Common treatment regimes
For people with Waldenstrom's macroglobulinaemia, the most common first-line treatments are combinations of drugs. These combinations are known as ‘regimens’.
Regimens are usually split into cycles. You’ll have the drugs at one point in the cycle, before having a period of not taking them. Because treatment can have side effects or be harsh on your body, cycles give your body time to recover. Cycles vary in length depending on what drugs you are taking, but usually last around 2-6 weeks. You’ll normally have multiple cycles as part of your treatment.
Treatment regimens used for WM
There are two regimens most commonly used to treat Waldenstrom's macroglobulinaemia: BR and DRC. Both these regimens have shown to effectively reduce the amount of cells that cause WM, helping people living with WM to go into remission and feel better. They’re also safe regimens to have had if you are offered a stem cell transplant later on.
Both these regimens are recommended as first-line treatment for WM patients.
Why not start treatment straightaway?When you’re first diagnosed with WM, being told you don’t need immediate treatment may surprise, or even worry, you. You might think that it must be better to kill the cancer cells before they can increase more. However active monitoring is a safe and recommended way to care for people with slow-growing cancers like WM. There isn’t any evidence to show that being treated earlier has any benefits. Treatment itself can have some harsh side effects, which can be long lasting. By putting you on active monitoring, your doctor is saving treatment for when it can have the maximum impact. If your doctor sees signs that your WM is worsening, they will discuss treatment options with you immediately. However, many people stay on active monitoring for years, meaning they can lead full lives without the side effects of needless treatment.
What happens on active monitoring?You’ll have regular check-ups with your healthcare team, where you’ll have blood tests and a chance to talk about how you’re feeling and any symptoms or concerns you have. Normally these are face-to-face at the hospital, but since the COVID-19 pandemic, many check-ups have moved to video call or telephone. This doesn’t affect how you are monitored, just the way you speak to your healthcare team. Your blood tests and symptoms will help your doctor understand how your WM is behaving, and whether it’s time to start treatment or not. The check-ups also mean your doctor can pick up on any other conditions, for example anaemia, and ensure you get the right treatment for this. It’s important to raise concerns or mention any symptoms, however minor, at your check-up as your healthcare team might want to investigate these further. When you’re first diagnosed, these check-ups may be more frequent – for example, every 3 months – but as time goes by and if your WM remains stable, the check-ups may become less frequent. Some people who have been on active monitoring for years might have one check-up a year.
Is active monitoring safe?Yes. It is the recommended way to care for people with WM that isn’t growing and who either don’t have symptoms or whose symptoms are mild.
Is one regimen better than the other?
The type of treatment you’re offered will be down to your individual circumstances, including your general health and symptoms.
There aren’t any trials that have directly compared BR and DRC. Researchers have looked at other data about the regimens and found evidence to suggest that BR may be more effective in the long term, meaning that your Waldenstrom's macroglobulinaemia could take longer to come back. In the study, people who receive BR and DRC had similar responses, meaning both regimens were effective in killing the cells responsible for WM.
BR is a more toxic treatment, meaning that can be harsh on the body and isn’t suitable for everyone. Sometimes the dose might need to be reduced or you may not have as many cycles as your doctor planned because of the treatment’s toxicity.
DRC is less toxic, and studies have shown that fewer people get serious side effects that affect their treatment and quality of life.