Indolent Lymphomas: An Interview & a Lesson

Targeted Oncology has an interview with Dr. Andrew Zelenetz, a lymphoma specialist at Sloan-Kettering in New York. 

It's a short interview on indolent lymphomas (including Follicular Lymphoma), mostly reviewing the general issues associated with indolent NHL (the first question is about the differences between indolent and aggressive lymphomas). There are one or two kind of new of interesting things in there -- it's main point doesn't seem to be to introduce new stuff.

I think, though, that the interview is especially useful as a reminder that we need to read carefully -- very carefully -- or we will drive ourselves crazy.

A had a conversation with a friend recently about another mutual friend with cancer. My friend had gone online, and was feeling very down about our mutual friend's prognosis. The conversation brought me down a little. I had to remind myself of the excellent advice that Dr. C, the lymphoma specialist that I saw soon after I was diagnosed, had given me: "Everything that you read online is already out of date." I won't get specifically into what my friend had found online, but I think it could easily fall into the category of "might very well be out of date." At the very least, he was probably misinterpreting what he had read.

The quest for knowledge can be a dangerous thing sometimes. We have to remember to read past that first entry in the Google results list.

As for the interview, this is what I mean:

Dr. Zelenetz, asked about transformation, says, "In Follicular Lymphoma, about 40 to 50% of patients will undergo transformation in 15 to 18 years."

I think that's kind of a daunting statistic. Chances are 50/50 that you'll transform -- that would be my first, panicky thought.

But it's not really that simple. For one thing, there's still lots of uncertainty over just how often transformation takes place. More recent  studies (like, from a few weeks ago) suggest that the percentage might be a whole lot lower. Plus, while Dr. Zelenetz offers some depressing survival statistics, those might be out of date, too. And we won't get into the genetic-level research being done that's trying to find some kind of marker for transformation being more or less likely. But who, reading this, will go straight for the worst news?

Asked about prognosis, he says, "There are Follicular Lymphoma patients will die of their disease 2 years after diagnosis, and patients who have never received treatment 25 years after diagnosis." Unfortunately true.

There are FL patients who will die of their disease 2 years after diagnosis, and patients who have never received a treatment 25 years after diagnosis. - See more at: http://www.targetedonc.com/publications/special-reports/2013/b-cell-issue1/Q-A-Zelenetz-Addressing-the-Challenges-of-Indolent-Non-Hodgkin-Lymphoma#sthash.l4aLJrKQ.dpuf

In FL, about 40% to 50% of patients will undergo transformation within 15 to 18 years, - See more at: http://www.targetedonc.com/publications/special-reports/2013/b-cell-issue1/Q-A-Zelenetz-Addressing-the-Challenges-of-Indolent-Non-Hodgkin-Lymphoma#sthash.l4aLJrKQ.dpuf

Indolent lymphoma can progress or "transform" to aggressive lymphoma. In FL, about 40% to 50% of patients will undergo transformation within 15 to 18 years - See more at: http://www.targetedonc.com/publications/special-reports/2013/b-cell-issue1/Q-A-Zelenetz-Addressing-the-Challenges-of-Indolent-Non-Hodgkin-Lymphoma#sthash.l4aLJrKQ.dpuf

 But, again, if the article gets seen by a newly diagnosed patient, which of those numbers will they focus on?

One good thing thjat comes out of this: Zelenetz says that the median survival for Follicular Lymphoma patients is 12 to 16 years. Woo hoo! Lots of places online give the old, pre-Rituxan figures of 8 to 10 years. So that's one inconsistency in our favor. But even that doesn't take into account some other studies that say a 40 year old FL patient might have a median survival rate of 20+ years.

You can see for yourself what he has to say about treatment options and about Rituxan maintenance. With these, too, he leaves out a lot.

Now, I'm not saying he doesn't know what he's talking about. Far from it. You don't get to Sloan-Kettering without knowing a little something about your specialty.

But the format of this interview doesn't allow for more than the most basic information in answering a question.

There's so much out there to read. And we too often read at a time when our emotions are running high. The lesson is, slow yourself down, find a trusted source of information (like a support group), ask your doctor when you have questions, and try like heck not to panic.