If you’ve been diagnosed with follicular lymphoma, you might assume clinical trials are a last resort, something to consider only when every other option has been exhausted. It’s one of the most common misconceptions in cancer care, and in follicular lymphoma specifically, it can mean missing out on opportunities that are genuinely relevant to you right now.
Follicular lymphoma is managed very differently depending on where you are in your journey. Some people are newly diagnosed and weighing up whether to start treatment at all. Others are on watch and wait, feeling well but monitored closely. Some are mid-treatment, others are in remission. There are trials designed for all of these situations.
Since the 1990’s using combinations of chemo-immunotherapy has been the standard first treatment for FL patients. However, in recent years we have seen new classes of drugs like bispecific antibodies, CAR-T, checkpoint inhibitors and immunomodulatory drugs approved for relapsed FL (when FL comes back again) in different combinations.
Some research into these new treatments has shown promising results including some that had fewer side effects and some that seem to give a longer remission for some people. Now researchers are asking the question, “if we used this as the first treatment, would patients do better?” But we’ll only know this for certain with the hard evidence that comes from doing a clinical trial.
One of the things that makes follicular lymphoma unique is that doing nothing immediately is sometimes the right medical choice. But “watch and wait” isn’t a dead end for trial participation – it’s actually an active area of research. Studies have investigated whether treating earlier produces better long-term outcomes than the traditional delayed approach. If you’re currently being monitored, a trial could be relevant to you even though you’re not yet on any treatment.
The earlier in your journey you explore trial options, the more doors are open. Some trials are only available to patients who haven’t yet received certain treatments. Once you’ve had specific therapies, you may no longer be eligible for studies designed for earlier-stage patients – not because your situation is too complex, but simply because the research question requires a particular starting point. This isn’t a reason to panic or rush into anything. It’s a reason to ask the question early.
One of the studies the FLF is currently funding under the “Research United to CURE FL” program is an example of a clinical trial for previously untreated patients. In this study, Dr Armand and Dr Merryman are testing the effectiveness of bringing a treatment which is currently used in FL patients who have relapsed at least twice – the bispecific antibody epcoritamab – and testing whether it will be beneficial for those receiving their first therapy. This approach could lead to treatment regimens that avoid chemotherapy, which would have a huge impact on patients’ quality of life and level of toxicities.
You don’t have to be running out of options to have a conversation about trials. The next time you see your care team, it’s worth simply asking: “Are there any trials I might be eligible for at this stage?”. You’re not committing to anything, you’re just making sure you have the full picture.
In follicular lymphoma, clinical trials aren’t the end of the road. For many people, they’re part of the journey from the very start.
Sign up for our upcoming webinar ‘What no-one tells you about clinical trials and why it matters for your care’ on Tuesday 26th May 2026.
Explore more blog articles in our ‘busting the myths about clinical trials’ series.
