Response to TreatMent

During your treatment you’re medical team will assess how the cancer is responding to the alongside any side effects you may have.

Measuring How Well TreatMent is Working

Your doctor will use tests—like blood tests and scans—along with your symptoms to check how well treatment is working. This is called your response to treatment. It helps your doctor decide whether you need more treatment or can return to active monitoring.

While Waldenstrom’s macroglobulinaemia can’t be cured, treatment can put it into remission, meaning symptoms are eliminated completely. Remission can last months or even years before the abnormal WM cells build up to a point where you need treatment again.

Common Phrases You'll Hear

There are a few ways doctors check how well treatment is working—both right after treatment and in the long term. Here are some terms you might hear:

Depth of response – Describes how much the WM has been affected by treatment. You might hear terms like complete or partial response.
Progression-free survival (PFS) – How long someone lives without their WM getting worse. Some treatments don’t get rid of all the WM cells but can keep it stable for a long time. For some people with WM, this preferable to other treatments that might kill more abnormal cells but make them very ill in the process.
Time to next treatment – How long a treatment lasts before you need another one.
Overall survival (OS) – How long people live after treatment. For example, “5-year survival” means how many people are still alive five years after treatment.

Understanding the Jargon

Doctors and researchers often use terms to describe how well treatment is working. These terms are common in clinical trials but you might hear them even if you’re not in one. They help show how much your WM has responded, but they don’t tell the whole story. Some treatments may not lead to a “complete response” but can still be very effective.

Try not to worry too much about exact numbers. For example, someone with a 49% drop in IgM might be classed as having a “minor response,” while a 51% drop counts as “partial response” – even though there’s barely any real difference.

Response Terms used in Clinical Trials

Can sometimes be called ‘No Evidence of Disease’ (NED)
Blood tests show no sign of abnormal IgM
Your levels of IgM are normal
If you had swelling in the lymph nodes or spleen, this has gone
Bone marrow biopsy results are normal

Abnormal IgM proteins show up in your blood tests
Your levels of IgM are at least 90% lower than they were at the start of treatment
If you had swelling in the lymph nodes or spleen, this has gone
You have no new signs or symptoms of Waldenstrom’s macroglobulinaemia

Abnormal IgM proteins show up in your blood tests
Your levels of IgM have been reduced by at least 50% but no more than 90% from the start of treatment
If you had swelling in your lymph nodes or spleen, this may still be present but reduced
You have no new signs or symptoms of Waldenstrom’s macroglobulinaemia

Abnormal IgM proteins show up in your blood tests
Your levels of IgM have been reduced by at least 25% but no greater than 50% from the start of treatment
You have no new signs or symptoms of Waldenstrom’s macroglobulinaemia

Abnormal IgM proteins show up in your blood tests
Your levels of IgM have been reduced by less than 25%, or haven’t increased by more than 25% from the start of treatment
Any swelling you had in your lymph nodes or spleen hasn’t reduced but it hasn’t progressed (become more swollen) either
You have no new signs or symptoms of Waldenstrom’s macroglobulinaemia

Your levels of IgM have increased by 25% or more from their lowest point
Your signs and symptoms have progressed (become worse)