ASH: Leonard's List/Quality of Life

The ASH conference is happening this weekend, so I can't really call these "previews" now. I'm far behind in my attempts to write about what's happening there.

For this post, I'm looking at "Leonard's List." This is the annual list of the Top 10 presentations at ASH, in the opinion of Dr. John Leonard, a blood cancer specialist at Weill-Cornell in New York. I like Dr. Leonard a lot. He is as good as it gets when it comes to expertise, and he explains things very clearly for a non-expert audience. 

So every year, in the 10 days before ASH begins, he releases the next entry on his Top 10 List on Twitter/X. Then he does a podcast episode on the Weill-Cornell CancerCast where he goes into a little more depth on the whole list. 

He does mention a couple of Follicular Lymphoma-related presentations on the List, but I was surprised to see that an FL presentation was one of the ones that tied for his top spot. 

The presentation is called 3761 Frontline Management Strategy and Quality of Life in Follicular Lymphoma: A Multi-Institutional Prospective Cohort Study.It came in as co-number 1 with a similar study of Quality of Life for patients with CLL, another indolent, slow-growing, incurable blood cancer. 

The presentation looks at 1544 FL patients who have Quality of Life data available (along with information on disease status, health behaviors, and functional assessment, treatments, disease relapses, and deaths). All of this information was collected by surveys that the patients took when they were diagnosed and then every year after that, along with medical records. The idea was to try to measure changes in the patients' lives that could measure their Quality of Life -- the physical changes to their bodies as a result of the cancer and its treatments, but also the emotional changes that they went through. 

They divided up the patients into three groups, based on how their disease was managed at diagnosis -- Observation (those who watched and waited), Treatment (those who received systemic treatment right away, like chemotherapy or immunotherapy), and Local (those who had radiation right away).

The results were very interesting.

The patients in the Treatment group had the worst measure of Quality of Life at diagnosis. This makes sense -- patients who watched and waited probably had less aggressive disease, and those in the radiation group were likely stage 1 or 2 with fewer symptoms.

But as time went on, the watch and wait and radiation groups had a lower Q of L as time went on, probably because their physical symptoms got worse. Also interesting -- for all three groups, some of the less physical measures got worse over time, including social/family relations and emotional well-being. 

In some ways, all of that makes sense. I know from experience and fro talking to so many of you that watch-and-waiters can feel the emotional burden of their decision over time. We get used to it, but for many of us, knowing that we have cancer but not actively treating can have a real negative effect on us.

So why did Dr. Leonard include both of these studies as his #1? Well, the CLL patients in the other study (remember, it's an indolent lymphoma, and lots of CLL patients watch and wait, too) study had the opposite results -- their Quality of Life improved over time. 

Dr. Leonard has a few things to say about this.

First is that we need to consider the value of early treatment. In other words, doctors often recommend watching and waiting for patients with FLL or CLL or other indolent blood cancer, assuming it's always a good thing. No treatment (and thus none of the physical side effects) is a good thing, right? 

Maybe that's not always the case. Maybe the better approach would be to determine the circumstances for individual patients. Some of us might be better off with treatment right away, even if the disease is stable and their isn't a physical need.

For what it's worth, I've been telling other FL patients this for a long time. If the emotional (not just the physical) symptoms suggest that treatment is better -- because the emotional burden of living with cancer without treating it might be too much -- then treatment should be an option. And for patients who have watched and waited for a few months, who discover that it's just too hard to live with, delayed treatment should be an option, too.

The other big lesson?In Dr. Leonard's wise words:

"But this really highlights the fact that we need to focus in follicular lymphoma and in CLL for watch and wait patients in particular, but in all patients, we need to have better tools to focus on quality of life because frankly for many patients who will not die of these diseases, but with these diseases, targeting quality of life and the choice of to treat or not to treat or what treatment to choose is really a key important factor in making this selection."

And he goes on:

"It strikes me that some patients might benefit from intervention, and we should identify those patients and maybe treat them a little earlier to improve their quality of life or give them some strategies to cope with the disease. And others may benefit from a different approach. Whether it's intervention or observation, trying to figure out who manages better based on the nature or the choice of intervention or just doing an intervention or not is really important and valuable and something that I think we need to focus more and more of our efforts on as we look at patients and think about what is the best way to approach their disease when they have many options."

And that's key. As patients, we do have options. The beginning of our lives as cancer patients is the worst time to make any kind of decisions. Our brains just aren't as rational as wed like them to be. So having a doctor take the time to lay things out for us is vital -- especially if we're in a place where the disease is stable and we don't need to make a decision immediately, as patients with more aggressive cancer have to do.

I do hope that researchers continue to pay attention to Quality of Life issues, both the physical ones and the emotional ones, and as a community, we continue to find ways to make it easier to live with the disease.

In some ways, I with that Dr. Leonard's #1 had been about a breakthrough treatment that would change it all for FL patients. That would always be ideal. But if that can't happen, and our best option to to find ways to live with the disease, then something like this works for me, too.

I'll keep reading and (I hope) finding times to share what I've learned with you. We're already moving toward the post-ASH write-ups of which research presentations generated the most excitement. I'll share those, too, when I see them.