Myeloma is a cancer of the bone marrow. The disease can differ greatly between different people and can also vary with the time of a person. Myeloma is not possible to get rid of, but most get better with treatment and can live a good life. Every year about 700 people get myeloma. Most are over 60 years old.
What is myeloma?
Myeloma is a form of cancer of the bone marrow. In the bone marrow different blood cells are formed, for example white blood cells. White blood cells are part of the immune system. They fight viruses and bacteria that should not be in the body. Myeloma means that certain white blood cells become cancerous cells.
Here you can read more about the blood and the immune system .
Myeloma is sometimes called multiple myeloma.
Myeloma is not the same as skeletal cancer or leukemia .
What happens in the body to cancer?
The body consists of many billions of cells. The cells divide to form new cells so that the body can function. Sometimes it gets wrong when a cell divides. Usually, it does nothing or the cell can stop the error from spreading to more cells at the next cell division. But sometimes it doesn’t work. Then more and more altered cells can be formed for each cell division. Eventually, cancer cells can be formed. The cancer cells divide uncontrollably and do not die when they should. You can read more in the article What is Cancer?
Myeloma can affect the body in several ways
The myeloma cells proliferate uncontrollably and displace the other blood cells so that they become deficient. It can make you tired and short of breath. You can also get infections more easily.
Myeloma cells send out substances that damage the skeleton.
The skeleton becomes thinner and brittle. It can hurt the skeleton and you can easily get cracks for example. It is different which parts of the skeleton are affected. The chest, back and pelvic bone are the most common parts.
The skeleton contains lime. It gets into the blood if the skeleton gets thinner. Lime can affect your kidneys or cause you to become tired or confused.
Myeloma does not really form cancerous tumors, but sometimes myeloma cells can cause nodules or nodules. The nodules or nodules are called the plasmocytoma. They can press on the spinal cord or nerves. Then you may get reduced feeling or paralysis in the legs.
Myeloma often develops over a long period of time and it can take a while before you get any symptoms, sometimes for many years. Sometimes the disease is detected when you are investigating for something else, such as slight anemia or high lowering .
When the disease starts to become noticeable, you may have one or more symptoms:
- You have pain in the skeleton, often in the back or chest. It hurts more when you move or exert yourself.
- You are tired.
- You get infections easily, such as respiratory infections.
- You will be confused.
- It gets foamy when you pee.
- You get degraded feeling or paralysis in the legs.
The symptoms do not have to be due to myeloma but may have other causes.
When and where should I seek care?
If you think you have myeloma, contact a health care provider. You can contact most receptions by logging in.
Investigations and investigations
First you get to the health center where you leave blood and urine samples.
If you need to be examined more, you may come to a hematologic reception. There, the staff are specialists in blood diseases. Here you can read more about some of the tests and exams that are common.
Blood tests and urine tests give you answers if you need more research
Blood tests can show if the blood contains a substance that is common if you have myeloma. The substance is called the M component. Most people who have M-component do not have myeloma but are healthy. Read more in the chapter What causes myeloma?
Blood tests can also measure the blood value , lime value and kidney function.
Urine tests can show if there are signs of myeloma.
Bone marrow tests measure white blood cells
A bone marrow test can show if there is too much of the kind of white blood cell that becomes cancerous cells if you have myeloma.
X-rays may show bone damage
You will be x-rayed, usually with computed tomography . The study can show whether the skeleton has become thinner or if there are cracks or fractures.
Standardized course of care for myeloma
The examination is done according to a standardized course of care if the doctor suspects you have myeloma. Standardized care is a way of organizing the investigation so that it goes as quickly as possible.
The doctor will arrange a referral and tell you why you should be examined, what it means and when you can be told if you have cancer or not.
It is often quick to get calls for examinations in a standardized course of care. It is good if you are clear about how the health care personnel most safely reach you, so that you do not miss any time.
What causes myeloma?
No one knows why some people get myeloma. There are no known risk factors, such as for some other cancers.
Rare with hereditary myeloma
Almost everyone who gets myeloma is completely alone in their family to develop the disease. The hereditary risk that exists sometimes is very small.
MGUS can be a precursor to myeloma
Some people who do not have myeloma may still have the M component of the blood that is typical of some myeloma. The condition is called MGUS and is not counted as a disease. You have no symptoms and no other tests show myeloma. Over time, MGUS can develop into myeloma, but the risk is low.
Treatment of myeloma
You need treatment if you suffer from the disease. The goal of the treatment is to remove as much as possible of the myeloma cells and symptoms and to prevent the disease from developing. It can take from a few months up to a year. Then the treatment is complete and most can live much as usual.
Some are advised to continue with one or more of the drugs fixed in smaller doses. It’s called maintenance treatment.
It is different how long the disease can be controlled with or without maintenance treatment. Sometimes it works for several years.
You will receive treatment again when the disease symptoms return.
The treatment may be different for different people or if you have received treatment before. What works best for you depends on how you feel, what you can do with and what you want yourself. The most common is a combination of drugs that inhibit myeloma cells in different ways.
You may need one or more of the following medicines:
- proteasome inhibitors
- monoclonal antibodies.
Here you can read more about the different medicines for myeloma and other treatments you may need at the same time.
Cytostatics prevent cells from dividing
Cytostatic drugs are drugs that prevent the cancer cells from dividing and becoming more numerous. You get cytostatic drugs as tablets, syringes or as a drop in the blood.
If you have hair, cytostatics can cause you to lose your hair. You may feel bad. You may also become extra susceptible to infection. You will be offered a wig before treatment if the risk is high that you will lose your hair. The hair comes back after the treatment. There are drugs that prevent and relieve other side effects, such as nausea.
Cortisone makes the cytostatic more effective
Cortisone is a hormone that the body itself produces. There are also medicines with cortisone. In high doses it works much like cytostatics if you have myeloma. It also amplifies the effect of other cytostatic drugs. You get cortisone as tablets.
Cortisone can cause you to swell on your face and get a stomach ache. The treatment can also affect your mood and sleep and make you feel very thirsty. Tell your health care provider if this is so for you. The cortisone dose can then be adjusted to relieve the side effects. Side effects disappear after treatment.
Immune modulators strengthen the body’s own defense against myeloma
Immune modulators are drugs that strengthen the body’s own defense against myeloma cells. There are various immune modulators.
The treatment can make you tired, dizzy and have constipation or diarrhea. You may also get reduced sensation or tingling in the hands and feet and become extra susceptible to infection. Many side effects can be relieved. You also need drugs that prevent blood clots.
Proteasome inhibitors prevent myeloma cells from growing
Proteasome inhibitors are the collective name for a group of drugs that prevent cancer cells from growing and functioning. There are various protease inhibitors. You will receive the medicine as a syringe under the skin, drip into the blood or as tablets.
The drugs have slightly different side effects, but the drug used most often can affect the nerves so that it, for example, irritates or aches in the hands and feet. Before each treatment, the nurse asks what possible effects you have felt.
Monoclonal antibodies prevent myeloma cells from dividing
Monoclonal antibodies are targeted drugs that seek out cancer cells and prevent them from dividing and becoming more numerous. You will receive the drug as a drop when you visit the treatment clinic. It usually takes several hours. You can go home afterwards.
In the beginning, most people receive treatment every week and eventually once a month.
It is common to have allergic complaints, especially at the first treatment. It can be, for example, chills, fever or nausea. It is important that you tell immediately if you feel any symptoms when you receive treatment.
High dose treatment with stem cell support
Sometimes it is possible to get a special kind of treatment with cytostatics. It is called high dose treatment because you then get a lot of cytostatic drugs. The dose is so high that it can damage the bone marrow. Therefore, some of your stem cells are saved first. After the cytostatic treatment, you get the stem cells back so that new bone marrow can be formed.
The body must be strong enough to cope with the stress of the treatment. Therefore, you may not receive high-dose treatment with stem cell support .
You usually need different treatment at the same time
You may need supportive treatment at the same time as the treatment for the disease. This is to make you feel as good as possible. Here are examples of such treatments. You may need one or more of them.
Treatment that strengthens the immune system
You may need antibodies that strengthen the immune system. You either receive the treatment as a drop in the blood in the hospital once a month or you treat yourself with a syringe once a week.
The treatment can make you feel sick, have a headache, fever or an allergic reaction but it is not that common.
You may also need preventative treatment with antibiotics or antifungal or viral agents.
You may have anemia , also called anemia. Then you can get blood transfusions or treatment with a growth hormone called erythropoietin that causes red blood cells to form. You get the treatment as a syringe under the skin.
Bisphosphonates strengthen the skeleton
Myeloma can thin and damage the skeleton. Then you can get a drug with bisphosphonates. It prevents the skeleton from getting thinner and instead makes it build up again. The treatment is given as a drop in the blood once a month.
You need to be examined by a dentist before treatment begins. This is because bisphosphonates can cause jaw damage if you have any problems with your teeth.
Treatment if it hurts
Myeloma can damage the skeleton, causing you pain. It often gets better when treatment for the disease has started. But in the beginning you may need strong and quick pain relief.
If ordinary painkillers are not enough, you may need morphine. But there are many different kinds of painkillers. It may take time to find the pain relief that is best for you. You and the doctor may try you out.
Local radiation therapy
Radiation therapy can provide quick relief if you have a skeletal pain or a plasmocytoma that presses. You will receive radiation treatment for one to five days. Sometimes you may get more pain for a few days before the treatment gives effect.
After the treatment
The treatment is complete when as many as possible of the myeloma cells and symptoms are gone. Instead, you get regular checkups to measure the level of myeloma cells. It is done with blood tests and sometimes with urine tests. You will receive new treatment if the level of myeloma cells starts to rise again.
It varies from person to person how often you need to be in control.
Fertility and breastfeeding
Treatment can affect fertility. Talk to your doctor before treatment if you want to discuss the possibilities of having a pregnancy after treatment for cancer. Here you can read more about the fertility after the cancer treatment .
It is good if you protect yourself from pregnancy while receiving treatment against cancer, even if fertility is impaired. It is also good if it takes some time after treatment before you try to get pregnant or use your sperm in a pregnancy. Consult your doctor.
Also consult your doctor if you have myeloma and want to breastfeed.
Getting a cancer message
There are many ways to respond to a cancer message. You may need plenty of time to talk to your doctor and other healthcare professionals about what the message means. If possible, please let a relative accompany you. The related person can act as a support and help to remember what has been said.
You have the right to understand
You can also ask to have the information written down so you can read it peacefully. Ask questions if you don’t understand. You have the right to receive information in your own language. You also have the right to receive interpreting assistance if you have a hearing impairment .
In many hospitals there are special nurses called contact nurses who can provide support and also help with various practical things.
For many, it usually feels easier once treatment has begun and they know what is going to happen.
You can get support in several places
The contact nurse or the hospital’s curator can help you if you need to talk more or have questions.
You can contact Cancer Counseling, the Cancer Foundation or, for example, a patient association. The Blood Cancer Association is an association for people with myeloma and for relatives.
Here you will find contact information and read more about how you can get advice and support in cancer.
Children also need to know
A minor child has the right to receive information and support based on his or her own needs if a relative is ill. It is the responsibility of care. If you want to tell the child yourself, you can get help with what you have to say. Often it is good to make children as involved as possible, no matter how big or small they are. That doesn’t mean you have to tell everything.
You can read more in the text Talking to children when a parent is seriously ill.
Living with myeloma
The disease can vary greatly from time to time. You may have periods when it feels better or worse.
Getting the support you need
You may have long periods without symptoms when you do not notice the disease at all. You may need rehabilitation . It can be anything from medical help to support for you to feel good mentally and socially. It is good if you, together with the healthcare staff, think about your needs as early as possible. Together you can write them down in the care plan.
Physical activity strengthens the skeleton and often also helps if the disease and treatment make you feel very tired. It is important that you move even if you are in pain. A physical therapist or physiotherapist can suggest exercises and activities that work for you.
Eat well and good
Eat as varied and nutritious as you can. Then you get minerals like lime, which is good for the skeleton. Drink extra, up to a liter more a day. It dilutes the urine so that the kidneys are not damaged by the slag products that the disease and treatment sometimes form. Here you can read more about food in cancer .
It is common to feel very tired. You may become more easily irritated and you may not be able to cope with things you usually do. It can affect your relationships. Physical activity can make you feel less tired. When you need to rest, take several short rest breaks rather than a single longer rest break.
Take help against the fatigue if you need to
The fatigue one can feel in cancer is called fatigue. It can have several causes. For example, the disease can create substances in the body that cause fatigue. The treatments can make you very tired. Anemia , anxiety or depression can be other causes.
Tell the health care provider if you are very tired. Make sure you get to know about the fatigue and what it is due to. Often there is help to get. If you have close relatives, it is good that they also get information. It increases understanding from the surroundings.
You can hang out despite infection sensitivity
You can usually hang out and meet others, although myeloma can make you more susceptible to infections. The infections you can get are almost always due to bacteria you have yourself. It is uncommon for the infection to be due to infection by another person. How infectious you are varies. Talk to the contact nurse or the doctor if you are unsure.
Have sex if you want
It is possible to have a good sex life and cohabitation even if you have myeloma. During certain periods, you may have difficulty in bleeding during friction. Then it is good to take it carefully in, for example, intercourse.
Sex desire can decrease for shorter or longer periods. It can depend on many things. Here you can read more about cancer and sexuality .
Tell your doctor or contact nurse if you feel that sexuality has become a problem. Then you can get help.
Sometimes it can be difficult to be close to someone who is ill. Maybe you want to give support while you have a strong concern and feel bad. It is very common to do so.
If you have other people in your area, try letting them support you. It can be family members, friends or acquaintances. Often it will be easier for them to help you if you tell them how it feels and show if you are worried or sad.
You can get help from the contact nurse or a curator at the hospital if you are close and need supportive calls.
Be involved and influence your care
You have the right to be involved in your care whenever possible. The healthcare staff should tell you what treatment options are available. They should make sure you understand what the different options mean, what side effects are available and where you can get treatment. This way you can help decide which treatment is right for you.
You decide on the care plan
You can make a care plan together with the contact nurse, the doctor and other staff. The care plan should answer questions that are important to you. Here you can read more about the contact nurse and the care plan .
New medical assessment
You can get a new medical assessment if you are unsure if you are receiving the care and treatment that is best for you. You will then see another doctor, usually at another specialist clinic. Ask your doctor if you want to know more about how to get a new medical assessment.