Wednesday, June 29, 2022

ASCO: Factors Associated with Death in Lymphoma

One more review from the ASCO conference. I've been putting this one off. 

If you've been reading the blog for a while, you know that I don't like to talk much about death. (Who does, really? Especially among cancer patients?)

Still, I think it's important to talk about, in terms of Lymphoma, and the factors that might contribute to it that are related to Lymphoma. I've written a lot in the past about survival statistics and how to read them. They are usually expressions of Overall Survival -- that is, death by any cause. So if you read a statistic that says Follicular Lymphoma patients have a median survival rate of 15 years, it means that a study looked at how long a group of FL patients were alive after diagnosis. It doesn't look at how many patients died from Follicular Lymphoma. (It could have been a heart attack, a sky diving accident, whatever.) You can read more about all of that here.

But that opens up an important question -- are there factors related to Lymphoma that do cause patients' deaths? After all, it's pretty easy for me to avoid sky diving. Avoiding Lymphoma is a little tougher.

And so we return to ASCO, and the presentation "Factors associated with death from lymphoma in a single center study."

As I said, I've been putting off writing about, because it's not something I much like to think about. But I found this study kind of hopeful.

The study looked back at Lymphoma patients in the Veteran's Affairs Healthcare System who were diagnosed with Lymphoma between January 2008 and December 2021. (And let me remind you that I was diagnosed with FL in January 2008, which makes this whole examination of death even less pleasant.) As the researchers point out, patients in the VA system often have additional health problems (comorbidities) and poor performance status (more on that in a second), so they were especially interested in how factors like lymphoma stage, subtype, and performance status affected death.

First, a word about performance status. This is a measure of how well a cancer patient (not just a lymphoma patient) functions daily. It's a 0 to 4 scale, with 0 being the best -- a patient functions "normally" and they are able to go about their daily activities with no help. A 4 is the worst, meaning completely unable to take care of themselves. You can read the full scale here, but in this study, "good" status is 0-2 and "poor" status in 3 or 4. 

The patients in the study were divided by Lymphoma subtype, with 85 patients having an aggressive Lymphoma like DLBCL, and 149 having a slow-growing Lymphoma like FL. 

So what did they find?

In looking at patients getting treated for the first time, none of these factors predicted patients having severe side effects -- performance status, disease type, stage, or age. In other words, it didn't matter if you were 25 years old, stage 2 FL patient who runs marathons or an 85 year old stage 4 DLBCL patient who can't get out of a chair without help. Statistically, none of those factors mattered in how you would react to treatment. Your chances of severe side effects were the same.

As far as death goes, patients with poor performance status (score of 3 or 4) or "advancing age" (which they do not define) did not have a statistically higher risk of dying from Lymphoma. Getting diagnosed later in life doesn't mean you're more likely to die from the disease, and neither does having the kinds of comorbidites that make you need some help in day-to-day life.

But a couple of factors were relevant -- more advanced stage and aggressive subtype. This doesn't surprise me -- patients with more widespread Lymphoma and more aggressive Lymphoma have always been considered at greater risk. 

So what does all of this mean (and why do I think it's positive news)?

Interestingly, despite having a title that focuses on "death," the authors' conclusion is ore focused on the part of the study that dealt with side effects ("AEs," or "Adverse Effects"): "The fact that performance status may not predict the development of AEs with first line therapy for lymphoid malignancies is relevant to clinical decision making. However, our findings need confirmation in larger prospective studies."

For what it's worth (as someone who isn't an oncologist or a cancer researcher), I agree -- knowing that age or performance status isn't going to affect side effects, that could be a consideration in deciding on which treatments to consider. Maybe, for some patients, being a little more aggressive would be OK.

But as a cancer patient, I'm more focused on the "death" part of all of this. 

For me, the positive is that, statistically, having an indolent, slower-growing cancer does not put us at higher risk of death. This goes back to what I've written about survival statistics, in a way. The median Overall Survival for FL is something like 18 to 20 years (it's hard to measure exactly). That means that, for many of us, we will live a "normal" life span -- the same as the general population. This study would seem to confirm that.

However, it also confirms that some FL patients will have a harder time with the disease. Subtype is associated with greater risk of dying, and many FL patients fall into the more aggressive subtype of Lymphoma. I think this would probably include FL patients who are grade 3b, and POD24 patients

But even that has a potentially positive side. This also confirms what Lymphoma experts have been saying for a while -- research needs to focus on these patients who have more aggressive versions of what is usually a slower-growing cancer. And it does seem like more resources are going into identifying them early on and finding treatments that will be effective for them. That's not a huge positive, I know, but it's a start.

The big lesson in all of this, to me, is to try not to focus too much on statistics that identify you as being part of a group that might put you at a higher risk. Statistics don't tell us anything about us as individuals.The best thing you can do is work closely with your oncologist to decide the best course of action for you and your situation. 

And in the meantime, to live the life that you want to live. 

That's probably it for reviewing ASCO presentations for this year (though I may post some videos of experts talking about sessions, as they become available in the next few weeks). I do have a couple of other exciting research reports to talk about, though. Stay tuned.



Monday, June 27, 2022

Vote for Me: Social Health Awards

Hello all.

As I mentioned  last week, I have been nominated again this year for the Social Health Awards

This is a new version of the WEGO Health Awards. There are some differences this year, besides the new name. The biggest difference is that there are some new categories, including the two that I have been nominated for:

Revolutionary Researcher: The Revolutionary Researcher category aims to celebrate the patients and caregivers who refuse to let medical jargon and data slow them down! The winner of this category stays up-to-date on the latest research, treatments, and clinical trials. This patient leader has a knack for transforming complex information into layman terms for the greater community to act on.

Creative Contributor: There are so many avenues when it comes to patient advocacy. The Creative Contributor category recognizes the individuals taking a creative approach to raising awareness. Think about patient leaders transforming their advocacy into clothing, cards, jewelry shops, comic creation and more! This category celebrates those bringing advocacy to the marketplace.

I'm honored to be nominated for both.

The other big change in this year's awards is that there is a much shorter time period for endorsements -- June 27 to July 1. So if you would like to endorse me (vote for me), you can do so at this link.

The three people with the most endorsements in each category will become finalists for that award. A panel of judges will then go through everyone's profiles and decide on three more finalists. 

Please be aware that if you are interested in endorsing me, you will be asked to give an email address (to make sure you only vote one time). If you'd rather not give out your email, that's fine -- privacy is important. If you do decide to give me an endorsement, thank you!

 I have a new ASCO post coming in a couple of days.