Living with and beyond cancer

Living with chronic or slow growing cancers of the blood

Different types of cancer behave in different ways, and among those that affect white blood cells – lymphomas and leukaemias – there are subtypes that grow much more slowly than others. These are referred to as ‘chronic’, ‘indolent’ or ‘low grade’ haematological cancers. Although drug treatment and radiotherapy can be very effective in indolent haematological cancers, most patients eventually relapse and require further treatment. These cancers are therefore considered to be chronic, relapsing conditions that can be managed over long periods of time. Some people we spoke to had been living with either chronic myeloid leukaemia (CML), chronic lymphocytic leukaemia (CLL), or low grade non-Hodgkin’s lymphoma (NHL) for many years.
 
In many cases of CLL or low grade NHL, people have no or only mild symptoms at first, so treatment is not required; instead they are monitored closely until their disease progresses to a stage where treatment is needed. In some people this may never happen or it may take many years to happen. There’s no advantage in starting treatment early because it can introduce unpleasant side effects without offering any benefit. A man and a woman had been living with CLL for 6 and 7 years respectively without treatment; the man said the possibility of treatment had never been mentioned to him.
Other people we spoke to had followed a period of monitoring with one or more episodes of treatment. The decision to begin treatment is based on the levels of the various types of cells in the blood, the severity of symptoms and the extent to which they interfere with normal life. Symptoms may include: tiredness or fatigue, frequent infections, unusual bleeding or bruising, swollen lymph nodes, weight loss, fever, joint aches and pains, breathlessness, night sweats, and increased sensitivity to insect bites and stings.
The first treatment for CLL and some types of low grade NHLs may consist of mild chemotherapy that can be taken as tablets at home. In a typical course of treatment several tablets a day are taken for the first few days in each month, with the rest of the month off to recover. Of those we interviewed most people started with one or more courses of chlorambucil, the mildest drug, and moved onto a combination of fludarabine and cyclophosphamide ('FluCy') if necessary or the next time they needed treatment.
Nowadays the treatment of choice for CLL is fludarabine and cyclophosphamide combined with an intravenous infusion (through a drip) of the biological therapy rituximab. This combination treatment is known as FCR. FCR may not be suitable for people with other health issues, who may be given chlorambucil instead. We have not yet interviewed anyone who had FCR. Newer drugs for the treatment of CLL are being developed which are proving to be very effective and safe.
 
As with many types of chemotherapy, other medicines are given at the same time to protect against side effects, such as nausea and infection. Some people experienced an adverse reaction to the anti-nausea drugs; Marilyn said she managed to counter the nausea caused by chlorambucil with acupressure wristbands and ginger biscuits.
Some people with low grade NHL were given other types of treatment. Some needed chemotherapy drugs that had to be given intravenously, others had radiotherapy directly to the area where the tumour was growing, e.g. the groin, chest and neck, or face. Biological or immunological therapies are increasingly used to treat NHL, one man had interferon injections administered at home by himself or his wife, and some people had antibody treatments called rituximab (Mabthera) and ibritumomab tixuetan (Zevalin) administered in hospital. Other people had a stem cell transplant using their own cells that had been harvested during a remission. One woman had a lymphoma surgically removed. A few people needed other kinds of supportive treatments such as blood transfusions or drainage of fluid from the lungs.
It is common for people with CLL and low grade NHL to have multiple episodes of treatment with remissions in between. The length of remission is extremely variable, ranging from a few months to ten years among the people we spoke to. During remission symptoms may gradually reappear and worsen over time, and some people we spoke to said that the illness restricted what they could do. Common strategies for coping with tiredness and other symptoms included planning periods of activity to avoid exhaustion, and resting or sleeping during the day. Beverley (Interview 68) found her tiredness was reduced when she gave up work due to unrelated health problems. Others said they just got on with what they had to do and took a rest when they could.
At the time we spoke to them, some people had recently finished a course of treatment and were waiting to find out whether it had worked. Others were in remission and having regular check-ups. Some knew that their white blood cells were increasing in number or were aware of symptoms, such as enlarged lymph nodes, and were expecting to have further treatment at some point because their disease was progressing. Beverley (Interview 68) said her specialist had mentioned the possibility of a stem cell transplant in the future, and her sisters had been tested as possible donors but none were a match so a suitable donor would be sought through a register if necessary. A woman with mantle cell lymphoma had her stem cells harvested in case they were needed in future, and her siblings were being tested as suitable donors. Others felt really well and were expecting a long remission.
Until relatively recently people diagnosed with chronic myeloid leukaemia (CML) had a significantly shortened life expectancy, but a new biological therapy called imatinib (Glivec) has revolutionised treatment for this type of leukaemia, enabling most people to remain symptom-free for an indefinite period. The drug is taken in tablet form and has few or only mild side effects. The people we spoke to who were taking this treatment were therefore enjoying a long remission. One said, “I have a pretty normal life; I pop four little tiny pills every night”.
CLL* - chronic lymphocytic leukaemia
CML* - chronic myeloid leukaemia
NHL* – non-Hodgkin’s lymphoma 



Last reviewed August 2015.
Last updated August 2015.


 

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