Care pathway for chronic lymphocytic leukemia

In chronic lymphocytic leukemia (CLL), the number of white blood cells called lymphocytes increases in the blood. 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 advanced chronic lymphocytic leukemia, weight loss, abnormal sweating and increased body temperature may occur.

The initial examinations may be performed at a health center, in occupational health care, or at a private clinic.  

If an abnormal examination result or finding is made, a physician will make a referral to HUS.

Your physician refers you to an internal medicine outpatient clinic at the Jorvi, Peijas, Helsinki Laakso, Malmi, or Lohja Hospital, or to a hematology outpatient clinic at the Comprehensive Cancer Center, Hyvinkää Hospital, or Porvoo Hospital, depending on your place of residence. Our specialist will plan the necessary additional examinations based on your referral.  

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

We will plan blood sampling related to the disease and its associated 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 your 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 treatment plan. You may bring a loved one to the appointment if you wish.

At the appointment, we will ask you about your other illnesses and symptoms related to your disease. Your physician will examine you by listening to your heart and breathing sounds and palpating your stomach. After the examinations, you will discuss the diagnosis and treatment plan for your hematological disease with your physician.  

After the physician’s appointment, you will meet the nurse at the outpatient clinic either on the same day or within a few weeks. The nurse will go through matters related to your blood disorder with you and you will receive guidance regarding the medication you will be starting. 

We recommend that our patients take the pneumococcal vaccine after the diagnosis has been confirmed, as chronic lymphocytic leukemia can weaken the immune system already in the early stages of the disease.

We will start treatment of chronic lymphocytic leukemia when generally accepted criteria for initiation of treatment are met. These criteria include worsening anemia or platelet deficiency, a rapid increase in the number of lymphocytes in the blood, general symptoms (weight loss, night sweats or temperature without infection), and symptoms caused by enlarged lymph nodes or spleen.

We use different combinations of two or three drugs in our treatment. The medication is in the form of infusions or self-administered tablets.

There is no curative drug treatment for chronic lymphocytic leukemia. If a patient is in good physical condition, we aim for remission, i.e. a situation where no signs of the disease are visible in the blood sample. This has been shown to prolong the time when the disease does not progress and to increase overall life expectancy in patients.  

We monitor your treatment response with blood samples taken during the treatments approximately every month. Follow-up takes place remotely by phone and at  appointment visits. At the follow-up appointment, we will palpate the lymph node areas and spleen and, at our discretion, perform bone marrow and/or imaging examinations.  

Good palliative care and psychosocial support are an integral part of cancer treatment. The Palliative Care Center provides help in the stressful life situation caused by the illness or cancer treatments. We help treat difficult symptoms and offer conversational support. 

A decision on palliative, i.e. symptomatic, treatment is made when the focus of your treatment shifts from slowing down the progression of cancer to managing the symptoms. In this case, treatment aims to alleviate symptoms and, as far as possible, to ensure a good and active life with the illness until death. Typically, at this stage, your care responsibility is transferred to the palliative care unit or to the palliative outpatient clinic or a hospital-at-home unit in your area.

If it is expected that your disease will not progress for a long time after your treatment, your follow-up will continue in primary health care or occupational health care. Follow-up is carried out in accordance with our follow-up recommendation. 

If you will transfer to palliative care, we will make a referral to a palliative unit and/or hospital-at-home unit.