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Frequently asked questions

Frequently asked questions

These are some of the questions posed by members at our conferences:

Can I get travel insurance?

Travel insurance for CLL patients

Having CLL means that you need to plan to get the right insurance. Travel insurance can be more expensive because insurance companies consider the risk that you are likely to make a claim.

However, it is important that you do have medical cover as part of your insurance, and you may be asked for detailed information regarding your CLL. This can sometimes be frustrating, and you may be refused cover by some companies. It is very rare, however, that you will not be able to find suitable cover, although it may be more expensive, and may impose restrictions.

Don’t be tempted to hide anything or you may not be fully covered, or even covered at all.

You may find it more difficult to get insurance cover to go to certain countries where medical costs are high, for example USA, Canada, China, Hong Kong and the Caribbean, and for countries with poor health systems such as parts of Africa.

You may be offered cover which excludes any pre-existing medical conditions, and you should be aware that you may not be covered for any illness that your CLL may be linked to. For example, your insurance company may argue that a heart condition could be a result of previous chemotherapy treatment.

If you have an existing travel insurance policy, you must tell your insurer that you have been diagnosed with CLL.

The following companies have been suggested by our members, based on their own experiences, and you may find them more helpful than some of the larger providers. They are listed in alphabetical order.

Please note that these are not our own recommendations, and we advise you to shop around for the best deal.

Avanti Travel Insurance
Specialists in pre-existing conditions and over 50s travel.

All Clear Insurance
All medical conditions. Any age. Any destination.

Good to Go Insurance
All medical conditions. Any age.

Insurancewith
Aims to provide affordable policies to travellers with serious medical conditions.

Insure Cancer
Specialists in providing cover for travellers with cancer.

Freedom Insurance
One of the first UK insurers to develop specialised cover for travellers with pre-existing conditions.

JD Travel Insurance
Tailormade cover for travellers with pre-existing conditions.

PJ Hayman (Free Spirit Travel Insurance)
Most conditions. No upper age limit.

Pulse Insurance
Specialise in difficult and declined cases.

Staysure
Medical travel insurance for over 50s.

World First
General insurer offering a range of options, including medical travel insurance.

What benefits are CLL patients entitled to?

When you are diagnosed with cancer, you are automatically entitled to the benefits available under the Equality Act (2010).

You may find that cancer has an impact on some of the practical aspects of your life. This may be because you have been unable to work for some time, and maybe your partner has had to take time out of work to care for you. Recovering from a financially difficult situation can be a challenging and complicated process. It may be important to know that under the Equality Act (2010), you automatically meet the disability definition from the day you are diagnosed with cancer.

This is a complicated area, and a very good summary of the rules can be found here from our sister charity Leukaemia Care.

Do I have to inform the DVLA if I have CLL?

It is not a requirement to inform the DVLA that you have CLL. However, there may be some provisos if you drive a certain category of vehicle like a bus, lorry, public service vehicle etc.

Does CLL cause fatigue?

Many patients report extreme fatigue with CLL, and it’s an area that is too often ignored, and it can in some cases be very debilitating. It is important to say, however, that every patient is different, and also at different stages of the disease, and fatigue does not affect everyone equally.

Can I live a normal life with CLL?

We encourage people to live as normal a life as possible with CLL, but this does vary on whether you are on watch and wait, in treatment, or have fatigue. However, many patients have a full and enjoyable life after diagnosis and keep active. Our slogan is: ‘Live well with CLL’ and many patients can achieve this.

Will my CLL get worse?

CLL is a chronic disease, which means it usually takes time to develop, sometimes quite a long time, before treatment is considered. Your CLL specialist doctor will monitor your blood results regularly to see how your CLL is progressing and you can ask to see the results and also how things are going.

Am I more at risk of infections because of my CLL?

The short answer is that, as a CLL patient you at a higher risk of infections, because your immune system is weakened. This means that you are not able to resist infections so well as someone with a normal immune system. It is important that have the vaccinations as recommended elsewhere on this site (see ‘Vaccinations’) and try to keep away from anyone with colds, ‘flu or other infections. Keep your hands clean and, where possible, avoid crowded places.

Can I exercise with CLL?

It’s a good idea to exercise normally or, perhaps, even increase your daily/weekly exercise, with the agreement of your consultant. It is likely that fitter patients may cope with treatment better when it becomes necessary. Even if you suffer from fatigue, light exercise can help, although you may find it more difficult.

Glossary of terms used in CLL

These are a few of the common terms that you may encounter. It is not intended to be exhaustive but is regularly updated:

Anaemia

A condition where the number of red blood cells is below the normal range. The most common symptoms associated with anaemia include fatigue, weakness and shortage of breath. In extreme cases a blood transfusion may be given.

Antibodies

Antibodies are proteins which help fight infections in your body. Your lymphocytes (white blood cells) produce these naturally but you can also be treated for CLL using antibodies that are created in a laboratory. These are called monoclonal antibodies.

Axilla (axillary)

Refers to the area under the arm (armpit). Often used to describe lymph nodes in this position.

B lymphocyte or B cell

A type of white blood cell normally involved in producing antibodies to fight infection. CLL is a cancer of these cells.

Biopsy

The removal of a small piece of tissue for examination under a microscope.

Blood count, full blood count or FBC

A blood test that counts the different types of cells in your blood.

Bone Marrow

The spongy material inside bones that produces red blood cells, white blood cells and platelets.

Bone marrow biopsy and aspiration

A routine test to see whether or how much cancer is present in the bone marrow. A needle is inserted into the bone marrow, usually in the hip area, to withdraw a sample for analysis.

Chemotherapy

Treatment using anti-cancer drugs; it can be a single drug or a combination of drugs. Chemotherapy is used to kill cells or stop them growing and dividing. Although it’s aimed at the cancer cells, the treatment also affects normal cells which divide quickly, such as those in the hair and gut. A usual treatment for younger CLL patients is a combination of Fludarabine, Cyclophosphamide and Rituximab (FCR) although there are others that may be used, depending on the patient.

Clinical nurse specialist

A qualified nurse who specialises in a particular clinical area. Some deal with all blood cancers while others may specialise in myeloma, lymphoma or another specific area. Your nurse specialist can provide information and expert advice about your condition and treatment.

Clinical trial

A planned medical research study involving patients. They can be small trials involving only a few patients or large national trials. Clinical trials are always aimed at improving treatments and reducing any side effects they cause. You will never be treated on a clinical trial without detailed explanation of what is involved and your written consent to take part.

Cytogenetics

The study of the structure of chromosomes. Cytogenetic tests (or FISH tests) are carried out on samples of blood and bone marrow taken from leukaemia patients. They aim to find any changes which could be linked to the disease. They can also help doctors to decide on the treatment you’ll have.

Oedema

Swelling caused by excessive amounts of body fluid.

Febrile neutropenia/Neutropenia

Neutropenia is when a particular type of white blood cell (the neutrophil) is very low. Neutropenia increases the risk of infection. Febrile neutropenia is when you have neutropenia and a fever. This may indicate that you have an infection and you will need immediate medical review.

Fatigue

Fatigue is a feeling of extreme tiredness which doesn’t go away after rest or sleep. It might be caused by the CLL itself or might be a side effect of treatment. It’s one of the most common problems that people with cancer have.

FISH test

FISH stands for Fluorescent In Situ Hybridisation. This test looks for abnormalities in the cancer cell genes. It is important for determining how the CLL may develop and for choosing what treatment may be necessary. It should always be performed prior to treatment decisions. Often conducted in association with Flow Cytometry (See below).

Flow Cytometry

A procedure that examines the molecular characteristics of cells. This test it key in establishing the exact diagnosis of CLL.

Full Blood Count (FBC)

A routine blood test used to see the number of blood cells (red, white and platelets) in the bloodstream. A FBC is usually done at each appointment with the doctor and enable the progress of your disease to be monitored.

Haematologist

A doctor specialising in blood disorders.

Haemoglobin

A protein in red blood cells that carries oxygen from the lungs to the body’s tissues and returns carbon dioxide to the lungs.

IgHV test (formally known as IgVH)

A test to see if the immunoglobulin heavy chain (IgVH) gene in the cancer cells is mutated or unmutated. Mutated is more favourable than unmutated, although this distinction is becoming less important with the newer therapies becoming available.

IVIG

This stands for Intravenous Immunoglobulin and is a blood product used to treat CLL patients who have recurrent, serious infections combined with low levels of immunoglobulin in the blood.

Immune system

The network of cells, tissues and organs which protect your body against infection. See the separate section on the Immune System.

Leukaemia

Often referred to as ‘cancer of the blood’, leukaemia is divided into many different types – some which develop faster (acute), and others which develop more slowly (chronic). People with leukaemia have large numbers of abnormal blood cells, usually types of white blood cell, which take over the bone marrow and often spill out into the blood stream. Other areas that may be affected are lymph nodes, spleen, liver, the membranes surrounding the brain and spinal cord (meninges), gums and skin.

Lymph node or lymph gland

A bean-shaped organ that acts as a filter to catch viruses, bacteria and other foreign materials. It contains white blood cells that fight infection.

Lymphocyte

A type of white blood cell which is involved in the immune defences of the body.

Lymph vessels

Small tubes which make up a network which runs around your body. They carry a fluid called lymph.

MRD (Minimum Residual Disease)

When a small number of cancer cells remain in the patient during or following treatment.

Mutation

A small genetic change to DNA. These changes are caused by copying mistakes when a cell was dividing. If the mutation affects the way cells normally work, it can lead to a disease.

Platelets

A component of blood that is important to prevent bleeding and bruising.

Spleen

An organ that filters the blood. It sits under your ribs on the left-hand side of your body. The spleen has two main jobs: to remove old red blood cells and to help protect your body from infections. In CLL, the spleen can become enlarged and extend below the rib cage.

Stem cells

Cells that are able to develop into other cell types. Stem cells act as a repair system for your body and replenish other cells. They’re found in embryos and some organs in adults.

Radiotherapy

The use of radiation in treatment. Radiotherapy kills cancer cells in the area of the body being treated, so it can be an effective treatment for diseases which affect a particular part of the body such as lymphoma and myeloma. It’s very rarely used in CLL.

Refractory disease

A cancer that does not respond to treatment or that relapses soon after treatment.

Thrombocytopenia

A lower than normal number of platelets in the blood. Platelets are important in blood clotting and a shortage may result in increased tendency to bleeding or bruising.

Tumour Lysis Syndrome (TLS)

A potential complication during treatment, caused by a drug triggering the quick death of a large number of cancer cells, making them enter the bloodstream, which the kidneys can’t cope with. Some modern treatments are very good at killing cancer cells, so patients are very carefully monitored, and doses of the drug or drugs are gradually increased.