develop new treatments based on the mutations, maybe some sort of inhibitor? Figure out if it's worth treating someone for years for a problem that might now even happen?

Still, to me, it's an intriguing study because it's another example of research of biomarkers -- some kind of protein, or gene, or enzyme that is related to FL (or some other cancer). With more and more researcher being based on genetic properties, my guess is that biomarkers will ultimately play a role in whatever long-term treatment ends up helping FL patients. So that;s another New Year's Wish -- more successful biomarker research.

Next up is #5 on the Leonard List -- "51: Mental Health Among Patients with Non-Hodgkin Lymphoma: A Danish Nationwide Study of Psychotropic Drug Use in 7,201 Patients and 36,005 Matched Comparators." This study looked at mental health issues among Lymphoma patients in Denmark (including about 40% of patients in the study who have FL). The study found a much higher incidence of psychotropic drugs (things like anti-depressants) among Lymphoma patients than the general population -- about 3 times as much. Clearly, getting a cancer diagnosis can lead to emotional distress. As I have said for many years, FL in particular is as much an emotional disease as a physical one, because so many of us have few physical symptoms, but we also have the knowledge that this is considered an incurable disease. That's a heavy psychological burden. I like Dr. Leonard's conclusion, though -- "But I think those of us that are dealing with patients with lymphoma, or those who may be patients with lymphoma, should be aware of this, the potential need for help and services for patients with lymphoma. And if you're a patient with lymphoma dealing with mental health issues, it also says that you're not alone and you should really be exploring this and getting the help that you need."

My New Year's Wish here is that those of us who need mental and emotional help will find it, and (for some of us), will find the courage to ask for it. You're not alone in needing help sometimes. There's no sense in asking for help for physical symptoms while refusing to ask for help for emotional ones.

Next, #4 on the Leonard List -- "815: Long Term Follow up of the Resort Study (E4402): A Randomized Phase III Study Comparing Two Different Rituximab Dosing Strategies for Low Tumor Burden Follicular Lymphoma." A study on when to give Rituxan doesn't seem like it should be this high on the list, given that Rituxan has been around for about 25 years now. But Dr. Leonard calls this study "important." It compares two large groups of FL patients that had just Rituxan as their first treatment. One group was then given Rituxan Maintenance right away, and the other was only given Rituxan after the FL came back or got worse. After 7 years, 83% of the Maintenance group had not needed chemo as a second treatment, compared to 63% of the "wait until it comes back" group. There was no difference between the two groups in Overall Survival, and no difference in how many patients transformed to a more aggressive type of Lymphoma.

The lesson here for Dr. Leonard is that patients who receive only Rituxan can do very well for a very long time. (As you probably know, I am one of those patients -- not a participant in this study, but someone who has gotten a very long-term benefit from Rituxan.) The study may be important enough to get some doctors to reconsider their approach to low tumor-burden FL, being less aggressive with early treatments and sparing patients some financial burden and physical side effects. 

It's a good example of a trend in this year's ASH conference -- not much groundbreaking new research, but some solid research on treatments that are already available that we might be able to use more effectively. that's my final New Year's Wish -- that we all have doctors that think carefully about the options available to them, who don't rely on old habits, and who consider how the treatments they recommend will affect all aspects of a patient's life. 

It was a tough year in many ways. I hope next year is better, for all of you individually, and for all of us as Follicular Lymphoma patients and caregivers. 

As always, thanks for reading. I look forward to sharing more with you in 2022.