Treatment when myeloma comes back (relapses)

When myeloma comes back it is called a relapse. You will need more treatment. During the course of the disease you might have several relapses.

Treatment aims to control the myeloma so it isn’t active and you don’t have symptoms. It also aims to improve your quality of life and help you live longer. When there's no sign of active myeloma in your body, this is called a remission.

This page is about treatment when your myeloma comes back.

Deciding about treatment for myeloma that has come back

When you relapse, your treatment plan depends on:

• how long your myeloma has been in remission
• the treatment you had before
• how well the treatments you have had worked
• your general health and fitness
• your personal wishes

Your doctor will discuss your options with you. They will tell you about the different treatment side effects. They will also discuss what each treatment involves. For example, how long you have it and how often you will need to go to the hospital. 

The treatment you have, and when you have it, will also depend on which drugs are available on the NHS where you live. In England, the National Institute for Health and Care Excellence (NICE) decides which drugs and treatments are available on the NHS. Wales and Northern Ireland generally follow NICE decisions but can also issue their own guidance. The Scottish Medicines Consortium (SMC) advises NHS Scotland.

What treatment will I have for myeloma that has come back?

Like your first treatment, you usually have a combination of

• targeted cancer drugs
• steroids
• possibly chemotherapy

Some people have another stem cell transplant.

The second lot of treatment you have is called second line treatment. And then the next treatment is called third line treatment, and so on.

How does treatment work?

Targeted cancer drugs

Cancer cells have changes in their genes (DNA) that make them different from normal cells. These changes mean that they behave differently. Cancer cells can grow faster than normal cells and sometimes spread. Targeted cancer drugs work by ‘targeting’ these differences that a cancer cell has. They work in different ways. For example, they can:

• stop cancer cells from dividing and growing
• encourage the immune system to attack cancer cells
• stop cancers from growing blood vessels

Chemotherapy

Chemotherapy uses anticancer (cytotoxic) drugs to destroy cancer cells. The drugs circulate around the body in the bloodstream.

Steroids

Steroids are naturally made by our bodies in small amounts. They help to control many functions including the immune system, reducing inflammation and blood pressure.

First relapse

The first time your myeloma comes back it is called a first relapse.

You might have the same combination of drugs you had as your first treatment if your myeloma has been in remission for longer than 18 months. But it is more likely that you will get another combination of drugs.

At first relapse you might have one of the following treatments:

• bortezomib and dexamethasone
• daratumumab, bortezomib and dexamethasone
• lenalidomide and dexamethasone 
• carfilzomib and dexamethasone
• carfilzomib, lenalidomide and dexamethasone
• stem cell transplant

After first relapse

When myeloma comes back again, it is called a second relapse, third relapse, and so on.

You might have one of the following treatments:

• ixazomib, lenalidomide and dexamethasone
• daratumumab
• isatuximab, pomalidomide and dexamethasone
• panobinostat, bortezomib and dexamethasone
• pomalidomide and dexamethasone
• lenalidomide and dexamethasone

You might have other drugs as part of a clinical trial if you have already had 2 or more treatments.

How you have treatment

Most people have treatment as an outpatient. This is unless there is another reason to be in hospital. This might include an infection, severe bone damage or severe kidney damage.

Treatment can be:

• tablets alone
• tablets together with an injection under the skin
• an injection into the vein as a drip (intravenously)

Most treatments mean that you go to the hospital once a week. You are usually at the hospital for about an hour if you're having just an injection under the skin.

You have treatment in cycles or blocks. Each cycle usually lasts for between 21 and 35 days. You have some drugs every day and others weekly. After each cycle of treatment, your team will check your side effects. They will also check how well treatment is working.

Most people have between 4 and 6 cycles of treatment. But some treatments carry on until they stop working, such as lenalidomide and daratumumab.

Other treatments to prevent problems

You might have other treatments to treat symptoms of myeloma. Or to prevent problems caused by the myeloma.

Other treatments you might have for myeloma include:

• bisphosphonates
• radiotherapy
• supportive treatments such as antibiotics or blood products

Bisphosphonates

Myeloma can damage your bones which can cause pain and fractures. To try to prevent this your doctor will offer you a medicine called a bisphosphonate. Bisphosphonates are drugs that help to treat some types of cancer that cause bone damage.

The most common bisphosphonates are pamidronate and zoledronic acid (Zometa). You have them into the vein as a drip (intravenously) every 4 weeks.

Radiotherapy

Radiotherapy uses high energy waves similar to x-rays to kill cancer cells.

Radiotherapy aims to kill cancer cells in the bone. This can help to reduce pain and slow down the bone damage. This includes the bones of the spine. These bones protect the spine. Damage to the spinal bones can press on your spinal cord and cause pain and other changes.

Treatment to prevent or control problems

Myeloma and its treatment can cause problems. Supportive treatments can help to either prevent or control these problems. Supportive treatments include:

• preventing and treating infections
• preventing blood clots
• blood products
• pain management
• plasmapheresis to remove excess protein from the blood

Follow up and monitoring

You will have regular follow up. How often you see your specialist depends on your situation. You need to see your doctor regularly, maybe weekly or monthly, if you are having treatment.

You will usually have blood and urine tests at each visit. This is to check whether the myeloma is active. You might also need x-rays or scans (such as CT, PET or MRI) if you have new bone pain. 

Your doctor examines you at each appointment. They ask about how you are feeling. They also ask about symptoms or side effects, and if you are worried about anything.

Let your team know if you are worried or notice any new symptoms between appointments.

Coping with relapse

Myeloma can be difficult to cope with. Knowing that it is going to come back at some point but not knowing when is especially difficult. The time between remission and relapse varies from person to person. Some people have months and others have years. Living with uncertainty is hard. And when it does come back it can feel very difficult even when you have known it will happen.

The type of support people need also varies. Finding what works for you is important. Talking to family and friends helps many people. There is also help and support available from specialist nurses, counsellors and support groups.