With current therapies it isn’t possible to eradicate every abnormal cell from the body and your WM is likely to return at some point, when you will then receive more treatment. This means that you will be regularly followed up by your medical team, including your CNS, even during long periods of remission. This helps the medical team check to see if the WM has returned and plan the next steps in a timely way to help you maintain a high quality of life.
During follow up visits you will have blood tests, to check the level of IgM protein and your blood counts, to make sure that the WM is stable. If new symptoms develop – the same ones as at diagnosis or new ones – or if there is a rise in the IgM protein or a fall in blood counts, another bone marrow biopsy or CT scan will be advised to reassess the disease status.
If you experience new symptoms between appointments or are worried about your health, it is important to contact your medical team and bring forward your appointment.
You should have the details of your key worker, usually your CNS. Find out more about what a CNS is and the important role they play in your care here.
When WM returns
At some point your WM is likely to return, and can be treated again. The treatment you have will depend on your previous treatments, how well you tolerated them, how long it is since the last course of treatment, and your general state of health.
The same treatment can be used again if a year or more has passed since its initial use. If the WM relapses more quickly than this, your doctor may consider a different drug or a combination of drugs or even a stem cell transplant.
In a very small number of people WM can turn in to a faster-growing type of lymphoma. If this happens you will notice new symptoms and it would be detected by tests (such as a lymph node biopsy). This is called ‘transformation’ and, although it sounds worrying, it can be treated using drugs that are normally used for high-grade lymphomas.
Living well with WM
Stay in control of your WM
You may find it helpful to keep a record of your key test results. This means you can relate how you feel to what is happening to your blood chemistry. You can also monitor any changes over time. Talking to others with WM can also help – join our virtual support groups to meet people going through similar experiences.
Look after yourself
Living with a long-term illness can lead to stress and anxiety. Research shows that one in three people diagnosed with a cancer such as non-hodgkins lymphoma five years previously, say they experience anxiety or depression. We run regular Mindfulness sessions for the WM community to help learn how to identify and manage anxiety and stress. Find our next session.
Finding travel insurance is important to ensure you are covered for trips abroad, but you might find your previous provider won’t cover you after being diagnosed with WM. Our page on travel insurance has everything you need to know about finding the right cover for you, so you can enjoy your time away.
Read about travel insurance
Have questions? We’re here to help – call or email us for support and information