Ask the Nurse: Treatment at first relapse

Myeloma is a treatable but incurable cancer, which means that for most people, even after successful treatment and periods of remission, the myeloma will come back. This is known as relapse. For many patients, relapses can be just as challenging as the initial diagnosis. In some ways, it may feel even harder knowing what’s ahead: hospital visits, tests and more treatment. Experiencing your first relapse can be especially challenging to come to terms with, revisiting the anxiety and uncertainty of diagnosis for the first time.

However, there are many effective treatment options available at first relapse. Whilst this can be reassuring, making treatment decisions can add stress to an already difficult time.

In this month’s blog, we answer some of the questions you ask our Myeloma Infoline about first relapse, the treatments available, and how to make treatment decisions.

How will I know if I am relapsing?

Your doctor will monitor you using blood tests and use the results to identify any relapse. It is important to note that an increase in paraprotein or light chain levels doesn’t necessarily mean that the myeloma is active.

Paraprotein and/or light chain levels are very individual and can fluctuate up and down, so your healthcare team will look for trends in the results and the presence of other symptoms or complications such as anaemia, new or increasing pain, fatigue or reduced kidney function, to confirm that a patient is relapsing.

If you experience any new or increasing myeloma symptoms, make sure to tell your healthcare team.

When should I start treatment?

There are no strict criteria for starting treatment at relapse and the timing of treatment might differ between patients. For example, people with high-risk myeloma which is harder to treat are more likely to start treatment promptly at the first signs of relapse.

In general, patients start treatment when their myeloma is considered active which is confirmed by blood test results, imaging tests and sometimes a bone marrow biopsy.

How will my myeloma be treated at first relapse?

The type of treatment offered will depend on your individual circumstances. It will depend on your previous treatment, any side effects experienced, the nature of your myeloma and your overall health. You and your healthcare team will discuss your options and decide what’s right for you together.

There are several treatments approved for use through the NHS at first relapse (second line). The treatments include:

• Belantamab mafodotin (Blenrep®), bortezomib (Velcade®) and dexamethasone.
• Bortezomib (Velcade®).
• Bortezomib (Velcade®), cyclophosphamide and dexamethasone.
• Carfilzomib (Krypolis®) and dexamethasone.
• Carfilzomib (Krypolis®), lenalidomide (Revlimid®) and dexamethasone.
• Daratumumab (Darzalex®), bortezomib (Velcade®), dexamethasone.
• Lenalidomide (Revlimid®) and dexamethasone.
• Selinexor (Nexpovio®), bortezomib (Velcade®) and dexamethasone.
• A second high-dose therapy and stem cell transplant procedure.

There may also be the option of joining a clinical trial, which can give you access to new and/or innovative treatments. You can read more in our Clinical trials and how treatments are developed Infoguide and find out about current clinical trials using our Myeloma Trial Finder.

Why am I being offered a different treatment when my previous treatment worked?

Most patients will get a new combination of drugs at each relapse because myeloma can become resistant to treatment. This is particularly true when the previous treatment has been given continuously until relapse.

To learn more about why this happens, you can watch our video Clonal evolution: the changing nature of myeloma.

Sometimes, patients will be retreated with a drug they had been given before (e.g. bortezomib). In these cases, the treatment may be combined with one or more drugs they haven’t had before.

How do I decide which treatment is best for me?

Choosing between treatments can be challenging, but there are lots of resources to help you make a decision.

Your healthcare team can guide you with which treatments are suitable for you and in some cases they may recommend a particular option.

Although effectiveness is often the most important factor when choosing a treatment, there is limited data directly comparing treatments, so you may also want to consider the treatment practicalities (e.g. frequency, method of administration and potential side effects) when deciding. You can find out more about individual drugs in our Treatment guides collection or contact our Myeloma Information Specialists for information or support.

It is important to remember that there is no right or wrong decision when it comes to choosing treatment. All of the treatment options have been approved for use and are considered effective. For more information you can read our Infopack for relapsed and/or refractory patients.

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.