Response to treatment
They’ll use different tests to look for signs of your Waldenstrom's macroglobulinaemia, like blood tests to detect certain proteins and scans to search for other signs of the disease. By looking at the results of these tests and talking to you about your symptoms, your doctor can tell how well the treatment is working. This is known as your ‘response’ to treatment and will help your doctor to decide if you need further treatment or if you can go back to active monitoring.
Waldenstrom's macroglobulinaemia cannot be cured, but treatment can put the disease into remission – where the signs and symptoms of the disease are gone or reduced. These periods of remission can last for months or even years before the abnormal WM cells build up enough to give you WM symptoms. You may hear both ‘remission’ and ‘response’ used.
Measuring response to treatment
There are different ways to measure people’s response to various treatments. They measure how treatment affects someone’s Waldenstrom's macroglobulinaemia immediately, but also in the longer term.
You may come across the following terms when reading or talking about a treatment’s effectiveness:
Depth of response: a way for researchers to quickly measure how your Waldenstrom's macroglobulinaemia has been affected during and immediately after treatment. You might hear terms like ‘complete response’, or ‘partial response’. These terms are sometimes used outside of clinical trials. We go into these phrases in more detail below.
Progression free survival (PFS): how long a person lives with their Waldenstrom's macroglobulinaemia without an increase in IgM levels or their symptoms becoming worse. Some drugs might not kill all the WM cells in your body but lead to long periods where your WM doesn’t get worse. For some people with WM, this is a preferable option to other treatments that might kill more abnormal cells but make them very ill in the process.
Time to next treatment: this is a helpful measurement as it can show how long-lasting the treatment. It is the time between one treatment and the next.
Overall survival (OS): how long people live on average after their treatment. You may hear this in terms of years e.g. ‘5 year survival’. This refers to how many people are alive at least 5 years after treatment.
Depth of response
In clinical trials, researchers use terms to describe how people have responded to treatment. This helps them to quickly measure the effectiveness of a treatment, and is sometimes used to predict how long the remission is likely to last for, especially in clinical trials. You may come across these terms even if you’re not in a clinical trial. However, they don’t give the full picture – for example some treatments rarely lead to a complete response but remain very effective treatments.
Try not to put too much emphasis on the numbers talked about below. Outside of a clinical trial, the specific numbers carry less meaning – there is likely to be very little difference between someone whose IgM has decreased by 49% (minor response) compared to someone whose IgM has decreased by 51% (partial response) even though this would put them in a better response category.
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.