Myeloma

Myeloma is a cancer of the plasma cells, the cells that normally make antibodies. One altered clone grows in the bone marrow and does two things at once: it crowds out normal blood production and floods the body with a single useless protein known as a paraprotein. At the same time the tumour dissolves bone from within. That is where the whole set of problems comes from: bone pain and fractures, anaemia, kidney damage and weak defences against infection. It is also called multiple myeloma, because the deposits usually appear in several bones at once. A complete cure is achieved only rarely, but holding the disease in check for years is now ordinary.

How myeloma makes itself known

The first thing is usually pain in the back or the ribs. It differs from an ordinary bad back: it does not settle with rest, it wakes you at night, it sharpens with coughing and sneezing, it lasts for weeks and it ignores heat rubs and massage. Sometimes a bone breaks over nothing at all — an awkward turn or a bout of coughing — and that fracture is itself reason enough to look for a cause.

The other signs form a recognisable pattern.

• Anaemia: tiredness that rest does not lift, breathlessness on ordinary exertion, pallor, palpitations.
• Kidneys: swelling, frothy urine, passing less water; often the damage shows in a blood test before the person notices anything.
• Too much calcium in the blood: heavy thirst and frequent passing of urine, nausea, stubborn constipation, muscle weakness, confusion and drowsiness.
• Repeated infections: chest infections that drag on, pneumonia, urine infections, because working antibodies are in short supply.
• Less often, weight loss, night sweats and numbness of the feet and hands.

The reverse also happens: there are no complaints at all and the abnormality turns up in a blood test taken for something else. That is not unusual, and it is no reason to treat the illness lightly.

What comes before myeloma

Myeloma nearly always has a forerunner. Monoclonal gammopathy of undetermined significance is a state in which the paraprotein is already in the blood but the disease is not there yet: the bones are intact, the kidneys work and the blood count is normal. It is found by chance, mostly in older people, and it needs no treatment — it needs watching, because in about one person in a hundred each year it turns into myeloma.

The next step up is smouldering myeloma: there is plenty of paraprotein and more plasma cells in the marrow, but no organ damage yet. Some of these people are monitored and some are treated early, if the tests point to a high risk of progression. The point of these labels is simple: they say whether to treat now or to check regularly, which is exactly why such a finding must never be left without a follow-up.

Who gets it

Myeloma belongs to the second half of life: the great majority of patients are over sixty, and in young people it is uncommon. Men are affected slightly more often than women, and people of African descent considerably more often than Europeans, with the disease also starting earlier in them.

The risk is a little higher if a close relative has had myeloma or a gammopathy, and with substantial excess weight. There is no known cause to point at as the culprit: myeloma is not catching, it does not pass on through caring for someone, and it does not arise from diet, temperament or past upsets.

How the diagnosis is reached

The key is to look for that surplus protein. Routine biochemistry will not show it, and that is where time is most often lost.

• Serum protein electrophoresis with immunofixation is the test that detects the paraprotein and identifies its type.
• Serum free light chains and protein in the urine. In roughly one patient in five the tumour produces light chains only, and on ordinary serum electrophoresis that myeloma can be missed.
• Full blood count, calcium, creatinine, total protein and albumin: they show whether organ damage has already begun. An indirect clue is a very high ESR alongside unexplained anaemia.
• Low-dose CT of the whole skeleton, and MRI or PET where needed. These are the scans that find the areas of bone destruction.
• Bone marrow biopsy with genetic testing: it shows the proportion of plasma cells and the chromosome faults on which the outlook and the choice of treatment depend.

It is worth knowing what does not find myeloma. A plain X-ray of the spine only shows a deposit once a third of the bone has been destroyed, so a normal film rules nothing out. A bone scan, used to hunt for the spread of other cancers, is almost useless here: it picks up places where bone is being laid down, and myeloma only dissolves it. A normal calcium or creatinine does not clear the suspicion either, because the organs are not affected in everyone and not from the start.

When hours matter

Call an ambulance (in most European countries, 112) if there is:

• weakness or numbness in the legs, unsteadiness, an inability to stand, band-like back pain with numbness around the perineum, or loss of control of the bladder or bowel — this is compression of the spinal cord, where the count is in hours and delay leaves permanent paralysis;
• increasing confusion, unrelenting vomiting or sudden drowsiness alongside heavy thirst — a dangerous rise in calcium is likely;
• a temperature with shivering, particularly during a cycle of treatment;
• sudden severe back pain after a trivial movement, if the person cannot stand;
• abrupt breathlessness, chest pain or a blackout.

See a doctor the same day if bone pain has worsened and painkillers no longer touch it, if the amount of urine has dropped sharply or swelling has appeared, or if weakness and breathlessness are building. Nobody should drive when spinal cord compression is suspected: get someone to take you, or call an ambulance.

What treatment involves

Myeloma treatment is built from several drugs that work in different ways and is given in cycles. The regimen is matched to age, kidney function, other illnesses and the genetics of the tumour, and once a response is achieved many people continue on maintenance treatment to push back the return of the disease.

• Proteasome inhibitors stop the tumour cell clearing the protein it has piled up, so it dies of its own production.
• Immunomodulatory drugs change the way the immune system works so that it holds the tumour down; they are usually taken as capsules.
• Antibodies against the CD38 protein on the surface of plasma cells are now an almost standard part of modern regimens.
• Steroids act on myeloma in their own right and strengthen the other drugs.
• A transplant of a person's own stem cells after high-dose chemotherapy is the standard for those fit enough to come through it; it lengthens remission but does not cure.
• Radiotherapy relieves pain in one particular bone and is used where a fracture threatens or the spinal cord is compressed.
• When the disease returns the regimen is changed rather than repeated; held in reserve are treatments that teach a person's own T cells to recognise the tumour.

Protecting the bone is a separate strand. Bisphosphonates and similar drugs slow the destruction, ease pain and reduce the risk of fractures, and almost everyone is given them. Before starting, the teeth need to be sorted out: on this treatment an injury to the jaw heals badly, so an extraction is better done beforehand.

Kidneys, bones and daily life

The kidneys are the most vulnerable point in myeloma, and a great deal depends on simple things. Drink enough, unless your doctor has restricted fluids. Anti-inflammatory painkillers — ibuprofen, diclofenac and the like — harm the kidneys in this illness, so pain relief is chosen by the doctor: usually paracetamol, and for severe pain drugs of another class. Mention the diagnosis before any scan with intravenous contrast.

Bones are looked after without going overboard: no heavy lifting, no jumping or jerky loads, but movement is necessary. Walking, swimming and balance work preserve muscle and cut the risk of falls; a physiotherapist helps set the level. At home it is worth taking up slippery rugs and improving the lighting.

With few working antibodies, infections run a harder course. Flu, pneumococcal and covid vaccination are given as the doctor advises, and live vaccines are not used during treatment. Any temperature is a reason to ring your team rather than sit it out.

If the disease stops responding, help does not end. The palliative care team deals with control of pain and breathlessness, and it makes sense to involve them early, alongside the main treatment, rather than at the very end.

Online consultation

An online appointment is useful earlier than people expect. If back pain has lasted more than a month, wakes you at night and has nothing to do with exertion, the doctor can say which tests are worth having before you start going from clinic to clinic, and what to look for beyond the usual wear and tear of the spine. If a paraprotein or a monoclonal gammopathy has already been found, the doctor explains what it means, whether treatment is needed now and how often checks should be done.

Once the diagnosis is made, an online consultation helps make sense of the report and the numbers, deal with the side effects of a cycle, agree pain relief that is safe for the kidneys, and decide which symptoms cannot wait for the next scheduled visit. Have your letters ready, along with recent blood and urine results, scan reports and a list of medicines with doses. An online consultation does not replace a face-to-face haematology assessment, a marrow biopsy or imaging, and suspected spinal cord compression or a high temperature needs urgent care.

This material is for information only and does not replace medical advice.