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.