Monitoring myeloma

Doctors closely monitor myeloma. The tests you have and how often you have them depend on your situation. You might have regular appointments and tests to:

• monitor myeloma without symptoms (smouldering myeloma)
• see how well your myeloma is responding to treatment
• monitor you after treatment to check if your myeloma is active again and you need more treatment

Tests might include:

• blood tests and urine tests
• scans or x-rays
• bone marrow tests

Monitoring smouldering myeloma

Smouldering myeloma means you have abnormal cells in your bone marrow, or abnormal protein in your urine or blood. But you don't have symptoms or signs of any tissue or organ damage. You don't usually need treatment.

About 50 out of 100 people (50%) with smouldering myeloma develop symptoms and need treatment within the first 5 years. But after 5 years the risk decreases. A few people never develop symptoms or need treatment. 

Tests

You have regular tests to monitor smouldering myeloma including:

• blood and urine tests for paraprotein and free light chains
• blood tests to check how well your kidneys are working
• blood tests to check your calcium and red blood cells
• scans

You might have a bone marrow test if your tests show your smouldering myeloma might be developing into active myeloma.

How often you have tests depends on how long you have had smouldering myeloma. And how stable your test results are. You might have tests every 3 months for the first 5 years. This becomes less often if your test results are stable.

Let your doctor or nurse know if you develop any new symptoms between appointments. Symptoms to look out for include:

• pain
• feeling very tired (fatigue)
• losing weight
• regular infections

Starting treatment

You don't usually have treatment. You start treatment if tests show your smouldering myeloma is developing into active myeloma.

But your doctor might suggest you have treatment as part of a clinical trial in certain situations. Some research has shown that people with a higher risk of progression can benefit from treatment. More research is needed about this, and doctors do not routinely offer treatment for smouldering myeloma.

Coping with smouldering myeloma
It can be very unsettling to find out something is wrong, but to not start any treatment. You might find the uncertainty difficult to cope with. Smouldering myeloma is also quite rare and you might feel quite isolated. 

There are other types of cancer where you don't have treatment straight away. Doctors monitor these closely with regular tests and check ups. They call this 'watch and wait'. You might find it helpful reading our general page of information about watch and wait. 

Monitoring myeloma response during your treatment

You have regular tests during your myeloma treatment. These include tests to check how your myeloma is responding to the treatment. You usually have:

• paraprotein blood tests
• free light chain assay blood tests
• full blood count
• blood tests to check any other complications such as kidney or bone damage 

At certain points during your treatment, you might also have:

• scans of any areas of bone damage
• a bone marrow test to confirm your response to treatment

How often do you have tests during treatment?

You usually have some tests at least every month during your treatment. You often have these before each treatment cycle. 

You will have tests before and after a stem cell transplant . This usually includes a bone marrow test.

How do doctors describe your treatment response?

Your doctor might use different terms to describe how well your myeloma is responding to treatment. Your response depends on the level of paraproteins in your blood and urine. You might also have a bone marrow test to confirm your response.

You might hear the doctors use some of the following terms to describe your treatment response:

Complete remission means your blood and urine tests don't show any paraproteins. And your bone marrow contains less than 5 in 100 (5%) plasma cells. And all soft tissue plasmacytomas have disappeared.

Partial response means there is a large fall in the number of paraproteins in your blood and urine. And the number of plasma cells in your bone marrow is lower than it was.

Stable disease means you have not had a response to treatment. But your myeloma has not got worse (progressed).

Progressive disease means there has been an increase in the number of paraproteins in your blood or urine. The level of plasma cells in your bone marrow is more than 10 in 100 (10%). You might have a new plasmacytoma, or increased calcium due to your myeloma. 

Minimal residual disease (MRD) is when there is still a small number of myeloma cells left in your bone marrow. To check for this, doctors test a sample of cells from your bone marrow. It is a very sensitive test and can see myeloma cells even if other tests show the myeloma has gone away. This is a very new test for myeloma and not widely used. 

Monitoring myeloma after treatment

The aim of treatment is to put your myeloma into remission. Remission means:

• there are no signs of myeloma in your blood or bone marrow
• you have no other symptoms of myeloma

You might continue on treatment when you are in remission. This is called maintenance treatment. It aims to keep you in remission for as long as possible.

You continue to have regular tests when you are in remission. These are similar to the tests you have during treatment. You also have clinic appointments and your doctor will examine you and ask you about your symptoms. How often you have clinic appointments and tests depends on:

• how long you have been in remission
• what treatment you had or are having
• whether your myeloma has low risk or high risk gene changes
• how your myeloma is affecting you - for example, how well your kidneys are working
• your age and general health

To start with, you might have tests and clinic visits every 2 to 3 months. As time passes, if you have had a long remission, your tests and appointments might become a little less often.  But you still might see your doctor every 4 to 6 months.

For most types of myeloma you usually only need blood and urine tests.  But there is a rare type of myeloma called non secretory myeloma. This doesn't make abnormal paraproteins. So you can't have blood or urine tests to monitor paraprotein levels. You might have more regular bone marrow tests or scans instead.

What are the signs and symptoms of relapse?

Relapse means your myeloma has come back. Or it has become active again after a period of being in remission or having stable disease.  

Signs of relapse include:

• an increase in paraprotein or free light chain levels 
• myeloma symptoms coming back

Your doctor looks at the results of several paraprotein or free light chain tests, rather than a single result. They are looking for a trend of higher levels over a period of time. So, a one off high level does not necessarily mean you have relapsed.

You might have an increase in levels but no symptoms of myeloma. Doctors call this a biochemical relapse.

You might also have symptoms such as:

• low red blood cells (anaemia)
• increase in calcium (hypercalcaemia)
• bone pain
• kidney problems

If you have symptoms, doctors call this a clinical relapse. You will have extra tests to check your kidney function and calcium levels. You might also have scans if you have bone pain. 

When do you start treatment again if you relapse?

You usually start treatment straight away.

But you might not have treatment immediately if you have raised paraprotein levels without any signs or symptoms. Your doctor monitors you closely with regular clinic visits and tests. They call this watch and wait.

Your feelings

It can be helpful to write down any questions you might have for your doctor or specialist nurse before your appointments. You can also list any side effects or new symptoms you may have had. This helps you not to forget to ask about things you may have been worried about while you were at home.

It may help to take a friend or relative with you to the appointment. They can help support you and take notes to help you remember what your doctor or specialist nurse says during your appointment. 

Many people find their check ups quite worrying. It can help to tell someone close to you how you are feeling. Sharing your worries can mean they don't seem so overwhelming. Many people find it helpful to have counselling during cancer treatment.