What symptoms could indicate a relapse.
So things to be aware of if you're in a remission and are on a treatment-free interval to look out for, obviously recurrence of lymph nodes. So having lumps or bumps in your armpits, your neck, your groin can be an indication that the disease might be recurring.
Probably one of the most common adverse effects of having CLL recurs fatigue. So just being on the lookout for a drop in your energy level, inability to do the same amount of work or exercise that you've previously been able to do is something that should prompt a call to your oncologist.
And then there's a rare complication that can happen with CLL. It's not usually the first sign of recurrence, but it can be. It's something called a Richter's transformation. And this is when the cold turns into a more aggressive lymphoma. Again, it's a really rare but not never kind of event. And there you would look out for things like drenching night sweats. So you're waking up and having to change your pajama top or your sheets, weight loss that you're not intending. So you're not trying to lose weight, but the weight is falling off anyway.
If you get a lymph node that's rapidly enlarging and not going away again, that would be an alarm signal. Any of those symptoms should prompt a very quick call to your oncologist to get in and be evaluated.
The main thing that we look at is what the level of CLL is in the blood. There's a concept called minimal residual disease, and this is basically using very sensitive tests to see what the level of CLL is and if it can be detected. Typically we're doing this in the blood now, not bone marrow, but in clinical trials they've done both. It isn't standard of care yet. This is still being studied in clinical trials, but in some patients, we are learning about the rate that this CLL rises when a patient is off treatment.
We're still, as of 2023, starting treatment again when patients meet those initial IW CLL level criteria. Basically, the disease is causing a true problem again. But there are also clinical trials looking at intervening at an earlier time point.
In terms of side effects, a big one that is common in CLL patients without treatment, but we think may be affected by treatment, is things like secondary cancers. So non-CLL-related cancers, including skin cancers, colon cancer, for example, and other cancers. And so that's being tracked in the clinical trial data.
So nothing has really changed yet in the way we follow or observe patients, but we're learning more and more information.