Care pathway for chronic lymphocytic leukemia

Chronic lymphocytic leukemia (CLL) is a slowly progressing malignant blood disorder in which the number of white blood cells called lymphocytes in the blood increases.

Chronic lymphocytic leukemia is most often diagnosed by chance when examining a patient’s complete blood count. The most common abnormal findings are enlarged lymph nodes in the neck, armpits or groin areas. The spleen may also be enlarged.

In the early stages, the disease is often asymptomatic. In advanced chronic lymphocytic leukemia, weight loss, abnormal sweating and increased body temperature may occur.

The initial examinations for chronic lymphocytic leukemia are performed at a health center, in occupational health care, or at a private medical clinic.  

If an abnormal examination result or finding is made, the physician will make a referral based on your place of residence to us at HUS or to the Helsinki Internal Medicine Outpatient Clinic.

The referring physician will issue a referral based on your place of residence

• to the internal medicine outpatient clinic at Jorvi, Peijas, Raseborg, Malmi, or Lohja Hospital, or
• to the hematology outpatient clinic at the Comprehensive Cancer Center, Hyvinkää Hospital, or Porvoo Hospital.

A specialist will plan the necessary additional examinations based on your referral information.

You will be informed of the time of the examinations and the appointment by letter. You can also find this information in the Maisa Portal.

We will plan the blood sampling associated with your disease and its risk factors as well as the necessary imaging examinations. In the diagnostic stage, it is not necessary to do a bone marrow examination, but we often perform one before starting treatment.

We will book you a physician’s appointment approximately in one month after receiving the referral so that all examination results are available during the visit for confirming your diagnosis and drawing up a follow-up or treatment plan. You may bring a family member to the appointment if you wish.

At the appointment, the physician will ask you about your other illnesses and symptoms related to the disease. Your physician will examine you by listening to your heart and breathing sounds and palpating your stomach and lymph node areas (neck, axillary, and inguinal regions). After the examinations, you will have a discussions about the diagnosis and follow-up plan with your physician.

If your blood disorder requires treatment, you will meet with a nurse before starting treatment to receive guidance on the medication regimen you will be starting.

After the diagnosis has been confirmed, it is recommended that patients take the pneumococcal vaccine, as chronic lymphocytic leukemia can weaken the immune system already in the early stages of the disease.

Treatment of chronic lymphocytic leukemia begins once the generally accepted criteria for initiating treatment are met.

Chronic lymphocytic leukemia is treated either with long-term oral medication or with various combinations of two medicines as a short-term treatment.

A multiprofessional treatment team is in charge of the treatment of chronic lymphocytic leukemia. You can reach your treatment team in the Maisa Portal and by phone. You will find the contact information for the unit treating you on the invitation letter.

• The Comprehensive Cancer Center helpline at 09 471 74900 is open Monday through Friday from 7:30 a.m. to 4:00 p.m.
• If your condition deteriorates suddenly or your fever rises above 38 degrees Celsius, contact the 24-hour emergency Medical Helpline at 116 117 (toll-free) or the nearest hospital with on-call services.
• In an emergency, always call 112.

There is no curative drug treatment for chronic lymphocytic leukemia. On the other hand, a blood disorder does not always require treatment.

If you are in good health, the goal of treatment is to achieve remission – a state in which there are no detectable signs of the disease and it does not cause any symptoms. This has been shown to prolong the time when the disease does not progress and to increase overall life expectancy in patients.

We monitor the effectiveness of the treatment with regular blood tests. You will receive instructions and updates regarding your treatment by mail, phone, or during your appointments at the clinic. During the follow-up visit, the physician will palpate the lymph node areas and the spleen. In addition, we will perform imaging studies as needed.

During your treatment, we recommend that you live as normal a life as possible. It is recommended that you exercise at a level you can comfortably maintain. There is no need to restrict your diet.

Advanced chronic lymphocytic leukemia may be accompanied by fatigue, unintentional weight loss, and severe night sweats. Enlarged lymph nodes or the spleen may cause pressure. These symptoms are an indication for starting treatment for a blood disorder, and one of the goals of treatment is to achieve absence of symptoms.

In the early stages of treatment, you may experience fatigue and other side effects, depending on the medication. As treatment progresses, you will usually start to feel better. Medical treatments can lower your immunity, so we recommend getting seasonal vaccinations (for influenza and COVID-19) in accordance with THL guidelines.

If it is expected that your disease will not progress for a long time after treatment, your follow-up will continue in primary healthcare or occupational healthcare.

If a transfer is made to symptomatic treatment, a physician will make a referral to a palliative unit and/or home hospital care.