Predicting Transformation

This work is about a month old, but it deals with an important topic: Transformation.

As most of you know, Follicular Lymphoma is (as a doctor once told me) "genetically unstable," and can transform from a slow-growing cancer into an aggressive one. Based on my conversations with other FL patients, Transformation is probably one of our biggest fears. Slow-growing FL is something a lot of us can learn to live with. Fast-growing FL is a whole different thing, with lower survival rates and bigger questions to answer.

One of the scariest things about Transformation is that it is unpredictable. Researchers still haven't found any reliable biomarkers -- something in the cancer cells that can signal that Transformation is probably going to happen before it does.

The latest attempt to find some way to predict Transformation comes from the Spanish Lymphoma Oncology Group. They published a piece in Hematological Oncology about a month ago called "Transformed Follicular Lymphoma in the Rituximab Era: A Report from the Spanish Lymphoma Oncology Group."

The article describes their research in attempting to find ways to predict which patients will transform and which won't.

There's some  very interesting stuff in the article, but it's important to give a reminder: Predictions are not set in stone. They are good guesses based on evidence, and they don't always come true. I predicted a bad year for my Boston Red Sox last year, based on theri weak bullpen. My prediction was wrong. It works for cancer, too; don't read this as predicting that you will definitely transform because of some factors. 

The study looked at 975 patients from Spain who were diagnosed with Follicular Lymphoma between 1990 and 2016. They found that 64 of those patients transformed. The transformation rate within 5 years was 7.3%. 

That's low. In the last 11+ years, I've seen transformation rates as high as 50%. Most of the studies I've seen from the last few years puts the rate at about 10 to 15%. The researchers here say that it's usually given at about 10%. Whatever number it is, 7.3% is on the low side.

As for when transformation took place, the median time was 24months. So half of patients who transformed did so within 2 years of being diagnosed, and half after 2 years. About 30% of them transformed within the first year. And this is interesting: there were no cases of anyone transforming after 14 years. (I find that interesting because I'm in my 12th year after diagnosis. I'd seen somewhere, a while ago, that there were no transformations after 15 years. Happy to have that extra year.....)

So what kind of predictions could they make? Well:

• Patients with elevated LDH levels were more likely to transform.
• Patients with Intermediate or High FLIPI scores were more likely to transform.
• Patients with B symptoms were more likely to transform.
• Patients who watched and waited, or who had treatment that didn't include Rituxan or an anthracycline-based treatment (like CHOP or Bendamustine) more more likely to transform.

STOP. Before we get into any of that, let me remind you again: "more likely to tranform" does NOT mean that it is going to happen.

OK. Let's move on.

LDH (Lactate dehydrogenase) are very common in blood tests for FL patients. It's a way of measuring cell damage, and if it goes up, it's a sign that FL is getting more aggressive. It's also potentially a sign that you went to the gym before you had a blood test, so don't do that. This one is not a surprise. Elevated LDH is usually something that concerns an oncologist, but it's not an answer in itself.

FLIPI (Follicular Lymphoma International Prognostic Index) is controversial. It measures a few different factors (age, LDH level, stage of disease, number of sites on the body with active lymph nodes, and hemoglobin levels) and gives you a score from 1 to 5. In this study, anything over a 2 is a potential predictor. It's not a great predictor of anything on its own. Read more about it here, at Lymphomation.org.

(As I'm writing this, I took an online quiz that very helpfully told me I am an Intermediate Risk, and that the 10 year Overall Survival for people like me is 50%. That's an awful quiz. Don't take it if you come across it. FLIPI is an outdated measurement, and attempts to refine it are still controversial.)

B symptoms are physical signs that an FL is aggressive, so this one isn't a surprise, either. They include things like fever and chills, night sweats that are so bad you have to change the sheets, unexplained fatigue, unexplained weight loss, and sometimes itchiness. They are important because you'll notice them, rather than the doctor noticing something in bloodwork or on a scan.

Finally, there are those patients who watched and waited (which is a good chunk of us, including me) or didn't have Rituxan or anthracyclene-based treatments. Once again, these are trends, not answers.

I'm not trying to dismiss this study and say that any of those factors don't matter. But as a patient, I know what it means to read something and assume the worst. I just want to make clear that transformation is a serious thing, but predictors don't mean your fate is sealed.

I look at myself as an example: I did have elevated LDH once, which concerned my oncologist. He re-tested, and it was back down. Something other than aggressive cancer was the cause. My FLIPI score is a 2. I'm an intermediate. I watched and waited, so I'm in that group that has a higher risk of transformation.

But I haven't transformed. It's still something that concerns me, for sure. I take those predictors as things to watch out for, not as guarantees.

And to be honest, they are already things that I watch out for. Sometimes I wake up really warm and sweaty. My first thought is to think about it being a B symptom. It hasn't ever been -- my occasional sweatiness isn't the sheet-soaking kind. And I always get a little tense before a blood test, worried about LDH levels. And I've learned to ignore my FLIPI score and not wory about what an online quiz has to say about my survival.

As I read this, we still don't have any answers about who will transform. We know who might be more likely to, but that's not the same thing at all.

So if you're new to all of this, my advice is to be vigilant. Changes in your body might signal something is happening, and the earlier you can catch those things, the better. But don't live in fear. There's so much that we can't predict. Don't fill your head with things that might be there (but that have a 7.3% chance of actually being there).

In the meantime, educate yourself and do what you can to stay healthy. And hope for more and better research that brings us closer to accurate predictions and better quality of life.