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This period of remission can last for months, years or even decades. During this time, you’ll be on active monitoring, where you’ll regularly see your healthcare team for check-ups.
There may come a time when your team notice that those abnormal IgM proteins are increasing. This is called ‘relapse’. You healthcare team may notice the signs before you start to feel unwell yourself.
You won’t necessarily need to start treatment straight away. Your healthcare team will continue to monitor your symptoms and take blood tests as they decide how best to support you
Remember to keep an eye on your symptoms. If you think they are returning, or have developed new symptoms, contact your healthcare team straight away.
The treatment you’re offered when Waldenstrom’s macroglobulinaemia comes back is called ‘second-line’ treatment (or ‘third-line’ if you are having treatment for a third time). Your options will depend on a range of factors including your age, what treatment you’ve had before and any WM-related conditions you may have.
Types of second-line treatment available to people with Waldenstrom’s macroglobulinaemia in the UK are:
Chemoimmunotherapy
Chemotherapy is a type of drug, or combination of drugs, that kills cancer cells. When treating WM, it is often combined with a type of drug known as a monoclonal antibody, such as Rituximab. The most common combinations of chemotherapy that have proven to be effective in treating WM are known as DRC (which contains the drugs dexamethasone, rituximab and cyclophosphamide) and BR (bendamustine and rituximab).
BTK inhibitors
BTK inhibitors are a fairly new type of drug that target cancer cells to kill them or stop them from growing. In England and Wales, the BTK inhibitor zanubrutinib is available to some WM patients as a second-line treatment. In Scotland, zanubrutinib and another drug ibrutinib are available to WM patients.
Autologous Stem Cell transplant
This option is rarely offered. It is a procedure that replaces damaged cells in your body with healthy cells. It is an intensive treatment that is only offered as a second- or third-line treatment. A stem cell transplant requires a long stay in hospital of at least a few weeks, and carries a risk of severe side effects. Recovery time can be a year. This means that it is only suitable for a very few WM patients.
Your doctor should always look into available clinical trials. Clinical trials have strict eligibility criteria, meaning that not everyone can join them.
It can be very difficult when your doctor tells you that there are no treatment options left. You may be offered support to help relieve your symptoms. Your check-ups may also be closer together than normal. When the time is right, you may also be offered palliative support.
