Multiple myeloma

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Multiple myeloma at a glance

Multiple myeloma is a blood cancer involving plasma cells, the cells that normally make infection-fighting proteins called antibodies. It usually affects several areas of bone marrow, the soft tissue inside bones that makes blood cells, rather than forming one removable lump. Treatment can control the abnormal cells, protect bones and kidneys, and allow long periods of good daily functioning.

For most people it is managed as a condition that may need different treatments over time. A good response is important, but it is not the same as a guarantee that myeloma cannot return.

The first decision is whether there is active myeloma that needs treatment or a related condition that needs monitoring. An abnormal protein result alone does not settle that question. The team combines blood and urine tests, marrow findings, imaging and evidence of organ damage. Some people need urgent treatment because kidney function, calcium levels or spinal stability are threatened; others have time to complete tests and discuss the options.

Symptoms and when to seek help

Persistent back or rib pain, fractures after a small injury, tiredness, repeated infections or worsening kidney function may lead to the diagnosis. High calcium can cause thirst, constipation, drowsiness and confusion. These symptoms have other causes too, so tests are needed rather than assuming that every ache is myeloma.

New back pain with leg weakness, altered sensation or problems controlling urine or stools is an emergency because the spinal cord may be compressed. A sudden fall in urine output, severe dehydration, confusion, breathlessness or a suspected fracture also needs urgent assessment. Do not wait for the next clinic appointment when these symptoms develop.

Your care team

Care usually involves a haematologist or haemato-oncologist, a doctor specialising in blood disorders and blood cancers, alongside specialist nurses and a pharmacist. Kidney, bone, radiotherapy, dental, rehabilitation and transplant specialists may join when needed. Ask who coordinates the overall plan and which number provides urgent advice. Early supportive treatment matters even before the final drug combination is chosen.

Making this information useful to you

A cancer diagnosis can arrive before you have had time to understand the tests. You do not need to learn every treatment name at once. Begin with the exact diagnosis, where the cancer is, and what the team recommends next. A relative or friend can join the appointment if you would find that helpful. Ask for an interpreter when language makes a discussion harder; important decisions should not depend on guessing unfamiliar words.

This guide explains possibilities, not a prescription for your situation. Your blood and tissue test results, scan findings, general health, previous treatment and priorities determine which possibilities apply. Two people with the same cancer name may appropriately receive different treatment. If a recommendation differs from something you have read, ask the team to explain the reason and the evidence behind it.

Keep a list of medicines, allergies and other health conditions, including non-prescription products, vitamins and herbal remedies. Tell the team about previous cancer treatment, pregnancy or breastfeeding, and anything that could affect attending appointments. Do not stop an established medicine without advice. Bring your questions in the order that matters most to you, so that the most important concern is discussed first.

Understand

Plasma cells, antibodies and M protein

Healthy plasma cells produce many different antibodies. Myeloma arises from one abnormal family of cells, often producing one antibody or part of an antibody in excess. This is called a monoclonal protein, paraprotein or M protein. Antibodies contain smaller protein parts called light chains. Excess light chains can sometimes damage the kidneys. Other protective antibodies may fall, increasing infection risk even when the total protein level is high.

Some myelomas mainly produce light chains; a small minority produce little measurable protein. Their monitoring relies more on free light chains, marrow assessment and imaging. The exact protein type helps select the right follow-up tests. A normal-looking result on one test does not exclude disease that is better measured another way.

MGUS, smouldering myeloma and active myeloma

Monoclonal gammopathy of undetermined significance, or MGUS, is a precursor condition rather than active myeloma. Most people with MGUS never develop myeloma, but appropriate monitoring is needed. Smouldering myeloma has more abnormal plasma cells or protein than MGUS, but no myeloma-related organ damage or other test finding that establishes active myeloma. Its risk of progression varies considerably.

Active myeloma may be diagnosed when the abnormal plasma cells cause high calcium, reduced kidney function, anaemia (too little oxygen-carrying haemoglobin in the blood) or damaged areas of bone. These features are often called CRAB: calcium, renal (kidney) impairment, anaemia and bone lesions. Certain test findings can also establish active disease before organ damage appears.

These findings include:

• At least 60% abnormal plasma cells in the marrow.
• A ratio of at least 100 between the involved light chain (the type made by the myeloma) and the other light-chain type, with the involved light chain at least 100 mg/L.
• More than one focal area of disease, each at least 5 mm, on magnetic resonance imaging (MRI), a scan using a magnetic field.

The specialist applies these criteria with the other diagnostic findings. A light-chain ratio affected by kidney disease is not a diagnosis by itself.

High-risk smouldering myeloma deserves a separate discussion. Monitoring remains appropriate for many people, while daratumumab can be considered for selected adults at high risk after confirming that active myeloma is absent. This is not a recommendation to treat everyone with MGUS or smouldering disease.

Related plasma-cell disorders

A solitary plasmacytoma is a localised collection of abnormal plasma cells and may be treated with radiotherapy after testing excludes wider myeloma. Light-chain (AL) amyloidosis involves abnormal light-chain protein deposits that can affect the heart, kidneys and other organs. Plasma-cell leukaemia is an uncommon, more aggressive presentation with abnormal plasma cells circulating in the blood. These conditions require their own specialist assessment; they should not be assumed to follow an ordinary myeloma pathway.

Why myeloma develops

Usually there is no single identifiable cause. Myeloma is not contagious, and a diagnosis does not mean that a person caused it through food, stress or an everyday activity. Age and some inherited or environmental factors affect risk, but genetic changes found in the myeloma cells usually developed during life. Family genetic counselling is considered when the clinical history suggests a particular inherited risk, not automatically for every patient.

Tests and diagnosis

Blood, urine and bone marrow tests

A blood count checks red cells, white cells and platelets. Kidney function, calcium, albumin and other blood chemistry help identify complications and establish a baseline. Protein electrophoresis separates blood proteins to look for an abnormal pattern. Immunofixation identifies its type, and serum free-light-chain testing measures the smaller antibody parts circulating in blood. Urine testing may also be needed, sometimes using a timed collection.

A bone marrow aspirate and biopsy establish the plasma-cell burden and allow chromosome testing. The aspirate collects liquid marrow and the biopsy takes a small core, usually from the back of the pelvis with local anaesthetic. Tell the team about blood thinners, allergies and previous difficulty with procedures. Ask when the main report and the genetic results will be available, because they may arrive separately.

Fluorescence in situ hybridisation, or FISH, uses fluorescent probes to look for genetic changes in plasma cells. Findings such as chromosome 17p loss, certain translocations (rearrangements of chromosome material) and chromosome 1 abnormalities can influence risk and treatment intensity. A result should be interpreted with the complete picture rather than described simply as a good or bad gene.

Imaging and bone health

Whole-body low-dose computed tomography (CT), positron emission tomography combined with CT (PET-CT) or MRI may be used to look for bone lesions and disease outside the marrow. The best test depends on the question, symptoms and local expertise. An ordinary bone-density scan assesses osteoporosis, a loss of bone strength, but cannot replace imaging for myeloma bone lesions. New focal pain may need targeted imaging even when the blood protein is improving.

If a vertebra, one of the bones in the spine, has collapsed, the team checks stability and whether nerves are threatened. Rehabilitation and exercise advice should take these findings into account. Avoid forceful spinal manipulation or heavy loading of a painful bone until it has been assessed.

Risk and response measurements

Myeloma risk systems combine blood markers, genetic findings and other features. They help choose treatment and explain likely patterns across groups; they do not predict an individual person's future exactly. Kidney dysfunction and infection also influence what is safe at the start of treatment.

Response is measured by changes in protein or light chains, blood counts, symptoms and, when needed, marrow or scans. Measurable residual disease, or MRD, testing can detect smaller amounts of myeloma than routine tests. An MRD-negative result is encouraging but does not prove cure or mean that maintenance should be stopped independently. The testing method, sample quality and timing matter.

Preparing for your appointment

If scans have been performed, bring a CD containing your scan images in Digital Imaging and Communications in Medicine (DICOM) format, the standard used for medical images, together with the software needed to view them, along with the written scan reports. Bring your biopsy report and ask whether the pathology slides or tissue blocks are needed for specialist review or additional tests. Keep originals safe and agree how borrowed material will be returned. Having the actual images allows the team to compare changes and plan treatment accurately.

A repeat test is sometimes needed because an earlier sample was too small, a scan did not cover the necessary area, or a new result will change treatment. Ask what question the test will answer, how it may affect the plan, and when you should expect the result. A result described as uncertain does not automatically mean the cancer is worse. Sometimes discussion between the scan specialist (radiologist), tissue specialist (pathologist) and treating team resolves the uncertainty without another procedure.

Before a scan or procedure, mention kidney problems, previous contrast reactions, implanted devices, diabetes medicines, blood-thinning medicines and the possibility of pregnancy. Follow the testing centre's instructions about food, drink and medicines. If you have not received those instructions, contact the centre rather than making changes yourself.

Planning your treatment

Choosing the first treatment

The team considers disease biology, kidney function, frailty, nerve symptoms, heart and lung health, and what you want treatment to make possible. Fitness for transplant is assessed individually and is not decided by age alone. A gentler schedule can be more effective in practice if it allows treatment to continue safely.

A plan usually includes initial combination treatment, consideration of stem-cell collection and autologous transplant for suitable people, and ongoing maintenance or continuous therapy. Supportive medicines are planned alongside cancer treatment. Ask which medicines treat the myeloma and which prevent infection, blood clots, bone damage or nausea.

Autologous transplant in context

An autologous transplant uses your own collected blood-forming stem cells after high-dose chemotherapy, commonly melphalan. The cells rescue blood production; they are not a donor immune treatment. It can deepen and prolong disease control but is not generally described as a cure for myeloma. A donor transplant is different and is not routine initial myeloma treatment.

Discuss collection early because earlier therapy can affect the process. Some people collect cells and delay transplant after considering their response and priorities. Others proceed soon after induction, the initial combination treatment. The team should explain the expected hospital or outpatient arrangements, infection precautions, recovery time and caregiver support.

Kidney protection and urgent stabilisation

Kidney impairment may require rapid myeloma control, careful fluids and adjustment of other medicines. Do not start anti-inflammatory painkillers or supplements without checking kidney safety. Dehydration, infection and high calcium can worsen function. Dialysis may be needed in severe cases, but the possibility of recovery depends on the cause and response; it cannot be promised in advance.

Questions to ask your care team

• What is the exact blood cancer type and risk category, and are any important results still pending?
• Is the aim to cure the cancer, reduce the chance of recurrence, control it, or relieve a particular symptom?
• What benefit do you expect from this option, and what are the reasonable alternatives for me?
• How will treatment affect everyday activities, fertility, sexual health and the things I most value?
• How will we know whether it is working, and when will we review the plan?
• Who should I contact between visits, including at night or over a weekend?

Clinical trials and newer treatments

A clinical trial can be worth considering at diagnosis or when treatment needs to change. Trials ask a defined question; some compare established treatments and others study a newer approach. Eligibility depends on the cancer, previous treatment, test results and health. Taking part is voluntary, and choosing not to participate does not remove your right to standard care. Ask about extra visits, possible randomisation (allocation to a treatment group by chance), travel, side effects and what happens when the study ends.

Newer treatments are considered using the clinical evidence, recognised guidelines and the exact cancer type, biomarkers (features found by laboratory tests) and previous treatment. Some options have less mature evidence than established treatments. Ask what is known, what remains uncertain and whether a clinical trial would be appropriate.

Your priorities and supportive care

Tell the team what you are hoping treatment will make possible: returning to work, caring for family, keeping independence, reducing pain or attending an important event. These priorities can influence a choice between reasonable options. If the likely benefit is small and the burden is substantial, discussing a less intensive approach is appropriate. Decisions can be revisited when your health or circumstances change.

Supportive and palliative care help with symptoms, sleep, mood, family concerns and planning. They can be provided alongside treatment intended to cure or control cancer. A referral does not mean that active treatment is ending. If the cancer cannot be cured, ask what treatments may help you live longer or more comfortably and how their burdens compare with their likely benefits.

Treatment options

Initial drug combinations

Many suitable patients receive medicines from several groups:

• Anti-CD38 antibodies, such as daratumumab or isatuximab, target the CD38 protein on myeloma cells.
• Proteasome inhibitors, such as bortezomib, block a cell process that breaks down unwanted proteins, helping kill myeloma cells.
• Immunomodulatory drugs, such as lenalidomide, affect immune activity and myeloma-cell survival.
• Dexamethasone is a steroid that helps treat myeloma as part of the combination. Daratumumab with bortezomib, lenalidomide and dexamethasone is an important option for newly diagnosed disease, including appropriately selected transplant-ineligible adults. Isatuximab-based combinations are another option in defined settings. The exact combination and schedule must match fitness, kidney function and treatment goals.

For people who need a less intensive approach, daratumumab with lenalidomide and dexamethasone or an adjusted alternative may be appropriate. A frailty assessment can lead to lower steroid exposure, fewer drugs or altered scheduling. Bortezomib-containing treatment is often useful when rapid control is needed, including myeloma-related kidney injury. These are treatment frameworks, not interchangeable recipes.

Bortezomib is usually given by injection; lenalidomide is taken orally; anti-CD38 antibodies can be given by infusion or under the skin depending on the formulation. Dexamethasone is a steroid with a specific schedule. Never take an extra dose because a symptom or protein result has changed.

Maintenance and continuous therapy

After transplant, lenalidomide maintenance is commonly used. Higher-risk disease may lead to a different or combined maintenance approach. For people not having transplant, treatment may continue with some medicines reduced or stopped after an initial phase. The aim is sustained control with manageable side effects.

Maintenance still requires blood counts, infection review and assessment of quality of life. Persistent fatigue, diarrhoea, low counts or nerve symptoms deserve attention. Dose adjustment does not automatically mean that treatment has failed. The balance between benefit and burden is reviewed over time.

Treatment when myeloma returns

Relapse may first appear as a blood-test change, or as new symptoms, bone lesions or organ injury. The urgency differs. The team considers which drugs the myeloma has resisted, how long earlier treatment worked, prior side effects and current fitness. Repeating a previously effective treatment can sometimes be reasonable after a long interval; changing drug classes may be more useful when resistance developed during therapy.

Options include combinations containing carfilzomib, pomalidomide, anti-CD38 antibodies, bortezomib, ixazomib, elotuzumab or selinexor in appropriate settings. The benefit and toxicity of the complete regimen matter more than whether one drug is described as new. A second autologous transplant may be discussed for selected people with a sufficiently durable earlier response.

Iberdomide with daratumumab given under the skin and dexamethasone is a newer option for adults previously treated with at least one line including a proteasome inhibitor and an immunomodulatory drug. Important issues include low blood counts, infection, clotting and severe harm to an unborn baby. Previous anti-CD38 exposure and resistance need careful review when selecting this combination. Its early approval was based on deep response results; longer-term benefit is still being confirmed.

CAR T-cell therapy and bispecific antibodies

Chimeric antigen receptor (CAR) T-cell treatment modifies a person's immune T cells in a laboratory, adding a receptor that helps them recognise myeloma. Ciltacabtagene autoleucel and idecabtagene vicleucel are options for defined previously treated populations; the required previous treatments differ. Referral may be useful before the disease becomes difficult to control because collection, manufacturing and planning take time. Treatment to hold the disease during that interval may be needed.

Bispecific antibodies bring T cells into contact with myeloma cells. Teclistamab, elranatamab and linvoseltamab target a protein called B-cell maturation antigen (BCMA); talquetamab targets G protein-coupled receptor class C group 5 member D (GPRC5D), a different protein on myeloma cells. Single-agent eligibility depends on previous treatment. Teclistamab with daratumumab given under the skin is also an option after at least one previous line that included a proteasome inhibitor and an immunomodulatory drug. Earlier use of a combination does not mean every bispecific can be used at the same point.

Bispecific antibodies usually start with smaller doses that increase in steps. CAR T-cell treatment follows a separate specialist collection and infusion pathway. Both need close early observation and infection prevention.

Cytokine release syndrome, an excessive inflammatory response from immune cells, can cause fever, low blood pressure and breathing difficulty. Neurological toxicity may cause confusion, altered speech, unusual sleepiness or seizures. Serious and prolonged infections can occur even after the early monitoring period. The team will provide a specific emergency plan and advice about staying near the treatment centre, driving and caregiver support.

Antibody-drug conjugates and local treatment

Belantamab mafodotin is an antibody-drug conjugate: an antibody linked to a cell-killing medicine. It is used in specified combinations when myeloma returns or has not responded adequately. Options include combination with bortezomib and dexamethasone, or with pomalidomide and dexamethasone after relevant previous therapy. It can damage the cornea, the clear front surface of the eye, and affect vision, so eye examinations and treatment pauses or dose changes are essential. Report blurred vision or eye discomfort promptly rather than waiting for the next routine visit.

Radiotherapy can relieve local pain or treat a threatening lesion. Orthopaedic or spinal procedures may stabilise damaged bones. These local treatments complement medicines that work throughout the body when myeloma is present throughout the marrow; they do not remove the need to assess the whole disease.

Managing side effects

Bones, nerves and dental care

Zoledronic acid or another bone-protective medicine, including denosumab in appropriate circumstances, may reduce skeletal complications. Kidney function, calcium and dental health affect selection. Arrange dental assessment where possible and tell your dentist about these medicines. Jaw problems are uncommon but important; report persistent jaw pain, exposed bone or a wound that is not healing. Calcium and vitamin D advice should be individualised, especially when calcium is high or kidneys are impaired.

Tingling, burning, numbness or difficulty fastening buttons can signal peripheral neuropathy, damage to nerves outside the brain and spinal cord. Early reporting may allow a change in bortezomib or another contributing medicine before symptoms become disabling. Falls prevention, footwear, physiotherapy and pain treatment can help. Do not assume that all nerve symptoms come from the drug; myeloma, diabetes and vitamin deficiencies may also contribute.

Infection, blood clots and transfusions

Antiviral prevention, vaccination planning and sometimes antibiotic or immunoglobulin support may be recommended according to treatment and infection history. Immunoglobulin replacement is not required for everyone with a low level. Anti-CD38 treatment can interfere with blood-bank testing, so the transfusion service should know before and during treatment, and blood-group and antibody testing before the first dose helps the blood bank prepare safely.

Lenalidomide, pomalidomide and some newer related medicines can increase clot risk, particularly with steroids or other drugs. The team chooses prevention according to individual risk. Do not start aspirin or an anticoagulant on your own, especially if platelets are low. Sudden chest pain, breathlessness or one swollen painful leg needs urgent assessment.

Steroids can disturb sleep, mood, blood sugar and muscle strength. A person with diabetes may need a temporary management plan. Report major mood changes or confusion. Follow the prescribed steroid schedule; stopping a prolonged course suddenly can be unsafe.

Keeping treatment manageable

Keep the team's contact details available and know where to go outside clinic hours. Report side effects early rather than waiting until the next appointment. A short record of symptoms, temperature, fluid intake and medicines can help the team decide what is needed. Do not change cancer medicine doses, restart a stopped treatment, or use leftover antibiotics without instructions. A planned delay or dose adjustment can be an important part of safe treatment.

If you receive treatment that can lower white blood cells, a temperature of 38°C (100.4°F) or higher needs urgent advice. Follow any lower threshold or additional instructions your team gives you. Chills, sudden weakness, confusion or feeling very unwell also need urgent assessment, even without a fever. Do not wait for a blood test appointment or try to hide the fever with medicine before speaking to the team.

Severe breathlessness, chest pain, a new seizure, sudden weakness, heavy bleeding or collapse require emergency care. New severe back pain with leg weakness, numbness around the bottom, or loss of bladder or bowel control also needs immediate assessment. Contact the nearest emergency service when necessary; a website contact form or routine messaging service is not an emergency pathway.

Eating, drinking and energy

Treatment may change appetite, taste, bowel habits and energy. Small, frequent meals and foods containing protein can be easier than large meals. Ask for dietitian support if weight is falling, swallowing is difficult, or you are avoiding many foods. There is no single diet that treats cancer, and severe restriction or prolonged fasting can make it harder to tolerate treatment. Check supplements with your team because some interact with medicines.

Take anti-sickness medicine as prescribed and report vomiting that prevents you keeping down fluids or essential medicines. Seek advice for persistent diarrhoea, dizziness, very little urine or increasing weakness. Fluid recommendations may need adjustment if you have heart or kidney disease. Mouth ulcers, pain or infection that interferes with eating should be treated promptly rather than accepted as unavoidable.

Gentle movement, short walks and planned rest may help fatigue, but activity should match your condition and any surgical or bone-safety restrictions. Fatigue can also reflect anaemia, infection, hormone changes, pain, poor sleep or low mood. Let the team assess a marked or persistent change. Accepting help with shopping, transport or meals can conserve energy for the activities that matter to you.

Live well

Living between treatment visits

Many people move between more intensive treatment and periods of maintenance or monitoring. Plan activity around energy and bone safety rather than expecting the same capacity every day. A physiotherapist can suggest ways to stay active without loading a fragile spine or a damaged long bone. Persistent pain should be assessed and treated; enduring it is not a measure of coping well.

Follow-up usually includes blood counts, kidney function, calcium and the markers that best reflect your myeloma. Ask which changes should trigger a call and whether a rising protein result needs confirmation. Keep appointments even when you feel well, because early kidney or blood-count changes may not cause symptoms.

Thinking about the next treatment

Knowing that several lines of treatment may be available can be reassuring, but not every option is suitable for every person. Discuss future cellular therapy, transplant or specialist referral while you are well enough to consider it. If treatment begins to interfere more than it helps, supportive care can be strengthened and the plan reconsidered with you.

If you have MGUS or smouldering myeloma, monitoring is a purposeful plan rather than neglect. Ask for the expected testing interval and symptoms that should bring the review forward. Avoid comparing your results directly with someone who has active myeloma, because the starting risks and treatment aims are different.

Emotional and practical support

Feeling frightened, angry, sad or uncertain is understandable. You do not have to appear positive all the time. Ask about counselling, psycho-oncology (support for the emotional effects of cancer), support groups or a social worker if worry is affecting sleep, relationships or daily life. Persistent depression, panic or thoughts of self-harm need prompt professional help. Caregivers may need their own support and breaks; one person should not have to manage every appointment and household task alone.

It can help to agree who will update relatives and how much information you want shared. Children usually benefit from honest, age-appropriate explanations and reassurance about who will care for them. Ask permission before discussing private medical information with others. If concentration or memory is difficult, use reminders, a calendar and a trusted companion at important consultations.

Relationships, fertility and sexual health

Cancer and treatment can affect desire, comfort, fertility, body image and confidence. These are valid medical concerns. Raise fertility questions before treatment when possible, because some protective options need to be arranged early. The right approach depends on age, the treatment and how urgently it must start. Do not assume that absent periods or reduced fertility means pregnancy is impossible. Ask about contraception and the safe timing of pregnancy for your specific medicines.

Explain any pain, dryness, erection difficulties or changes in intimacy to the team. Appropriate treatments, rehabilitation and counselling can help. You can choose how much to involve a partner. Advice about hormone-containing treatments needs to take the cancer type and treatment into account; do not start them without discussing suitability.

Planning ahead while living well

Ask for a clear follow-up plan and know which symptoms should be reported between visits. Continue care for other conditions and discuss vaccinations with your oncology team; the timing and suitability of live vaccines can change during treatment. Avoid tobacco and ask for practical cessation support if needed. Activity, food and sleep plans should be realistic for your health rather than another source of pressure.

If treatment is long term, arrange periodic discussions about what is helping, what is difficult and what you want next. Planning for future care can protect your preferences and reduce uncertainty for family. You can discuss who should help with decisions if you become too unwell to speak for yourself, while continuing treatment and everyday life now.

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