Diffuse large B cell lymphoma (DLBCL) is a type of non-Hodgkin lymphoma (NHL). NHL is a cancer of the lymphatic system.
It develops when the body makes abnormal B lymphocytes. These lymphocytes are a type of white blood cell that normally help to fight infections. When you have a lymphoma, the abnormal lymphocytes build up in lymph nodes or other body organs.
DLBCL grows quickly and your treatment starts soon after diagnosis.
The lymphatic system
The lymphatic system is an important part of our immune system. It has tubes that branch through all parts of the body.
These tubes are called lymph vessels or lymphatic vessels and they carry a straw coloured liquid called lymph. This liquid circulates around the body tissues. It contains a high number of white blood cells (lymphocytes) which fight infection.
When you have lymphoma, some of your white blood cells (lymphocytes) don't work properly. They start to divide constantly but don't develop fully. So they can't fight infection as normal white blood cells do.
There are different types of NHL. The type you have depends on several factors including the type of cell it starts in and how fast growing it is.
There are two main types of lymphocytes – B cells and T cells. They both help us fight infections but in slightly different ways.
DLBCL affects the B cells and so is called a B cell lymphoma.
How common is it?
Each year about 5,500 people are diagnosed with DLBCL. This makes up about 40 out of 100 cases (40%) of NHL in adults.
DLBCL is more common in males than females.
Types of diffuse large B cell lymphoma (DLBCL)
As the name suggests, diffuse large B cell lymphoma (DLBCL) means this type of lymphoma has:
- abnormal and enlarged B cells (a type of white blood cell)
- cancer cells in a spread out (diffuse) pattern
There are some different sub types of DLBCL. Some sub types are quite rare, but most types are treated in a similar way.
These rare types include:
- T-cell/histiocyte-rich large B-cell lymphoma
- Epstein Barr virus positive DLBCL of the elderly
- ALK positive large B cell lymphoma
- primary mediastinal (thymic) large B cell lymphoma
- intravascular large B cell lymphoma
Symptoms can start or get worse in just a few weeks.
The most common symptom is one or more painless swellings. These swellings can grow very quickly.
General symptoms (B symptoms)
You might have other general symptoms such as:
- heavy sweating at night
- high temperatures that come and go with no obvious cause
- losing a lot of weight (more than one tenth of your total weight)
Doctors call this group of symptoms B symptoms. Some people may also have unexplained itching. It is important to tell your doctor about any symptoms like this.
Depending on where your lymphoma is, it might cause specific symptoms.
Lymphoma growing in your tummy (abdomen) or bowel might cause pain, diarrhoea or bleeding. If lymphoma is growing in your chest it might cause breathlessness, pain, a cough or headaches.
The main tests are:
- removal of the enlarged lymph node, or taking a sample of tissue from a lymph node (lymph node biopsy)
- blood tests
You have other tests if lymphoma cells are found in the biopsy. You might have different scans and a bone marrow test.
Stages and grades
Doctors put NHL into 2 groups, depending on how quickly they are likely to grow and spread. The 2 groups are:
- low grade (slow growing)
- high grade (fast growing)
DLBCL is fast growing and is called a high grade lymphoma.
The stage of NHL tells you about the number and places in the body which are affected by lymphoma.
There are different staging systems for adults and children with DLBCL. You might hear your doctor refer to the Lugano classification or Ann Arbor staging system.
If your child has DLBCL, ask your specialist to explain what the stage means.
Risk of your lymphoma coming back
For DLBCL, doctors use the prognostic index to try to decide who has a greater risk of their lymphoma being cured with chemotherapy. It depends on:
- your age
- how lymphoma affects your well being, also known as performance status
- the level of an enzyme called lactose dehydrogenase (LDH) in your blood
- whether your lymphoma is outside the lymph nodes (extranodal disease)
- the stage of your lymphoma
These factors score points to give an overall score. This score helps your doctors work out whether your lymphoma is low, intermediate, or high risk. This helps your team to plan the best treatment for you.
Treatment aims and decisions
Aims of treatment
The aim of treatment for DLBCL might be to:
- cure the lymphoma
- control the lymphoma for as long as possible
- control symptoms
- stop lymphoma spreading to other parts of the body (such as the cerebrospinal fluid)
- stop lymphoma coming back
Talk to your doctor or specialist nurse if you want to find out more about the aim of treatment.
As DLBCL is fast growing (high grade) you have treatment soon after diagnosis. If there is no sign of lymphoma following treatment, this is called remission.
Sometimes, lymphoma can come back (relapse). You would usually then have more treatment.
Your treatment depends on:
- where your lymphoma is (the stage)
- your symptoms
- your general health
- levels of some chemicals in your blood
- whether your lymphoma is likely to come back after treatment
Chemotherapy and immunotherapy (chemoimmunotherapy)
DLBCL is usually treated with a number of different chemotherapy drugs, a steroid and a targeted immunotherapy drug called rituximab (Mabthera). You might hear this combination called chemoimmunotherapy.
There are different combinations. One of the main combinations is R-CHOP. This includes the drugs rituximab, cyclophosphamide, doxorubicin hydrochloride, vincristine and prednisolone.
You have these drugs on certain days over 3 weeks. Each 3 week period is called a cycle of treatment.
For an earlier stage DLBCL, you might have 3 to 4 cycles of R-CHOP. If you have high risk disease you have a longer course of treatment (6 cycles of R-CHOP) or you might have more intensive treatment such as:
- R-CODOX-M (rituximab, cyclophosphamide, vincristine, doxorubicin and methotrexate)
- followed by R-IVAC (rituximab, ifosfamide, etoposide and cytarabine)
You may have a less intensive combination if you are older, or less fit and well. These might exclude certain drugs or have lower doses of drugs to reduce the side effects. For example, R-mini-CHOP.
Chemotherapy to stop spread to the brain
Some types of lymphoma (including DLBCL) are more likely to spread to the brain and spinal cord (central nervous system). If there is a high risk of your lymphoma spreading to your central nervous system, your doctor might want you to have treatment to prevent this. They might suggest you have a high dose of methotrexate injected into your vein.
You might have this preventative treatment if your lymphoma is:
- in your breast, testicles, adrenal gland or kidney
- likely to come back after treatment (high risk)
Occasionally (for example sometimes with testicular lymphoma) your doctor might suggest injections of the chemotherapy drug methotrexate into the fluid around your spinal cord. Chemotherapy into the fluid that circulates around the brain and spinal cord is called intrathecal chemotherapy. It is very similar to having a lumbar puncture.
You might have radiotherapy:
- after chemotherapy to stop lymphoma coming back
- before a stem cell or bone marrow transplant
It is unusual to have surgery as part of your treatment for DLBCL.
You might have surgery to:
- remove a lymph node for diagnosis and staging
- relieve symptoms if a mass is pressing on an organ causing a blockage (obstruction)
Stem cell or bone marrow transplants
Bone marrow is the spongy substance inside your bones. It contains stem cells. Stem cells develop into red blood cells, white blood cells and platelets.
A stem cell transplant allows you to have very high doses of chemotherapy. You might have a transplant using:
- your own stem cells (autologous stem cell transplant)
- a donor’s stem cells (allogeneic stem cell transplant)
You might have a transplant if your DLBCL:
- is in remission but is likely to come back
- is in a second remission
- has not responded to other treatment
You usually have a transplant using your own stem cells for DLBCL if you are fit and well enough for this treatment. You may have a transplant using a donor’s stem cells in one of the following situations:
- your lymphoma has come back following an autologous transplant
- it has not been possible to collect (harvest) you own stem cells
You have regular follow up appointments after finishing treatment.
Your appointments might be every 3 to 4 months for at least 2 years. Your doctor will examine you and ask about side effects. You usually have blood tests. Take the opportunity to ask any questions.
Contact your medical team if you have symptoms, or other concerns in between these times. Don’t wait for your booked appointment.
After 2 years, your lymphoma specialist might transfer your care to your GP (family doctor). This is because the risk of your disease coming back after 2 years is small. Talk to your GP if you have any symptoms or concerns. The GP can then contact a specialist again if they need to.
There is research looking at how best to treat NHL.
The best person to talk to you about your outlook or prognosis is your doctor. Not everyone wants to know. People cope differently with their lymphoma and want different information.
Survival depends on many factors. So no one can tell you exactly how long you will live. Your doctor might be able to give you some guide, based on their knowledge and experience.
Coping with DLBCL
DLBCL and treatment is likely to cause physical changes in your body. The treatment can be very intense. You might be in and out of hospital for at least a few months. These changes can be hard to cope with and can affect the way you feel about yourself.
You might also have to cope with feeling very tired and lethargic a lot of the time, especially for a while after treatment.
Ask your medical team about possible support and help.
It can help to talk to friends and family. Or join a support group to meet people in a similar situation.
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