A reminder about transformation (though, if you're a Follicular Lymphoma patient, it's probably always in the back of your mind): Sometimes the nice, slow-growing Follicular Lymphoma turns into a less-good, faster-growing type of NHL, typically Diffuse Large B Cell Lymphoma, though occasionally something else equally nasty. Follicular Lymphoma is, according to the specialist I saw after I was diagnosed, "genetically unstable." It can change into something else.
Transformation is the worst nightmare of many Follicular Lymphoma patients, including me. It's more treatable the earlier it is detected, and we always wonder if that lump that popped up, or that weird cough, or that warm sweaty night is a sign of transformation. The fear gets less intense over time, but it's always there, at least a little bit.
Studies of the frequency of transformation are kind of inconsistent; I've seen statistics that show that anywhere from 15% to 50% of Follicular Lymphoma patients will eventually transform. I've also seen studies that show that show that transformation is virtually unheard of after 15 years, and others that refute that. So while I'm excited about what the Journal of Clinical Oncology article has to say, I'm also trying not to go overboard with my enthusiasm.
The article is called "Rates and Outcomes of Follicular Lymphoma Transformation in the Immunochemotherapy Era: A Report From the University of Iowa/Mayo Clinic Specialized Program of Research Excellence Molecular Epidemiology Resource." Researchers from Iowa and Mayo looked at 631 patients (a pretty good number) who were newly diagnosed with Follicular Lymphoma. They observed them over time (a median of 5 years, with some observed for a little over 9 years), and they compared the rate of transformation to the overall survival rate.
They found some good things:
- The transformation rate after 5 years was 10.7%. That's the lowest I've ever seen in a study.
- They found that an increase in LDH (lactate dehydrogenase), a blood marker, was a signal that transformation was possible. This seems pretty standard; I've been reading about LDH levels since I was diagnosed.
- The transformation rate was was highest in patients who were "initially observed" (14.4%) and lowest in patients who initially received Rituxin (3.2%). I assume the "initially observed" means those who watched and waited; it's not defined in the abstract I'm linking to. That said, 14.4% is still relatively low among the numbers I have seen -- up to 50%, as I said above.
- The median overall survival after transformation was 50 months -- again, a pretty good number. However, survival was better in patients who had transformed more than 18 months after their initial Follicular Lymphoma diagnosis (66% overall survival at 5 years) than those diagnosed sooner than 18 months (22%).
- Their conclusion is very positive, however: In the Rituxan Era, transformation rates seem to be dropping, and survival chances are improving -- overall survival of transformed patients is on par with those who have not transformed. they speculate that initial treatment (that is, choosing Rituxan right away) may help (again, this is the first time I've seen any suggestion that initial treatment choice has any effect on transformation).
Enough of that. For now, let's take it for what it is -- another reason for hope.
2 comments:
thank you for this post! it calms me even further, youre right, fear becomes less intense over time, thats why i dont read as much as i can anymore everyday like i used to when my husband was newly diagnosed, but of course, its important to update from time to time, but FL is still lurking at the back of our minds, what worries me now is the result of this study about rate of transformation is lowest for patients who are initially treated with R therapy, my husband is on w and w now - Jeanne
Jeanne, I understand your fears, as someone who watched and waited for 2 years. But I'm comforted by the fact that even the "big" watch and wait numbers are still lower than anything I had seen before. And I think we're probably moving closer to understanding, on a molecular level, why we transform. I have hope that, someday, it might not be quite so unpredictable.
In the meantime, I hope you can keep staying positive. And I hope that small lurking fear is just barely enough to keep you vigilant.
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