Leukemia – blood cancer

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Leukemia is a collective name for several different cancers in the bone marrow where the blood is formed. The treatment you will receive and how it will go depends, among other things, on your leukemia. More and more people who have leukemia can receive treatment that removes the disease or that makes it possible to live a good life for a long time.

Different forms of leukemia

Leukemia is cancer in the cells that are to become different blood cells. The leukemias are divided into lymphatic and myeloid leukemias, depending on the cells that are diseased.

Leukemia is also divided into acute and chronic leukemias depending on how quickly the disease develops. Chronic leukemia is more common than acute leukemia. But overall, leukemia is quite uncommon.

There are some other leukemias that do not fit into any of the divisions. They are not described in this text.

Acute leukemias: ALL and AML

Acute lymphatic leukemia, ALL, is more common in children. Acute myeloid leukemia, AML, is more common in adults. The younger you are, the greater the chance of getting rid of acute leukemia. Most effective is the treatment for children with ALL. Over 85 percent of all children with ALL get rid of the disease after treatment. The chance of getting rid of the disease is less in adults and decreases with age. One reason is that the diseased cells then have a character that makes them more difficult to treat.

It is important to get treatment quickly if you have acute leukemia.

Chronic Lymphatic Leukemia, KLL

The most common leukemia form in adults is chronic lymphocytic leukemia, KLL. Disease is also a form of lymph node cancer. The disease is often detected without any symptoms, for example in connection with a health check. The disease is mostly life-long. You get treatment when you have a problem. You go on regular checks when you are without the hassle.

Chronic myeloid leukemia, KML

Chronic myeloid leukemia, KML, usually develops slowly. The goal of the treatment is to prevent the disease from passing into more acute phases. The disease is mostly life-long. Often you can live as usual, despite the illness and the treatment.

Symptoms of Leukemia

You may have one or more of these problems if you have leukemia:

  • You may feel tired and out of breath.
  • You may have an infection that does not pass.
  • You get bruises and have easy bleeding even though you haven’t been hurt.
  • You have a fever that does not go over.
  • You sweat, especially at night.
  • You lose weight without changing habits.
  • You have pain in joints and skeletons.
  • You have swollen lymph nodes.
  • You have swollen spleen. It can feel like a weight in the stomach or make you feel fast when eating.

The problems often come quickly if you have acute leukemia and more slowly if you have chronic leukemia. The symptoms can also be due to many things other than leukemia.

When and where should I seek care?

If you think you have leukemia, contact a health care provider. You can contact many receptions by logging in.

Investigations

First, you have to tell the doctor how you feel. Then the doctor looks and feels on the body to detect symptoms that may indicate leukemia. You also submit blood tests. The test answers usually come within a day and are often enough to tell if there is a suspicion that you have leukemia.

Leukemia is being investigated at a specialist clinic

You may come to a specialist clinic if your doctor suspects you have leukemia. The specialist clinic is called a hematology clinic or medical clinic. Some leukemias need to be investigated and treated quickly while there is less urgency in other forms of the disease.

You may submit several different tests

At the specialist clinic, you will be given more blood tests. Here are examples of other samples that may be needed:

Bone marrow samples

A bone marrow test can confirm if you have leukemia and provide more detailed information about the disease. It is common for the sample to be taken on the back of the hip bone. You get local anesthesia. Then a few milliliters of bone marrow is drawn from the hip with a needle. It may feel uncomfortable but goes over quickly.

Sampling usually does not cause any problems afterward.

Spinal fluid test – lumbar puncture

A spinal fluid test can show if the disease is also present in the nervous system. The sample is taken between two vertebrae in the lower back with a thin needle. It may feel like a light pressure but usually doesn’t hurt. You can get local anesthesia if you want. After sampling, you will receive a small dose of cytostatic drugs. It is a drug that prevents sampling from spreading leukemia cells.

The sampling itself takes one to five minutes. Afterward, you get to rest for half an hour and two hours. You may have headaches after the examination, but it is unusual.

Lymph node test

Sometimes the doctor will need to take samples from one or more lymph nodes. Then they use a needle to extract some tissue that can be analyzed in the laboratory. The sampling itself goes pretty fast. The entire survey takes a few minutes. Sampling can feel uncomfortable but usually does not hurt. You can get local anesthesia.

Sometimes a piece of the lymph node needs to be removed to be examined. The operation is usually done in an operating department. You usually get local anesthesia but sometimes you may need to be anesthetized.

Standardized care course at ALL, AML and KLL

You will be examined according to a standardized course of care if your doctor suspects you have any of the following leukemia diseases:

  • acute lymphatic leukemia, ALL
  • acute myeloid leukemia, AML
  • chronic lymphocytic leukemia, KLL.

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.

Treatment of acute leukemias: ALL and AML

The goal of the treatment is to remove all leukemia cells and reduce the risk of relapse. The treatment is given in several parts that together can take between three months and 2.5 years. How long it takes depends, among other things, on the type of acute leukemia you have.

Sometimes the treatment needs to start before there is an answer to all samples. Then the treatment is adjusted when the answers are clear.

Preparation before treatment starts

Before treatment can begin, some preparation is required. For example, you need either a  subcutaneous venous port or a  central venous catheter, CVK. They make it easier to submit samples and receive treatment. They are operated under the skin of the chest and then go into a large blood vessel.

Your heart and lungs are examined to see that you have no infection and to be able to customize the treatment you should receive. Teeth may also need to be examined to reduce the risk of infection.

Drugs remove cancer

It is common for the treatment to start with high doses of cytostatic drugs, which are a form of the cell-inhibitory drug. The cytostatics you get in repeated cures. A cure is given as a drip for several days. Then you need to be taken to hospital waiting for the healthy bone marrow to recover.

It is common to have to be in the hospital for about four to five weeks but it can vary. Then a new bone marrow test is taken which can show if the treatment has removed the leukemia cells and the blood can again be formed properly. It is possible that you can be discharged from the hospital for a short time while waiting for the test answer.

Treatment usually needs to continue even if all signs of the disease are gone. The purpose is to reduce the risk of relapse. You get more cytostatic drugs in cures. The cures are interrupted with a pause in the treatment. This part of the treatment can last from a few months to over two years. The most common thing is that you are in the hospital while a cure is in progress. In between, you can be home but you need to be admitted to the hospital if you get an infection.

You need different treatment at the same time

You need supportive treatment to cope with the intensive treatment with cytostatic drugs. Here are some examples of such supportive treatment:

  • Medicines that prevent nausea and infections.
  • Blood transfusions if you have low blood levels.
  • Antibiotics if you get infections.
  • Nutrition if you get hard to eat.

The weeks after the first, intensive treatment can feel laborious. You may need blood transfusions almost every day. You may need care in isolation rooms to protect against infections.

Relatives and friends can greet

You who are close relatives or friends can greet you even if the sick person is cared for in isolation rooms. The visits can make it easier for those who are ill to cope with the hospital stay. It is important that you who greet you to follow the special routines that apply at the hospital for, among other things, hand hygiene and food. Wait with the visit if you are cold or have any other infection.

Stem cell transplantation

You may need a  stem cell transplant if the risk is high that you will have a relapse. The treatment usually takes four to five weeks. During that time, you are hospitalized. The body must be strong enough to withstand the strain of a stem cell transplant. There is also a great risk of complications, both during hospital time and in the coming months after stem cell transplantation. Therefore, you may not be able to receive the treatment.

If cancer comes back – relapse

You may be treated again if you have relapses. Relapse means that the disease returns. What treatment you can receive depends, among other things, on what type of leukemia you have, what treatment you have received before and how much your body can handle.

Treatment that relieves the symptoms

The only thing that can cure acute leukemia is an intensive treatment. Sometimes there is too much risk with such treatment. It depends on how you feel and whether your body is able to cope. For some, it may be better to refrain from the very demanding treatment and instead receive treatment that reduces the symptoms of leukemia, even if you cannot get rid of the disease. It is called palliative care. Then you can, for example, get cytostatic drugs in lower doses, blood transfusions, and treatment for infections.

Treatment of Chronic Lymphatic Leukemia, KLL

Chronic lymphocytic leukemia, KLL, can be expressed in various ways. Some people already have symptoms when the disease is discovered. Then treatment is needed immediately.

Many are without symptoms. Then no treatment is needed but you may go for regular checks and blood tests a few times a year. In this way, the doctor can monitor how the disease develops and determine when you need to start receiving treatment.

Cytostatic and monoclonal antibodies

There are many different medicines for KLL. It is common for cytostatic drugs to be combined with drugs called monoclonal antibodies. It is a form of the targeted drug. This means that they look up and attach themselves to cancer cells so that the cancer cells break down and die.

You can get monoclonal antibodies as a drip or as syringes. The treatment does not remove the disease but can make you trouble-free for several years.

At the beginning of the treatment with monoclonal antibodies, you may get a little fever, chills, muscle aches or palpitations. Cytostatic drugs can, among other things, make you feel sick. There are medicines that can help you avoid side effects.

You may get infections after treatment with cytostatics and monoclonal antibodies, but it is quite uncommon and treatment is available.

Other drug treatments

There are drugs that contain small molecules. They block the signaling pathways of the cancer cells. The treatment can be used as an alternative to cytostatic drugs. Small molecules can be obtained as a single treatment or in combination with, for example, monoclonal antibodies.

If you get symptoms of leukemia again

You may be treated again if the symptoms return. Contact a doctor as soon as possible if you experience any problems that you think may be related to leukemia. This applies both if the treatment is completed and if it is still ongoing.

Contact a health care center if the inconvenience comes after a long time after the treatment and the contact with a special doctor or contact nurse is over.

Treatment of chronic myeloid leukemia, KML

The goal of the treatment is to greatly reduce the number of leukemia cells and to prevent the disease from moving into a more severe form, which may be reminiscent of acute leukemia. You usually need treatment for the rest of your life.

Tyrosine kinase inhibitors reduce the number of leukemia cells

Chronic myeloid leukemia, KML, means that there has been a special change in cells in the bone marrow. The change is found in the nuclei of the cells and is called the Philadelphia chromosome. The chromosome contains the code for a protein that allows leukemia cells to form. The protein is called tyrosine kinase. It can be blocked with drugs called tyrosine kinase inhibitors, TKI. There are various tyrosine kinase inhibitors. You take them as tablets every day.

You may need preparatory treatment before taking tyrosine kinase inhibitors. For example, you may get tablets with mild cytostatic drugs if you have very white blood cells in your blood.

Tyrosine kinase inhibitors can cause side effects – then you can switch

For most people, the treatment with tyrosine kinase inhibitors means that they can live almost as usual without the inconvenience of the disease or treatment. But you can usually not stop treatment because the disease can be exacerbated then.

Tyrosine kinase inhibitors can cause you to have lowered blood levels, swelling or feeling unwell. There are several different types of tyrosine kinase inhibitors and you can therefore usually get a variety that works well for you.

Stem cell transplant is sometimes needed

It is rare, but sometimes tyrosine kinase inhibitors do not help. Then you may need a stem cell transplant. It can make you get rid of cancer altogether. The treatment usually takes four to five weeks. During that time, you are hospitalized.

The body must be strong enough to withstand the strain of a stem cell transplant. There is also a great risk of complications, both during hospital time and in the coming months after stem cell transplantation.

For some, it may be better to refrain from the demanding treatment and instead receive treatment that relieves the symptoms. It is called palliative care. For example, you may receive cytostatics at lower doses, blood transfusions, and treatment for infections.

Pregnancy and breastfeeding

The treatment can affect fertility, for example, if you have had cytostatic drugs or if you have had a stem cell transplant. Talk to your doctor before treatment if you want to freeze sperm or meet a gynecologist to discuss what other options may be available to get pregnant.

Protect yourself from pregnancy while receiving treatment for cancer. You can be fertile even though fertility is usually impaired. Cancer treatment can be harmful to a fetus.

Wait a while to get pregnant after completing cancer treatment. Talk to your doctor.

You need to stop treatment if you have KML and want to get pregnant. Then you have to go on tighter medical examinations and start the treatment again as soon as appropriate. Sometimes it is possible to use other medicines in the meantime.

Talk to your doctor if you have KML and want to use your sperm in a pregnancy. It can go without you having to stop treatment. It depends on what treatment you receive.

Also, talk to your doctor if you have leukemia and want to breastfeed.

So, life is affected by leukemia

Getting leukemia usually means that life is affected in different ways. How much the disease changes every day depends, among other things, on the type of leukemia you have and what treatment you receive.

After acute leukemia, recovery is needed

Life is greatly affected if you are treated for acute leukemia. During the first part of the treatment, you need to be on sick leave if you are entitled to it.

For some, it may work, for example, to start working or studying again part-time, while the latter parts of the treatment are still ongoing. But it varies from person to person.

It is common to be tired, have decreased fitness and increased susceptibility to infections. Then you need time for recovery.

Often, you can start living as usual again a few months after treatment, with for example family, work or school.

Sometimes the recovery takes longer, for example, if you have had a stem cell transplant.

You go on regular checks, maybe every month for the first time. Then you can walk less often. The checks continue for a long time. This depends, among other things, on the type of treatment you have received.

Important to exercise

It is important that you exercise energy and fitness. One suggestion is to start with walks and things you do every day. As you get stronger you can continue with more intense physical exercise. Do what you like and do yourself.

Chronic leukemia affects life differently

Chronic leukemia can cause symptoms or side effects that make you less able to cope. Then you may need to be on sick leave if you are entitled to it. But it varies from person to person. Some may live as usual despite leukemia. You need to go for regular life checks.

What happens in the body?

Leukemia means that cancer has arisen in cells that will become different blood cells.

The blood cells are formed in the bone marrow

The blood cells are formed in the red bone marrow. Redbone marrow is found in various parts of the skeleton, for example in the upper leg, sternum, vertebrae, pelvic bone and femur. Every second, millions of new blood cells are ready to be sent out into the bloodstream.

There are three different types of blood cells, which have different tasks:

  • The red blood cells carry oxygen from the lungs to all parts of the body.
  • The white blood cells are an important part of the immune system and protect against infections by bacteria and viruses.
  • The platelets are needed for the blood to solidify and thus stop bleeding. Platelets are also called platelets.

The blood cells develop from stem cells

The blood cells develop from cells called stem cells. From the beginning, a stem cell has the ability to form all types of blood cells. Gradually, the blood cells mature and become more specialized, until they are ready to enter the bloodstream.

Myeloid and lymphatic origin cells

The stem cell gradually develops into blood cells that are either myeloid or lymphatic.

The myeloid origin cells should mature into different types of white blood cells that are important for, for example, the defense against bacteria. They should also turn into red blood cells and platelets.

The lymphatic origin cells should mature into the white blood cells called lymphocytes. They are found both in the lymph nodes and in the blood and can, among other things, form antibodies that prevent viruses from attacking the body.

Leukemia changes blood formation

Leukemia prevents the blood from forming properly. Some of the cells that are to mature into blood cells stop in development and become cancer cells. They are called leukemia cells. Most often, it is white blood cells that develop into leukemia cells instead. They take over space in the bone marrow so that there is a lack of all kinds of blood cells. Leukemia cells can then enter the bloodstream, and also reach different organs such as the lymph nodes, the spleen, and the liver.

What is Leukemia?

The causes of leukemia are unknown. Some things seem to increase the risk of getting leukemia, such as ionizing radiation. Some blood disorders or congenital gene changes may also involve an increased risk of leukemia.

It is rare for leukemia to be hereditary. Most people with leukemia have the disease without a relative.

Getting a sick message

You can respond in many ways to a cancer message. It is common to need a lot 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 can get support from several directions

Many hospitals have special nurses known as contact nurses. They are particularly accessible to the sick and related. The contact nurse can provide support and also help with various practical things. 

You can also contact for example the Cancer Foundation or Cancer Counseling. Here you will find contact information and can read more about how you can get different types of help 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. You can get help with what you have to say if you want to and can tell the child yourself. Often it is good to make children as involved as possible, no matter how old they are. But you may need to customize the information and not have to tell everything. It may be good to start with the child’s own questions.

You have to be involved and influence

You have the right to be involved in your care as far as 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. That way, you can help decide which treatment is best for you.

You can make a care plan together with the contact nurse, the doctor and other staff. The care plan should contain information that is important to you, such as contact information and how to get the rehabilitation you need. Here you can read more about the contact nurse and the care plan.

You can get a new medical assessment

You may get a  new medical assessment from another doctor if you have a life-threatening or particularly serious illness. Obtaining another doctor’s assessment can help you, for example, if you are unsure of which treatment or treatment is best for you. 

For those of you who are related

It can feel difficult to be close to someone who has a disease. It is common to want to support while you yourself have a strong concern and feel bad.

If you have people close to you, they can be a support. Often it will be easier for them to help you if you tell them how it feels. 

You can get relief if you help take care of or support the sick person. You can also get support, for example in the form of calls or help with practical things. Talk to the contact nurse if you are close and need support.

Support for those who are ill or related

Through the Blood Cancer Association, you can get in touch with others who have experience of being ill or related.

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