Editor’s note: The purpose of this article is to inform patients of an option they could discuss with their health care team. It is not a recommendation to stop treatment.
Stopping a Bruton tyrosine kinase inhibitor (BTKi) because of adverse or intolerable side effects doesn’t always mean you’ll need another treatment right away. In fact, according to newer research, some people with Chronic Lymphocytic Leukemia (CLL) may be able to safely enjoy months, or even years, without treatment before another therapy is necessary.
Since every person’s situation is unique, these findings indicate that a period of monitoring without treatment is a possibility you can discuss with your healthcare team.
BTKi medicines have transformed the treatment of CLL and Small Lymphocytic Lymphoma (SLL). Like all medications, however, they can cause side effects that some people find difficult to tolerate. These may include digestive problems, joint pain, bleeding, high blood pressure or heart rhythm changes. Until now, there has been limited information about what happens after patients stop a BTKi because of these side effects. Do they need to begin another treatment immediately, or is it safe to take a break while being closely monitored?
Researchers at The Ohio State University reviewed the medical records of 145 people with CLL who stopped taking a BTKi because of adverse or intolerable side effects. They found that many patients were able to remain off treatment for a considerable period before their disease progressed andanother treatment was needed.
Some of the key findings included:
- Half of the patients’ CLL remained under control for 21 months or longer after stopping treatment before showing signs of progression.
- Half of the patients did not need to start another treatment for 24 months or longer after discontinuing their BTKi.
- Patients who had been taking a BTKi for two years or longer before stopping generally remained in remission longer than those who stopped earlier.
- Patients who had received fewer previous treatments also tended to stay in remission longer.
These findings suggest that, for some patients whose CLL is well controlledwhen they stop a BTKi because of adverse or intolerable side effects, careful monitoring may be an appropriate option rather than immediately starting another treatment. This approach may allow patients to recover from troublesome side effects and enjoy a period without ongoing therapy while continuing to have their CLL closely monitored. Regular follow-up remains essential so that treatment can begin at whatever point it becomes necessary.
It is important to remember that this was a retrospective study from a single treatment centre. It only reviewed patients who stopped their BTKi because of side effects. The results should not be interpreted as a recommendation for patients to stop a BTKi that is working well. Treatment decisions should always be individualized based on how well your CLL is controlled, your previous treatments, your overall health and your personal preferences.
If you are experiencing adverse or intolerable side effects from a BTKi, don’t stop treatment on your own. Take notes on the frequency and severity of your symptoms and talk with your healthcare team about them, as many side effects can be managed. If treatment does need to be discontinued, this research suggests that some patients may be able to safely enjoy a period of close monitoring before another treatment is needed. Together, you and your healthcare team can decide on the approach that best balances effective disease control with your quality of life.
More detailed information about this study can be found here.
For more information about CLL treatments and managing side effects, visit CLL Canada’s Treatment section in the Information and Resource Centre here.