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POEMS syndrome: what it is and how it is treated | CION Cancer Clinics
POEMS syndrome is a rare disorder in which a small clone of faulty plasma cells causes nerve damage, usually starting in the feet, along with enlarged organs, hormone problems and skin changes. It is often mistaken for another nerve disease at first. It is treatable: radiotherapy when the disease sits in one or two bone spots, and medicines given across the body when it is more widespread. At CION Cancer Clinics, every leukaemia, MDS and MPN case is reviewed by our haematologist and discussed at a tumour board before a plan is agreed.
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Medically reviewed by Dr. Basudev PokhrelConsultant Haematologist · last reviewed September 2026, next review due September 2027
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The short answer
What is POEMS syndrome?
POEMS syndrome is a rare condition in which a small group of faulty plasma cells releases signals that damage the nerves and many other parts of the body. It is treatable, and the treatment is aimed at those plasma cells, not only at the nerve symptoms.
Why it is called POEMS
The name is made from the first letters of five common features. Not everyone has all five, and the letters do not appear in the order they are listed. Most people first notice numbness, tingling or weakness in the feet that slowly climbs up the legs. The other features are often found only when a doctor starts looking for them. That is why the diagnosis so often takes a long time, and why families should keep every report from every specialist seen along the way.
How it relates to blood cancer
Plasma cells are white cells that make antibodies. In POEMS, one faulty plasma cell makes many copies of itself. The number of faulty cells is usually small, much smaller than in myeloma. The harm comes mostly from a signalling protein called VEGF, which the faulty cells drive up. VEGF makes blood vessels leaky and causes much of the swelling, skin change and nerve damage.
POEMS is uncommon, and many haematologists see only a few cases in their career. It is reasonable to ask whether your team has managed it before.The five letters
What does each letter of POEMS stand for?
These are the features doctors look for. Your own report may mention only some of them.
P: Polyneuropathy
Damage to many nerves at once. It usually starts as numbness, tingling or burning in both feet, then weakness, trouble climbing stairs and falls.
O: Organomegaly
Enlarged organs. The liver, the spleen or the lymph nodes may be bigger than normal, often found on a scan rather than felt. Fluid may also collect in the legs, the tummy or around the lungs.
E: Endocrinopathy
Problems with hormone glands. This can mean an underactive thyroid, raised blood sugar, breast swelling in men, or missed periods in women.
M: Monoclonal plasma cells
An abnormal antibody protein in the blood or urine, made by the faulty plasma cells. Every person with POEMS has this.
S: Skin changes
Darkening of the skin, thicker skin, extra body hair, pale nails or small red bumps that look like blood blisters.
Not sure whether this applies to you?
Ask an oncologistOften confused
Why is POEMS so often mistaken for another nerve disease?
The nerve symptoms look very like CIDP, a common inflammatory nerve condition. These clues point towards POEMS instead.
What was expected
What suggests POEMS
Nerve symptoms improve with the usual CIDP treatment
Symptoms keep getting worse despite that treatment
Only nerves are affected
Swelling of the legs, skin change or thyroid trouble appear as well
Blood counts are ordinary
Platelets or haemoglobin are higher than usual
No abnormal protein in the blood
A small abnormal protein, often of the lambda type
Getting a diagnosis
Which tests confirm POEMS syndrome?
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Nerve conduction tests
Small electrical pulses measure how well the nerves carry signals. The pattern of damage can raise the question of POEMS.
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Blood and urine protein tests
Tests called immunofixation and serum free light chains look for the abnormal antibody. The amount is often small, so a sensitive test matters.
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VEGF level
A raised VEGF in the blood strongly supports the diagnosis. It is also used later to see whether treatment is working.
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Scans of the bones
A CT or PET-CT looks for hardened patches in the bones, called sclerotic lesions. These are common in POEMS and are often the most useful place to take a biopsy from.
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Biopsy and hormone tests
A bone lesion or bone marrow biopsy shows the faulty plasma cells. Thyroid, sugar and other hormone tests complete the picture.
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Treatment
How is POEMS syndrome treated?
Treatment depends mainly on whether the faulty plasma cells are in one or two spots, or spread through the bone marrow. The aim is to remove the source of the harmful signals so the nerves and other organs can slowly recover. Your team will explain which group you are in once the scans and marrow biopsy are back, and why.
When the disease is limited to one or two bone spots
Radiotherapy aimed at those spots is often the main treatment. It is suited to people whose bone marrow biopsy does not show wider disease. Treatment is given as short daily sessions over a few weeks. Tiredness and soreness of the skin over the treated area are the usual side effects, and they settle after the course ends.
When the disease is more widespread
Medicines given across the body are used. These may include lenalidomide with a steroid called dexamethasone, or other myeloma medicines. For fit people, high-dose chemotherapy followed by a transplant of their own stem cells is often discussed. It does not suit everyone, especially people with serious weakness, lung or heart problems. CION does not perform transplants; the haematology team can assess whether one fits and coordinate care with a qualified centre.
Care for the symptoms alongside
Physiotherapy, splints for foot drop, hormone replacement and help with swelling all matter. Nerve recovery is slow, often over many months, and the improvement may not be complete. Swelling and skin changes often settle sooner than walking does.
What this page cannot tell you
This page cannot tell you which treatment fits you or how much your nerves will recover. Those answers depend on how widespread the disease is, how severe the weakness was before treatment, and your general health. Ask your haematologist to explain your own picture, and ask again if an answer is unclear.
Commonly believed
What do families often misunderstand about POEMS?
"The legs are weak, so this is a nerve problem, not a blood problem."
The nerve damage is driven by the faulty plasma cells. Treating only the nerves misses the cause, which is why a haematologist needs to be involved.
"The protein level is tiny, so it cannot be important."
In POEMS the abnormal protein is usually small. Its size does not reflect how much damage the condition can cause.
"If the walking has not improved after treatment, it has failed."
Nerves heal very slowly. Blood markers such as VEGF often improve long before strength returns. Your team judges progress on several measures together.
"It is myeloma, so it will behave like myeloma."
POEMS is a separate condition. It usually has fewer faulty cells and a different pattern of illness, and it is managed differently.
Questions we are asked
Common questions about POEMS syndrome
Is POEMS syndrome a cancer?
It is a plasma cell disorder, grouped with the blood cancers because a clone of faulty plasma cells lies behind it. The number of faulty cells is usually small. Most of the illness comes from the signals those cells drive, rather than from the cells crowding out the marrow as in myeloma.
Can the nerve damage get better?
Often it improves once the plasma cells are treated, but slowly. Many people notice gains over many months, and some keep improving for longer. Recovery may not be complete, especially if the damage was severe before treatment. Physiotherapy helps you make the most of whatever recovery comes.
Why did it take so long to diagnose?
This is very common. The nerve symptoms look like other conditions, the abnormal protein is small, and the other features appear gradually. Many people see several specialists first. A delay does not mean treatment can no longer help, so focus on the plan from here.
Is POEMS inherited? Should my children be tested?
POEMS is not known to run in families. It comes from changes in plasma cells that happen during life, not from genes passed on by parents. Your children do not need testing for it. If they have their own symptoms, they should see a doctor in the usual way.
Is POEMS linked to Castleman disease?
Sometimes. A small number of people with POEMS also have Castleman disease, a condition of the lymph nodes. Your team may examine a lymph node sample to check. When both are present, the treatment plan takes both into account.
Which tests are used to follow progress?
Usually the VEGF level, the abnormal protein, blood counts, nerve examinations and repeat scans of any bone lesions. Walking and grip strength are checked too. No single result tells the whole story, so your team looks at them together over time.
Can POEMS come back after treatment?
It can, sometimes years later. A rising VEGF level or returning symptoms may be the first sign. This is why long-term follow-up continues even when you feel well. If it returns, further treatment is usually possible, and your haematologist will explain the options.
What should I bring to a first appointment?
Bring nerve conduction reports, every blood and urine protein test, scans, biopsy reports and a list of all medicines taken so far, including steroids or treatment given for CIDP. A short written timeline of when each symptom began helps the team see the whole picture quickly.
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Dr. Basudev Pokhrel reviews blood counts, transfusion needs and blood disorders, and works with the CION tumour board on blood cancers.
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Sources
- National Cancer Institute — Plasma Cell Neoplasms (Including Multiple Myeloma) Treatment (PDQ) - Patient Version
- Leukemia & Lymphoma Society — Myeloma
- American Society of Hematology — Blood Cancers: Myeloma
- Cancer Research UK — Myeloma
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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