'Clinical Trials are the only way they will ever find a cure.' Read Lelia Duley's story
CLL stands for chronic lymphocytic leukemia and it’s the most common leukaemia that we see in the UK. Roughly 3000 patients are diagnosed a year in the UK, and it’s defined as chronic lymphocytic leukemia because it is chronic in nature. It generally has a slow onset, and it is lymphocytic because it affects the lymphocytes, which are a type of white blood cell. Those white blood cells are very useful for fighting viruses and infections, but in the case of CLL, the lymphocytes that are there are no longer effective. We see an accumulation of these abnormal lymphocytes in CLL, and that’s reflected in a high white blood cell count that wis seen when a patient has their blood test taken. We still don’t know what initiates or what starts off CLL. We know that there are certain risk factors for the disease. It is associated with white ethnicity and older age. The average age that we diagnose patients with CLL is actually around 70, 71. In a small proportion of patients, if we ask on the family history, we’ll find that there is a previous ancestor who has had CLL. The majority of patients that are diagnosed at an early stage actually may never need treatment in their lifetime however if you have been recently diagnosed it is very important to make sure you get vaccinated.
Symptoms & Diagnosis Of CLL
Chronic lymphocytic leukemia is often detected incidentally. Patients can go to see their GP for completely unrelated reasons, and they have a full blood count taken. Then this identifies that there is a raised lymphocyte count and the GP may repeat that full blood count several weeks down the line and see that that lymphocyte count is still raised. At that point they may refer to haematology clinic who will do the investigations and find that patients have this disease. This is the case for around 70% of patients. This can come as quite a shock at that point because they’re feeling very well.
Other patients develop symptoms and signs such as:
· Enlarged swollen lymph nodes
· Night sweats or weight loss
· A painful upper abdomen or upper tummy base due to an enlarged spleen and liver
· A history of serious infections.
Treatment For CLL
For patients that are diagnosed at an early stage, after evidence from several trials looking at conventional chemotherapy agents, there’s actually no benefit to treating patients with early-stage disease. They are the patients that are monitored by their consultants however it is important that patients with chronic lymphocytic leukemia get vaccinated to prevent infection as early as possible after diagnosis.
Recommend vaccines are:
· Previnar 13
· Pneumovax 23
· The annual flu vaccine
For patients with an accumulation of the lymphocytes in the bone marrow, this can inhibit the production of red blood cells making patients feel anaemic and susceptible to bleeding. This is generally treated with chemotherapy-based agents such as Rituximab.
For a small proportion of patients that have a genetic mutation which means they aren’t going to respond well to chemotherapy agents, they are treated with agents such as Ibrutinib or Venetoclax which can be very effective.
Side Effects From Treatment For CLL
Fatigue and risk of infection are a really big problems for patients with chronic lymphocytic leukemia and those risks are higher when patients are going through treatment.
For patients undergoing chemotheraphy the side-effects can be:
· Hair loss
Possible side effects from Ibrutinib:
· Raised bleeding tendency
· Atrial fibrillation
· High blood pressure
· Achy joints
Possible side-effects from Venetoclax:
· Reduction in kidney function
Clinical Trials For CLL
The main clinical trial available in the frontline setting in the UK currently is the FLARE trial, which is run by Professor Peter Hillman in Leeds as the chief investigator which is aiming to recruit just over 1,5000 patients. This trial is looking at all of the current treatment options for CLL and comparing their efficacy against each other. This will really guide treatment options in the future and tell clinicians which is the best use and in which situations.