Ask the Nurse: Relapse

Myeloma is a treatable but incurable cancer. This means that for most patients, even after successful treatment, the myeloma will come back (relapse). Living with this uncertainty is difficult. As a result, a topic we often talk about on the Myeloma Infoline and Ask the Nurse email service, even during the COVID-19 pandemic, is relapse. So, in this month’s blog, we thought we would share some of the questions we get asked about relapse.

Why does myeloma relapse?

Unlike many cancers, myeloma does not exist as a lump or tumour. This means that myeloma is challenging to treat. It can’t be removed or be selectively treated. As a result, current treatments are unable to remove all traces of myeloma from the body. Consequently, the remaining cells grow over time and eventually the myeloma and its symptoms return.

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. This is why monitoring is necessary.

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

How many times do myeloma patients relapse?

The number of times myeloma patients’ relapse can vary. Some patients will have very few relapses with long periods of remission and others will have many relapses with short periods of remission. The number of relapses a patient will have largely depends on the individual nature of their myeloma as this determines how quickly the myeloma grows and how successfully it can be treated.

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

One result showing an increase in paraprotein levels doesn’t 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. So, your doctor will be looking at the trends over time rather than being guided by one reading alone. They will also be looking for any new or worsening symptoms and complications related to your myeloma, such as an increase in bone pain or decreasing energy levels due to anaemia.

Is there any support for patients worried about relapse?

Living with the uncertainty of relapse can be difficult to cope with. Many patients find talking to someone can help. This can be your family and friends, a doctor or nurse, another patient, one of our Myeloma Information Specialists or even a counsellor.

You might find joining a myeloma support group helps. Although support group meetings were postponed due the COVID-19 pandemic many groups are hosting virtual meetings. You can get in touch with your local support group through the Myeloma UK website.

If you are interested in talking to a counsellor, ask your healthcare team if they can refer you. A counsellor can give you techniques to help you with your anxiety so the uncertainty is easier to live with.

For more information about relapse you can download the “Infopack for relapsed and/or refractory myeloma patients” or watch our video “Coping with a myeloma relapse”

If at any time you have any questions about relapse or want to talk through your feelings, you can contact us on the Infoline (0800 980 3332 (UK) or 1800 937 773 (Ireland)) or through the Ask the Nurse email service.

Best Wishes
The Myeloma Information Specialist Team