Ask the Nurse: Relapse

Myeloma is a currently incurable but highly treatable cancer, which means that for most people, even after successful treatment and periods of remission, the myeloma will come back. This is known as a relapse.

Living with the uncertainty of when a relapse might happen, what your treatment options might be, and how it will impact your life can be difficult, but your healthcare team is experienced at managing relapses and are there to support you. There are many effective treatments that may be available and other sources of support if you need it.

In this month’s blog, we answer some of the questions you ask our Myeloma Infoline about relapse. If you would like information specifically about first relapse, you can read our Treatment at first relapse blog.

Why does myeloma relapse?

Current treatments are not able to kill all the myeloma cells in a person’s bone marrow. This means some myeloma cells will always be left after successful treatment. These cells will eventually multiply, causing the myeloma to become more active again.

When will I relapse?

It is impossible to know exactly when a patient will relapse. Some patients relapse a few weeks or months after completing their treatment; others may have many years of remission or plateau (where the myeloma is under control and not causing any complications or symptoms). This is why monitoring is so important.

Although relapse can’t be accurately predicted, there are some factors which can give an idea of how quickly someone might relapse. These include how well you responded to treatment and the individual nature of your myeloma.

How many times do myeloma patients relapse?

The number of relapses varies from person to person. Some people may have very few relapses with long periods of remission and others could have many relapses with short periods of remission. The number of relapses a patient will have largely depends on the individual nature of the myeloma as this determines how quickly it grows and how well it responds to treatment over time.

My paraprotein level has gone up. Does this mean I am relapsing?

One result showing an increase in paraprotein levels doesn’t necessarily mean you are relapsing. Paraprotein and/or light chain levels are very individual to each patient and can sometimes fluctuate up and down without causing too much concern. Your healthcare team will be looking at the trends over time rather than a single result. They will also consider whether you’re experiencing any new or worsening symptoms such as an increase in bone pain or decreasing energy levels due to anaemia. If you notice any changes in your symptoms or how you’re feeling, do tell your healthcare team.

If paraprotein and free light chain levels rise slowly without other changes to blood test results, and when there are no new or worsening symptoms, this is called a biochemical relapse. Treatment may not necessarily start immediately if there are no symptoms or complications such as bone pain or kidney damage.

What is the treatment for relapsed myeloma?

There are different treatment options available at each relapse depending on your individual circumstances. The treatment you’re offered will take into account things like:

• How many relapses you’ve had.
• How well previous treatments worked.
• What side effects you experienced previously.
• Your overall health.
• What treatments are currently available.

Your healthcare team will discuss your options with you so that you can decide together on the next steps. You can visit our Treatment for relapsed myeloma webpage to learn more about what might be available.

Is there any support for patients worried about relapse?

Living with the uncertainty of relapse can be difficult to cope with. Many people living with myeloma find that talking to someone can help. This might be family and friends, your healthcare team, one of our Myeloma Information Specialists or a counsellor.

You might find it helpful to hear from other people living with myeloma too. You can talk to others at a Support Group, on our Discussion Forum or through our Peer Buddy service.

Our Digital Infoday Session: Living with uncertainty contains some useful tips. If you are interested in talking to a counsellor, ask your healthcare team if they can refer you. A counsellor can support you with managing anxiety and living well despite the uncertainty.

You can find more information about relapse in our Infopack for relapsed and/or refractory myeloma patients or watch our video Coping with a myeloma relapse.

If you have any further questions or need support, contact us through the Myeloma Infoline (0800 980 3332 (UK) or use our Ask the Nurse email service.