Myeloma symptoms and diagnosis

Updated 24 Oct 2017

There are some symptoms you might have before you’re diagnosed with myeloma and some symptoms you might have afterwards. Not everyone will have the same symptoms.

You’ll have a set of tests to confirm whether you have myeloma or not. If you’re diagnosed with myeloma, your healthcare team may then do further tests to ‘stage’ the cancer (see how much it’s developed).

It’s important that you understand your diagnosis – it might be a good idea to ask your consultant to write it down so you can use it if you’re looking for more information or support, or you need to tell other people about it.

Kaye speaks about her myeloma diagnosis and the treatment afterwards

Signs and symptoms

Before diagnosis

About three out of 10 patients with myeloma are diagnosed at a time when they have no symptoms. The most common symptom, if you do have any, is back pain which is more severe and lasts longer than normal back pain.

Myeloma can damage muscle, bone, and the kidneys. The symptoms linked to this are often described as ‘CRAB’ because they are due to too much calcium in the blood, renal (kidney) damage, anaemia or bone damage.

Too much calcium in the blood might lead to:

  • nausea (feeling sick)
  • low appetite
  • constipation
  • needing to pass urine more often
  • feeling thirsty or being dehydrated
  • not having as much energy as usual
  • feeling confused or dazed.

Renal (kidney) damage can lead to:

  • itchy skin
  • nausea (feeling sick)
  • impotence in men
  • fluid retention that can make you short of breath or cause your ankles to swell.

Anaemia can lead to:

  • tiredness
  • breathlessness
  • paleness.

Some patients also have symptoms linked to their bones, such as:

  • bone pain
  • bone damage shown on X-rays – this may be thinning or fracturing of your bone in a few or many areas.

After diagnosis

If you get any new symptoms after you’ve been diagnosed, or if you feel unwell, contact your hospital straight away, even if you’re not sure if the symptom is related to the myeloma. Your hospital team will tell you whether you need to see them or if you should see your GP instead.

Signs of infection

If you have myeloma, it’s likely that your immune system won’t be working well. Because of this, minor infections could become more serious. Symptoms of infection may be less obvious because of your illness or if you’re taking paracetamol-based medicines.

If you have any of the following symptoms, you should call your hospital:

  • cough or sore throat
  • raised temperature
  • confusion or agitated behaviour, especially if this comes on suddenly
  • rapidly becoming more ill
  • fast heartbeat and breathing
  • difficulty in passing urine or not producing urine
  • abruptly increasing pain.

Signs of pressure on the spine because of bone damage

  • central back pain, made worse if you move, cough or strain
  • a sudden change in a pain you’ve had for a long time
  • ‘crescendo’ pain (pain that becomes worse and then eases off)
  • pain that gets worse if you lie down or raise your legs
  • pain in either one or both legs, especially if it starts in your back and spreads to your legs
  • a tingling, ‘electrical’ feeling in your arms or body when you bend your head forwards
  • not being able to control your bowels or bladder
  • weakness or loss of feeling, usually in your legs, starting in the feet and moving upwards.

It’s a good idea to share the information on this page with your friends and family too, so they can get medical help if you become unwell.

If you get new symptoms after you’ve been diagnosed, or if you feel unwell, contact your hospital as soon as possible.

Tests and diagnosis

It’s important to know and understand your diagnosis. You could ask your team to write the details down, so you have it to hand.

Tests to diagnose myeloma

Here’s an overview of the tests you might have to confirm and stage the myeloma. These tests will define if you have asymptomatic, smouldering or symptomatic myeloma. If you have symptomatic myeloma you will begin treatment straight away. The tests listed below are all types of blood or urine tests.

Initial screening tests

Full blood count

A full blood count (FBC) is a simple blood test which measures the number of each type of cell in your blood: red cells, white cells and platelets. It also lets doctors look for plasma cells in your blood.

Most patients with myeloma don’t have plasma cells in their blood, but if they do appear outside the bone marrow it may change your diagnosis to plasma cell leukaemia. If this happens your doctor will talk to you about what this means for you.

You might be sent for this test by your GP as part of a routine check-up. Other patients might have one when they’re in hospital for something else.

You’ll have this test before diagnosis and throughout your treatment because the FBC can also measure how your condition is responding to the chemotherapy.

It’s worth staying aware of the results – this way you’ll know whether you’re responding well to treatment or if more needs to be done. It’s also very important to tell your healthcare team if you’ve experienced any new symptoms. They can then decide whether further testing or treatment is required.

Urea and electrolytes

This is a blood test to check how well your kidneys are working, which will help your doctors to calculate the doses of drugs you need. It can also show if you’re dehydrated. You’ll usually have your kidney function checked every time you have an appointment at the hospital.

Serum calcium

This blood test checks that there’s not too much calcium being released into your blood because of myeloma-related damage to your bones.

Liver function test

This is a blood test to check if your liver is working normally. Chemotherapy drugs are broken down in the liver so if the liver function test shows that your liver isn’t working properly, it may be necessary to adjust the dose of chemotherapy.

Serum and urine electrophoresis

This test looks at the amount and the type of paraprotein present. It’s an important test which can define the type of myeloma you have and measure how you’re responding to treatment. If you have paraprotein present but you don’t have any other signs of myeloma then you may have MGUS.

Immunoglobulin typing assay

Immunoglobulin typing will define which type of myeloma you have. Myeloma is classified according to the type of paraprotein your body is making, which may be IgG, IgA, IgM, IgD or IgE.

Although it’s rare, some patients with myeloma have only light chains present, not whole paraproteins. If there are only light chains, it’s known as free light chain myeloma. These light chains are known as either κ (kappa) or λ (lambda) type.

Erythrocyte sedimentation rate (ESR)

This test is used to determine how thick the blood is. Your doctor will take a blood sample to measure the rate at which the red blood cells settle at the bottom of a tube. This process should happen faster in patients with more active myeloma due to a higher amount of paraprotein in the blood.

Further tests

You might have some of these further tests to either confirm the diagnosis, or to see how much the myeloma has developed and how much it’s affecting your body.

These tests can also help you and your healthcare team decide which type of treatment would be best for you. For many people this can be an anxious time, especially if you need to wait for the results. You might like to get extra support from family and friends, your healthcare team or talk to other people who’ve been affected.

Free light chain assay – Freelite™

This test is done to confirm the diagnosis of light chain myeloma. You’ll have this test if no paraprotein is found in your blood or urine. This sensitive test can detect even very small amounts of light chain proteins present.

Plasma viscosity test

This test is done to measure how thick the plasma is in the blood. This can show how active the myeloma is because thicker plasma is associated with more paraprotein in the blood.

Skeletal survey

This is a series of X-rays looking at your skull, spine, pelvis and long bones to see if there’s any myeloma-related damage to your skeleton.

Bone marrow biopsy (aspirate and trephine)

If there’s paraprotein in your blood or urine, a biopsy will usually be taken from the bone marrow – normally from your hip bone – to confirm your diagnosis. It’s then studied under a microscope to see if there are any myeloma cells in it.

You don’t need to stay overnight in hospital for a bone marrow biopsy – you can have it as an outpatient using local anaesthetic or mild sedation. It’s usually quite quick but will be uncomfortable while the sample is being taken from the marrow; you can take painkillers if you need to.

Bone marrow aspirate

A special needle is inserted into the hip bone after local anaesthetic has been administered. A small sample of bone marrow is aspirated (removed) into a syringe and sent for analysis.

Bone marrow trephine

You’ll usually have a trephine biopsy at the same time. This is where a ‘core’ of bone and bone marrow from the hip bone is taken. This gives information about the structure of your bone marrow and the number and distribution of the different blood cell types – and cancer cells, if there are any there.

Cytogenetics and FISH

Your bone marrow sample is sent for cytogenics and FISH (flourescence in situ hybridisation) testing. All kinds of cancer, including blood cancer, involve changes in genes in the affected cells. This isn’t the same as an inherited genetic cause.

Understanding the exact changes in your myeloma cells can help doctors to diagnose your illness, to decide how likely it is that your condition will respond to standard treatment, and to help monitor how well you respond to treatment. The study of these changes is called cytogenetics. FISH testing is a more sophisticated test that can give additional genetic information.

β2M and albumin levels

The stage of a person’s cancer (how far it’s spread), can be measured against the amounts of two proteins in the blood called albumin and β2-microglobulin.

In myeloma, albumin levels can be low and β2M levels (a protein found on the surface of the abnormal cells) can be raised. Based on this, your doctor will take your blood sample and stage the myeloma from stages I to III:

  • Stage I Both albumin and β2M levels are normal or near normal.
  • Stage II Either albumin is low with normal β2M, or β2M is moderately raised.
  • Stage III β2M levels are much higher than normal, albumin is low.

Scans

You may have a scan if your doctor needs further clarification of your diagnosis.

CT or CAT scan

A CT scan is a type of X-ray that will show up any areas where the myeloma could be affecting your bones. The procedure won’t cause any pain. You’ll lie on a table that moves into a cylindrical tunnel while the pictures are taken. Your body is never completely enclosed and you’ll be able to talk to the person who takes and assesses the images (the radiographer) all the time. You might need to have a dye injected into one of your veins to help get a better image.

Magnetic resonance imaging (MRI) scan

This scan shows up soft tissues (non-bony parts) and uses radio waves rather than X-rays. It can help your team to find out if the myeloma is affecting your spine or spinal cord. You’ll be asked to lie on a table which will move you through the scanner. It isn’t painful but it can take up to an hour to complete and some people find it claustrophobic. The MRI machine is also noisy, so you may be given headphones so you can listen to music during the procedure. As with a CT scan, you might need to have a dye injected into one of your veins to get a better image.

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