OK -- time to start looking at some ASH abstracts.
In the comments in my last post, Dan suggested I look at the abstract for a session called "Effect of Histologic Grade on Clinical Outcomes of Follicular Lymphoma: Prolonged Progression Free Survival of Grade 3 Follicular Lymphoma in the Rituximab Era." I had my eye on this one because a few people were discussing it in the support group I've been in for years. ( I rarely post anymore, but I check in every day. the link is on the right under "Sites I Like.")
There's a lot going on in this abstract.
The researchers are interested in Grade 3 Follicular Lymphoma, and how it compares to grades 1 and 2 in terms of outcomes. (I was diagnosed as grade 1, with some grade 2.) In general, a higher grade means the cells are expected to behave more aggressively. The grade is determined by how many large, aggressive cells are visible by a pathologist in a particular area. (See Lymphomation.org for more on this.)
The important thing is, higher grade = more aggressive type of FL. It's more complicated than that for lots of reasons; the Lymphomation link gets into some of that.)
Grades 1 and 2 are usually considered less aggressive. Grade 3 used to be just one grade, but now it is usually broken into grade 3A (which behaves like grade 1 and 2) and grade 3B (which behaves more like Diffuse Large B Cell Lymphoma, a more aggressive type).
I'm going to assume that anyone reading this knows their (or their loved one's) grade.
The researchers wanted to know the difference in outcomes for the different grades. It seems reasonable to think that grade 3 would probably have worse outcomes, right? We've all been told about Transformation, and we're scared of it. Our slow-growing lymphoma becomes fast-growing, and that's bad. Aggressive must be bad. right?
Turns out that's not the case.
The researchers looked back at 227 patients who were diagnosed with FL between 2002 and 2014. 27% of the patients has grade 3 FL (either 3A or 3B) and the rest had grade 1 or 2.
The results: patients with grade 3 FL had a higher rate of Transformation (30%) than grade 1 and 2 (12%).
But there was no real difference in Overall Survival between the groups.
Grade 3 had a higher Progression Free Survival (61% after 5 years, versus 41% for grades 1 and 2).
The grade 3 group had a higher PFS when they limited it only to those who had immunochemotherapy with anthracycline (like R-CHOP). And when they isolated out the grade 3A patients, they had a higher PFS, too.
Here's their conclusion: "In this retrospective study of outcomes of follicular lymphoma in the
rituximab era, we observed that patients diagnosed with grade 3 FL have
better PFS than patients diagnosed with lower grade FL. This improved
outcome appears to be independent of the choice of initial therapy, with
an apparent plateau in the risk of relapse of patients diagnosed with
grade 3A FL, suggesting a subgroup of these subjects can receive front
line treatment with curative intent."
In other words, their data suggests that initial treatments for some patients with grade 3A might last long enough that it could be considered a cure.
Wow.
I'm guessing there's going to be some commentary from experts on this one in the next few weeks, as we get closer to ASH. It's surprising, but it makes sense.
DLBCL is an aggressive cancer, but it's curable, unlike most Follicular Lymphoma. So a grade that has more aggressive cells, and that behaves like an aggressive lymphoma, would more likely to be curable.
From a patient perspective, though, it brings up an interesting issue (one that was touched on the the support group discussion).
When it comes to Lymphoma, what's "good" and what's "bad"?
I remember, years ago, in that same support group, a discussion broke out about indolent and aggressive lymphomas. A lot of us have had people say to us, "Follicular Lymphoma? Well, at least you got the good one," or "If you're going to get one, this is the one to have."
Is it?
The folks in the support group had a debate over which was "better" -- the aggressive one that is potentially curable, or the indolent one that you might live for years with.
The aggressive one is scary. It grows quickly. You see the numbers getting larger by the week.
But R-CHOP or B-R or a stem cell transplant might cure it. That's good.
But it might not. That's bad.
An indolent lymphoma like Follicular might go years without needing treatment. That's good.
But those years aren't always happy years. Every bump or lump or lingering cold or tingling foot or swollen ankle or pulled side muscle means panic for a few days until it gets better or the oncologist will see you and check it out. That's not so great either. It takes a toll, emotionally and physically.
(As you know, I think FL is as much an emotional disease as a physical one.)
If I could go back 10 years and choose one over the other, which would I choose?
I honestly can't say.
The lesson, I guess, is that as patients, we can't assume a diagnosis, whatever it is, is better or worse than another. Our job is to understand what we have, educate ourselves enough to be clear about our options, and insist on an honest and open conversation with our doctor in which our voice is respected.
More ASH previews to come. I hope they aren't all this emotionally exhausting.....
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1 comment:
Thanks Bob!
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