# Symptoms and stages of chronic lymphocytic leukemia
Early stage (diagnosis to first symptoms)
In the early stage, many patients have no complaints at all. The disease is often discovered by chance during a routine examination or blood test for something else. This can last months or even years.
**Possible symptoms in this stage:**
- No symptoms (so-called 'watch and wait')
- Sometimes it is discovered that the spleen or liver has become slightly enlarged, without this being noticeable
- The lymph nodes in the neck, armpit or groin may become palpable, but often without pain
**What this means for daily life: **
For many people, nothing changes initially. Some may feel normal and continue their normal routine. However, it can be psychologically stressful to know you have the diagnosis without feeling sick yourself.
**Figures about this phase: **
The median time before treatment is needed varies greatly. Some patients need no treatment for years, others for just a few months. This depends on the characteristics of the disease and how quickly the disease progresses. Individual differences are very large.
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Active stage without treatment
When the numbers of diseased cells rise or symptoms develop, the doctor may decide to start treatment. Sometimes this happens gradually, sometimes more quickly.
**Possible complaints in this phase: **
- Tired, fatigued feeling that does not clear up with rest
- Unexplained weight loss (sometimes several kilos per month)
- Night sweats (sometimes so severe that your clothing and sheets become drenched)
- Fever without clear infection
- Enlarged lymph nodes in neck, armpit or groin, sometimes palpable as lumps
- Pain or feeling of fullness in the left upper part of the abdomen (where the spleen is), especially after eating
- Bruises or nosebleeds (because there are fewer platelets)
- Repeated infections, because the immune system is weakened
- Sadness or anxiety because of the diagnosis
**What this means for daily life: **
The fatigue can be considerable and can limit work, hobbies and social activities. Night sweats disrupt sleep. Infections can occur suddenly and require medical help. Many patients need to go to appointments more frequently for blood tests and examinations.
**Figures about this phase: **
This is very individual. Some patients remain stable for years, others see faster changes. The median survival of patients with chronic lymphocytic leukemia is 10–15 years, but this is an average across large groups with different risk factors; many patients live longer, others have a shorter disease course. These figures say nothing about one individual.
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Treatment phase: start of therapy
When it becomes clear that treatment is needed, doctors usually start with one or more types of medications. In recent years, many new treatment options have become available.
**Possible experiences and side effects:**
- Infusions (injections via the blood) given weekly or monthly
- Tablets taken daily
- Fatigue and malaise in the first weeks to months of treatment
- Infections can occur more frequently, because certain treatments further suppress the immune system
- Allergic reactions (redness, itching, shortness of breath) with some infusions, especially at the first treatment
- Nausea, diarrhea or constipation
- Nerve pain or tingling in hands and feet (neuropathy)
- Skin reactions (dry skin, rash, blistering)
- Heart palpitations or irregular heartbeat, which should be monitored closely
- With certain medications: increased risk of certain fungal infections
**What this means for daily life: **
Many patients work through treatment, but some must adjust their work schedule. Hospital visits can be frequent. Infections sometimes require admission. It is important to take good care of yourself and contact your doctor quickly if you experience unusual symptoms. Many patients experience fear and uncertainty, especially at the beginning of treatment.
**Figures about this phase: **
Response to treatment varies. Some patients achieve complete remission (no visible disease in blood tests), others partial remission. How long the disease remains in remission is highly individual and depends on many factors. Modern treatments have improved outcomes, but exact percentages and duration differ per patient and per treatment strategy.
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Period of stabilization or remission
After treatment, patients can enter remission, meaning that diseased cells decrease greatly or are no longer detectable in blood tests.
**Possible symptoms:**
- Improvement of fatigue and night sweats
- Lymph nodes become smaller
- Enlarged spleen may return to normal size
- Fewer infectious episodes
- Blood values normalize (more red blood cells, more platelets)
- Psychological relief, although many patients remain cautious
**What this means for daily life: **
Many patients feel stronger again and can resume more of their normal activities. However, regular follow-up appointments and blood tests remain necessary to monitor whether the disease stays under control. The knowledge that the disease could return can remain psychologically present.
**Figures about this phase: **
The duration of remission is highly individual. Some patients remain stable for years without needing new treatment. Others see the disease increase again after several months to years. This depends on many factors, including the type of disease and how well it responded to initial treatment.
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Return or progression (relapse)
In some patients, we see that after improvement the disease begins to increase again, either because the initial treatment didn't work well, or after a period of remission has passed.
**Possible symptoms that can return:**
- Increasing tiredness
- Night sweats
- Returned or enlarged lymph nodes
- Rising numbers of diseased cells in blood tests
- Infections may occur more frequently
- Bruising or bleeding tendencies can return
**What this means for daily life: **
Many patients experience disappointment or fear when this happens. Starting treatment again can be physically and emotionally burdensome. The doctor can repeat the same treatment, but more often a different type of medication is chosen. Regular hospital visits are needed again.
**Figures about this phase: **
How many patients experience a return and how quickly it happens varies greatly. Some patients have growth periods of months to years, others shorter. The response to second or further treatments depends on many factors and differs per person.
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Advanced or refractory phase
In a small portion of patients, the disease responds less well to standard treatments, or returns very quickly. This is called refractory.
**Possible complaints: **
- Persistent or worsening fatigue despite treatment
- Ongoing infections due to weakened immune system
- Bruising, nosebleeds or severe bleeding
- Enlarged organs that don't recover well
- Possible rare complication: transformation to more aggressive form (Richter transformation), with fever, severe pain and rapid deterioration
- Side effects of treatment can become stronger
**What this means for daily life: **
Patients may spend more time in hospital. The fatigue and infectious complications can be very limiting. The medical team may consider new, experimental treatments. Focus may shift to managing symptoms and quality of life. Many patients need support from psychologists, social workers and loved ones.
**Figures about this phase: **
For patients with refractory disease, the disease course is often shorter than for others, but this is highly individual. New treatment options are continually being researched. The percentage of patients reaching this phase is relatively small.
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When to contact your healthcare provider
You contact your doctor or hospital if you:
- Suddenly develop high fever (above 38.5 °C) or fever that lasts more than a few days
- Experience severe or unexplained bleeding (many bruises, blood in urine or stool, significant nosebleed)
- Have serious infections (lungs, urinary tract, skin)
- Experience severe, unexpected pain
- Suddenly feel much more fatigued or feel very unwell
- Experience shortness of breath
- Have persistent nerve pain, skin problems or other side effects from treatment
- Have any questions or concerns
_This information never replaces a doctor's judgment. Always discuss your situation with your own healthcare provider._