# Multiple myeloma
What is it
Multiple myeloma is a cancer of plasma cells. These are white blood cells that normally produce antibodies (immunoglobulins) to defend your body. In multiple myeloma, these cells grow uncontrollably and divide repeatedly. They accumulate mainly in the bone marrow, where they crowd out healthy blood cells. The cancer cells produce large quantities of the same, abnormal antibodies, which can disrupt blood counts.
It differs from other blood cancers in that multiple myeloma primarily affects the bone marrow and usually settles in multiple places in the body – hence the name "multiple". It is an incurable disease, but since the nineteen nineties significantly better treatments have become available that help many people live considerably longer.
Causes
The cause of multiple myeloma is not fully understood. It develops through an interplay of genetic and environmental factors. Gradually, genetic abnormalities accumulate in plasma cells, causing them to get out of hand. This process usually takes years before it manifests as cancer.
A number of risk factors are known:
- **Age**: multiple myeloma occurs mainly in older people (average first diagnosis around 70 years).
- **Gender**: men get it slightly more often than women.
- **Ethnic background**: African Americans have a higher risk than European populations.
- **Exposure to certain substances**: historical exposure to radiation or certain chemicals is suspected, but the evidence is not conclusive.
In many people, multiple myeloma is preceded by a precursor condition: MGUS (monoclonal gammopathy of undetermined significance). This does not automatically lead to cancer, but people with MGUS do have an increased risk.
How the disease progresses
Multiple myeloma usually progresses in phases:
**Active phase (diagnosis)**: The cancer is noticed because one or more symptoms develop – pain, infections, fatigue, or abnormalities in blood tests. Treatment usually begins from this point.
**Response to treatment**: After therapy starts, the disease usually improves (remission). The amount of cancer marker in blood and urine decreases, bone marrow abnormalities diminish. This can last from months to years.
**Stable phase**: Sometimes the disease reaches an equilibrium where it progresses slowly but remains relatively stable.
**Progression or recurrence**: After some time, cancer cells can become resistant to treatment, or the disease can grow again out of control. This is called progression or relapse. Sometimes second or third treatments follow, sometimes other drugs are used.
**Refractory phase**: In later stages, the disease may stop responding to more and more treatments. This stage is more serious and requires different strategies.
The progression is highly individual. Some people have years-long remissions, others see progression return sooner.
Symptoms by phase
**At diagnosis (active disease) may appear:**
- **Bone pain**, especially in back, pelvis and ribs (often due to bone tissue breakdown caused by cancer markers).
- **Fatigue and weakness**: due to anemia (too few healthy red blood cells).
- **Infections**: recurring or severe infections because healthy immune cells are crowded out.
- **Concentration and memory problems**: sometimes caused by substances from the cancer or side effects of underlying kidney function.
- **Fractures** (pathological fractures): weakened bones break more easily.
- **Kidney symptoms**: sometimes kidney function deteriorates step by step, which can cause thirst, frequent toilet use or swelling.
**In remission**: many of these symptoms decrease or disappear. Some people feel almost completely recovered, others retain fatigue or bone pain.
**With progression**: symptoms return to varying degrees. New deterioration in kidney function, more infections, or increased bone pain can emerge.
**Side effects of treatment**: during therapy, the following may occur: infections (due to immunosuppression), nerve pain in feet and hands, gastrointestinal disorders, and in certain phases an increased risk of other cancers in the long term.
What it means for daily life
Multiple myeloma complicates daily life, especially in phases with many symptoms, but also during treatment.
**Work and activities**: many people must adjust their work or stop temporarily, especially during intensive treatment. After remission, many can partly resume their rhythm, although fatigue sometimes remains bothersome.
**Physical burden**: bone pain and fatigue limit physical activity and household tasks. With bone loss, precautions are needed to reduce fall risk.
**Hospital visits**: regular check-ups, blood tests, and sometimes hospital stays are part of life. After remission, the intervals between visits become longer, but lifelong monitoring remains.
**Social and emotional aspects**: knowing that you have an incurable disease can be psychologically heavy. Many centres offer psychological support. Ongoing uncertainty about progression requires adaptability.
**Infection risk**: especially during treatment, caution must be exercised (regular hand washing, avoiding contact with sick people).
**Nutrition**: no specific diet is required, but good nutrition helps against fatigue. Some medications limit food options (for example, certain interactions).
**Medicines**: many medications must be taken regularly, also for side effects (for example, against nausea or nerve pain).
Outlook
The outlook for multiple myeloma has improved considerably over the past two decades. In the Netherlands, between 2015-2020, on average about 70-75% of patients lived at least 5 years after diagnosis (five-year survival at population level). This figure says nothing about one person – it depends strongly on the specific condition, the type of cancer marker, and how well it responds to treatment.
**Favourable factors** include: younger age at diagnosis, no serious kidney damage, and rapid response to initial treatment.
**Less favourable factors** include: older age, certain genetic abnormalities in the cancer cell, pre-existing kidney damage, or rapid progression despite treatment.
In recent years, new medicines have become available (immunotherapies, bispecific T-cell engagers, and other innovative agents) that improve response in later stages. Research is ongoing; every few years new possibilities are added. However, this does not mean that every patient benefits from every innovation – much depends on individual factors.
Many treatment centres speak of "chronic disease with periods of remission", rather than an incurable sentence. Many with multiple myeloma live years – sometimes ten or more – after diagnosis, especially if they are young and detected early.
Frequently asked questions
**Is multiple myeloma hereditary and can I pass it on to my children?**
Multiple myeloma itself is not hereditary. It usually arises from random genetic abnormalities that accumulate in your body, not from inherited abnormalities that you have received from parents or can pass on to children. However, a slightly increased risk may occur in some families, but this is not certain. Your children do not have a substantially increased risk.
**Can multiple myeloma be completely cured?**
Multiple myeloma is currently considered incurable – most experts no longer count on complete cure, but on long-term remissions and disease control. However, for a minority of patients, after prolonged treatment and sometimes stem cell transplantation, the cancer sometimes remains away for a very long time. The line between "cure" and "very long remission" is blurred. Research continues on ways to make remissions last longer.
**Can I live normally during remission?**
Many patients in remission feel reasonably healthy and see their daily lives return much to normal. However, the need for regular check-ups remains and you must be careful with infections. Fatigue can persist. Some return partly to work, others travel and pursue hobbies. It depends greatly on how long the remission lasts and whether side effects from treatment remain.
**What happens if my disease becomes resistant to medication?**
If multiple myeloma becomes resistant (progression despite treatment), there are usually still other options: different medication, different regimen, or combination therapies. What is possible depends on what has already been tried, your overall health, and what is available at your treatment center. This is a moment for in-depth discussion with your doctor.
---
_This information never replaces a doctor's judgment. Always discuss your situation with your own healthcare provider._