Saturday, February 25, 2012

Transformation Article

I have learned to be really careful about how I title posts. I can't just say "Transformation," just in case somebody gets the wrong idea and thinks I'm having problems. Hence, the title of this post.

Transformation is, of course, the greatest fear of any Follicular NHL patient. During Transformation, our (typically) slow-growing, indolent lymphoma undergoes a genetic change, and turns into a fast-growing, aggressive lymphoma (typically DLBCL, Diffuse Large B-Cell Lymphoma). DLBCL is curable, often with R-CHOP chemotherapy, or a Stem Cell Transplant, but chances are much better when it is discovered early. And that's the fear -- how will we know if it's transformed?

("You'll know," is what I'm told. Night sweats, fevers, chills, unexplained weight loss, nodes popping up all over the place. Still, you never know, you know?)

On top of it all, it's hard to tell just how common Transformation is. I've read anywhere from 30% to 50% of fNHL patients will transform at some point. There's a pretty big difference between saying 1/3 and saying 1/2 of patients will transform. But I also accept that it's hard to measure these things.

The point is, for lots of reasons, Transformation is a scary thing, and it's always hovering over our heads.

Last week, an article was published in the British Journal of Haematology called "Incidence, Risk Factors, and Outcome of Histological Transfomation in Follicular Lymphoma."  Unfortunately, I can only get access to the abstract of the article, not the full thing, but even the summary has some very interesting information.

The researchers looked at 281 fNHL patients from 1979 to 2007. They found that 37 of them transformed -- that's 13%, a nice low number. It was 15% after 10 years, and 26% after 14 years. Less happy numbers, but still better than 50%, certainly. After 14 years, there's a plateau, something I've read elsewhere, too. In other words, if you haven't transformed after 15 years, it ain't gonna happen.

More fascinating facts: patients with bulky disease (very large nodes) or extra-nodal disease (that is, lymphoma in the bone marrow or spleen, or some other organ) had a "significantly higher risk" of transforming, as did patients diagnosed before 1990.

Also, patients who watched-and-waited had a lower risk of transformation than those who had Rituxan and chemo right away.

Some of these things can be explained. Patients who watch and wait, for example, had a less aggressive form to begin with, so it makes sense that they would be less likely to transform than those who had an aggressive enough lymphoma to need chemo right away. Same with those who had bulky or extra-nodal lymphoma.

Not sure about the pre-1990 folks. No explanation that I can come up for that one. (If it's an 80's thing, it must be related to Kajagoogoo somehow.)

Of course, this is all about statistics, not individual patients. So while I fit a whole bunch of categories that would suggest I am less likely than others to transform, there's no guarantee that I won't. As far as I know, there's no way of testing cells to determine which patients will definitely transform and which won't (though there is some genetic research that's going on in that area), so it's all just guessing. And watching.

So, the upshot is, I can at least take some brief comfort in the article. It would great to see the whole thing, because I could use some explanation for some other factors. But I'll take what I can get, anyway, and continue to keep my eyes open for any changes.

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