Around one in seven people (14%) have no symptoms at the time they are diagnosed with myeloma. If you do have symptoms, the most common one is back pain which is more severe and lasts longer than normal back pain.
- Blood cancer
- Childhood leukaemia
- Acute lymphoblastic leukaemia (ALL)
- Acute myeloid leukaemia (AML)
- Acute promyelocytic leukaemia (APL)
- Chronic lymphocytic leukaemia (CLL)
- Chronic myeloid leukaemia (CML)
- Chronic myelomonocytic leukaemia (CMML)
- Hairy cell leukaemia (HCL)
- Large granular lymphocytic leukaemia (LGLL)
- Plasma cell leukaemia (PCL)
- T-cell acute lymphoblastic leukaemia (T-ALL)
- Other conditions related to blood cancer
Myeloma symptoms and diagnosis
Myeloma damages bone, bone marrow 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 (lack of red blood cells) or Bone damage.
Too much calcium in the blood can lead to:
- feeling sick (nausea)
- low appetite
- difficulty pooing (constipation)
- needing to wee more often
- feeling thirsty or being dehydrated
- not having as much energy as usual
- feeling confused or dazed.
Kidney damage can lead to:
- extreme tiredness (fatigue)
- itchy skin
- feeling sick (nausea)
- fluid retention that can make you short of breath or make your ankles swell.
Anaemia can lead to:
Some people also have symptoms linked to their bones, such as:
- bone pain
- bone damage as shown on X-rays – this may be thinning or fracturing of your bone in a few or many areas.
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
Because your immune system won’t be working well, 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 weeing or not weeing at all
- pain that gets worse very quickly.
Signs of pressure on the spine
Bone damage can cause pressure on your spine, which could lead to some of these symptoms:
- 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
- weeing or pooing uncontrollably, or having trouble going to the loo at all
- weakness or loss of feeling, usually in your legs, starting in the feet and moving upwards.
It’s a good idea to share this information about new symptoms with your friends and family, so they can get medical help if you become unwell.
Tests and diagnosis
Your healthcare team will run tests to decide if you have MGUS, smouldering myeloma or symptomatic myeloma. If you have symptomatic myeloma you will begin treatment straight away.
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, including plasma cells.
Most people 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 a related condition called plasma cell leukaemia. If this happens your doctor will talk about what this means for you.
An FBC will also check whether you have anaemia – a low level of haemoglobin (Hb) which is found in red blood cells. This is very common in myeloma and can make you feel tired and short of breath.
You might be sent for an FBC by your GP as part of a routine check-up. Other people might have one when they’re in hospital for something else.
You’ll have this test before diagnosis and throughout your treatment because an FBC can measure how your condition is responding to 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.
You may also have these tests to confirm your diagnosis and help make treatment decisions:
Serum calcium test
This blood test checks that there’s not too much calcium being released into your blood because of myeloma-related damage to your bones.
Serum and urine electrophoresis
This test looks at the amount and the type of paraprotein present in your blood and urine. It’s an important test which helps find out the type of myeloma you have and measures 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.
Serum free light chain assay
This test is done to confirm a diagnosis of free light chain myeloma. You may have it if no paraprotein − or only a small amount − is found in your blood or urine. This sensitive test can detect even very small amounts of light chain proteins present.
Immunofixation or immunoglobulin typing assay
This test defines the 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, for some people with myeloma only light chains can be detected, 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 people with more active myeloma, because of a higher amount of paraprotein in the blood.
Urea and electrolytes test
This is a blood test to check how well your kidneys are working, and to see if there is any damage to your kidneys which may be caused by myeloma. It will help your doctors to calculate the doses of drugs you need. It can also show if you’re lacking fluid (dehydrated).
You’ll usually have your kidneys checked every time you have an appointment at the hospital.
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.
You might have some 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 have to wait for the results. For emotional support and information, contact our Support Services Team. To connect with others who are going through similar experiences, join our online forum.
Plasma viscosity test
This test is done to measure how thick the plasma is in the blood. It can show how active the myeloma is because thicker plasma is associated with more paraprotein in the blood.
Bone marrow biopsy
If there’s paraprotein in your blood or urine, a biopsy will usually be taken from the bone marrow to confirm your diagnosis. It’s then studied under a microscope to see if there are any myeloma cells in it. Find out more about bone marrow biopsies.
FISH and other genetic 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 (something that runs in families).
Understanding the exact changes in your myeloma cells can help doctors to diagnose your illness, decide how likely it is that your condition will respond to standard treatment, and monitor how well you respond to treatment. A sample from a bone marrow biopsy will be sent for FISH (fluorescence in situ hybridisation) testing. This test looks for gene changes in myeloma cells. Genetic tests that are even more sensitive are being introduced to give better information to guide treatment.
B2M and albumin levels
You'll also have a test to measure the levels of two proteins in the blood: albumin and B2 microglobulin or B2M (sometimes written as ß2M). B2M is a protein found on the surface of the myeloma cells. In myeloma, albumin levels can be low and B2M levels can be raised.
Staging the myeloma
Based on your B2M and albumin levels, the results of FISH and other genetic testing, and the level of a substance called lactate dehydrogenase (LDH) in your blood, doctors will decide if the myeloma is stage one (I), two (II) or three (III). This will give clearer information about your outlook.
You may have a scan (CT, MRI or PET) to look for signs of myeloma in the bone marrow and check whether there is any evidence of bone damage.
After your diagnosis
Your healthcare team
Remember to tell other healthcare professionals you see – like your dentist or optician – about your diagnosis and any medication you’re taking. They may need to check with your specialist or GP before giving you some types of treatment.
Talking about your diagnosis
Many people find it helpful to talk to someone who’s had the same diagnosis and treatment, or contact a support organisation. You could consider joining our online community, or contact our Support Services Team.
Take some time to think about how much information you want, when you want it, and how you want it to be given to you. Read our information on finding out more about your condition.
It’s entirely up to you who you tell about your illness, but people often find it helpful to keep their loved ones informed. It may also be a good idea to tell someone at work about your diagnosis. See our tips on telling others about blood cancer.