Symptoms
CLL usually develops very slowly, so there may be no symptoms in the early stages.
In fact, many people are diagnosed by accident, when they have a blood test that shows abnormal levels of white blood cells.
The most common symptoms of CLL are:
- Aching bones and joints
- Getting infections more often, and recovering more slowly from infections
- Headaches
- Night sweats and fever
- Shortness of breath
- Swelling of your spleen and / or tenderness on the left side of your abdomen, caused by an enlarged spleen
- Swollen lymph glands
- Tiredness and looking pale
- Unexplained bruising or bleeding
- Weight loss / loss of appetite
Some may experience a number of symptoms, but others may only experience one or two. This is especially important, as for some patients swollen lymph nodes may be the only notable symptom at the time of diagnosis.
Diagnosis
A diagnosis of CLL is usually evident from the results of a blood cell count. A person with CLL will have increased number of lymphocytes.
Bone marrow biopsy/aspirate
Generally this test is not needed to diagnose CLL but is recommended before treatment begins as it gives your doctor some valuable information on how best to treat your disease.
The FISH (Fluorescent in situ hybridisation) Test
A specimen of your blood or bone marrow will be used to make a microscope slide with a thin, single layer of cells.
During the FISH test process, certain genetic elements of the cells are “stained” with chemicals that make the DNA glow in different colours when special wavelengths of light are shone on it.
FISH can help identify specific genetic defects by looking at where the colours are, to determine if they are in the wrong locations, relative to other colour markers, are there too many times (more than twice) or not at all (a chromosome segment is deleted entirely).
The location of the FISH colour markers can help your oncologist/haematologist determine a prognosis and possibly treatment for your CLL.
Chromosomal information
Chromosomal changes are detected with FISH test and this important information can determine the best treatment strategy; e.g. patients with Del(17p) tend to have higher risk disease and usually do not respond as well to standard initial therapy. Their CLL treatment needs to be approached in a different manner. These patients respond well to the new novel therapies.
There are a number of sources of information and blogs about the FISH test that you can review, such as that run by Dr. Jeff Sharman a haematologist oncologist from the Willamette Valley Cancer Institute in the U.S. (to visit Jeff Sharman’s blog about FISH – Click Here)
Mutated vs. Unmutated
It is important for patients to know whether their CLL is mutated or unmutated . This test should be carried out before treatment commences. Some doctors like to test for this early on.
Generally patients who are unmutated have shorter remission from chemotherapy but developments in newer novel treatments are changing this. Mutated patients in general respond better to treatments.
Following Diagnosis
Hearing the words ‘leukaemia’ and ‘cancer’ can be a huge shock.
After diagnosis it is common to feel:
- Upset and overwhelmed by emotions
- Confused by all the information being given
- Worried about what will happen next
- Scared about the future
It is important that you take support from those who can offer it.
See our Support section for more information.