Survival for hairy cell leukaemia

No one can tell you exactly how long you will live

Below are general statistics based on large groups of people. Remember, they can’t tell you what will happen in your individual case.

Survival statistics for hairy cell leukaemia

No UK-wide statistics are available for hairy cell leukaemia survival. Statistics are available from one area of England. 

Generally for people with hairy cell leukaemia:

• around 95 out of every 100 (around 95%) will survive their leukaemia for 5 years or more after they are diagnosed

Remission

Hairy cell leukaemia usually develops slowly. It can be kept under control for many years with treatment. You may hear these periods called remission. Remission is when the disease is not active. You don't have symptoms and it doesn't show up in your blood samples.

You might have more treatment if your leukaemia comes back (relapses). It can be possible to have a second remission.

The statistics below are from a French study. This looked at 279 patients with hairy cell leukaemia. The researchers looked at their response to treatment and survival. 

The researchers measured the median relapse free survival. This means the length of time from starting treatment to the point at which treatment stopped working (relapse or death) in half of the patients in the study. The researchers found:

• the median relapse free survival after first line treatment was 11 years

• the median relapse free survival after second line treatment was around 7 years

(Your first treatment is called first line treatment. The next lot of treatment you have when you relapse is called second line treatment).

The researchers looked at the length of time from diagnosis to the point at which half of the patients with hairy cell leukaemia were still alive. This is called median survival. The researchers found:

• the median survival was 27 years

The researchers looked at the number (proportion) of people who relapsed at 1,5, and 10 years. They found:

• around 5 out of 100 people (around 5%) relapsed within 1 year of starting treatment

• around 20 out of 100 people (around 20%) relapsed within 5 years of starting treatment

• around 40 out of 100 people (around 40%) relapsed within 10 years of starting treatment

What affects survival

Several factors can affect your outlook (prognosis). These are called prognostic factors. 

These factors include having:

• a very low red blood cell (haemoglobin), white blood cell (neutrophil) or platelet count

• swollen lymph nodes in your tummy (abdomen) –  the doctors call this lymphadenopathy

• changes to the TP53 gene or not having changes to the IGHV gene

People who have a complete response to treatment do better than people who have a partial response. In hairy cell leukaemia, a complete response is when all signs of the leukaemia have disappeared. A partial response means there are still some abnormal leukaemia cells or other signs of the leukaemia.

About these statistics

The terms 1 year survival and 5 year survival don't mean that you will only live for 1 or 5 years.

The NHS, other health organisations, and researchers collect information. They record what happens to people with cancer in the years after their diagnosis. 5 years is a common time point to measure survival. But some people live much longer than this.

5 year survival is the number of people who have not died from their cancer within 5 years after diagnosis.