Coping with Lymphoma and CAR T Treatment

Illustration of immune cells attacking cancer cells

This platform is specially for anyone who has been affected in any way by lymphoma or anyone who wants to learn more about how CAR T treatment works.

We have designed it to help people who have been affected by lymphoma, whether they are patients themselves, or looking for information about a treatment such as CAR T, or simply wanting to support their loved ones.

Facing a diagnosis of lymphoma is tough ordeal and raises numerous questions and concerns for which it can be difficult to find reliable information. This platform aims to give you all the keys for understanding lymphoma better and for guiding you in your discussions with health professionals about CAR T.

To help you find your way, our website is structured in several sections:

Homepage - An introduction to lymphoma and an overview of the other sections of the website.

A general practitioner conducting a clinical examination, palpating areas with lymphatic organs and lymph nodes
Symptoms of lymphoma

Learn to recognise the signs and symptoms of lymphoma.

A doctor supporting a lymphoma patient and explaining various treatment options
Lymphoma treatments

Discover the various options for treating lymphoma.

A doctor informing a lymphoma patient about innovative CAR T treatment
CAR T treatment 

An in-depth look at the innovative CAR T lymphoma treatment.

Lymphoma patient searching for information and patient association resources
Resources 

Useful resources for patients and their friends/families.

The definition of lymphoma

What is lymphoma?

Lymphoma is a cancer of the lymphatic system that develops in certain white blood cells known as lymphocytes. These then accumulate as a tumour masse (the actual lymphoma), principally in the lymph nodes. The lymphocytes become cancerous and proliferate out of control.

This is why the term lymph node cancer is sometimes used.

Illustration of the organs of the lymphatic and immune system

The lymphatic system is an active component of our immune defence systems. It comprises various organs:

  • the lymph nodes, which are spread throughout the body and act as barriers to infection (functioning rather like filters against microbes)
  • the lymphatic vessels (which are like blood vessels) and the lymph (the liquid containing the lymphocytes)
  • In rare cases, the disease can appear in other organs of the lymphatic system such as the spleen or the bone marrow.

The types of lymphoma

There are various types of lymphoma, as you can see, with numerous subtypes (more than eighty!), which makes it difficult to understand the disease. It is important to understand your diagnosis fully and to ask your doctor whatever questions you may have about the subgroup and the grade of the disease.

The large number of subcategories of lymphoma are generally classified into two main categories:

  • Hodgkin lymphomas or Hodgkin’s disease - the less common type
  • Non-Hodgkin lymphomas - the more common type, split in turn into subgroups:
    • Indolent lymphoma (developing slowly) and aggressive lymphoma (developing rapidly), or sometimes also into
    • B-cell and T-cell lymphomas.

As the term "non-Hodgkin lymphoma" includes over eighty different subtypes of lymphoma, knowing the exact diagnosed subcategory and disease progression, is crucial for a better understanding of the diagnosis and the options for treatment. Talk about it with your haematologist.

Some of the categories of non-Hodgkin lymphoma are listed below:

DLBCL

Diffuse large B-cell lymphoma (DLBCL) is the commonest subtype of non-Hodgkin lymphoma, accounting for about 30% of cases. It is an aggressive (rapidly growing) lymphoma and about 30-40% of patients do not respond to the initial treatment (the disease is then said to be "refractory") or have a relapse after a period of remission.

*Relapsed or Refractory Diffuse Large B-Cell Lymphoma: Dazed and Confused. Oncology (Williston Park). 2022 Jun 10;36(6):366-375.

PMBCL

Primary mediastinal B-cell lymphomas.

Follicular lymphoma

Develops from cancerous B-lymphocytes that cluster together in rounded groups (follicles) in the lymph nodes or other affected tissues, hence the adjective "follicular". This is a type of indolent lymphoma.

Marginal zone lymphoma

Is a type B lymphoma that in turn has three subtypes. It is also a type of indolent lymphoma.

Mantle cell lymphoma

Affects the B-lymphocytes that are present in a specific zone of the lymph node, known as the "mantle zone". These are more commonly aggressive.

Burkitt lymphoma

Develops in B-lymphocytes and is generally aggressive.

Peripheral T-cell lymphoma

Develops at the expense of T-lymphocytes; it is the commonest type of type T non-Hodgkin lymphoma.

Lymphoma locations

Where can lymphoma develop?

Similarly to the circulatory system, the lymphatic system plays a crucial role in the immune system. It consists of vessels of various sizes through which the lymphatic fluid circulates, carrying waste products plus the immune cells. Lymphocytes – a type of white blood cell produced in the lymphatic tissue – are an essential part of our defences against infections.

Given that white blood cells circulate throughout the body in the bloodstream and lymph, malignant or cancerous cells can get everywhere in the organism, allowing lymphomas to develop in almost any part of the body.

Lymphomas can therefore be located in:

Illustration of lymphoid organs

Lymph nodes: Lymphoma often develops in lymph nodes throughout the body, manifesting as e.g. swollen nodes in the neck.

The skin: Cutaneous lymphoma affects the skin and often presents as a rash.

The brain: A rare type of lymphoma can affect the brain.

Other organs: Lymphoma can also appear in the liver, the spleen, the bone marrow, the stomach, the intestines, the thyroid gland and other organs.

It is important to be aware that the lymphoma can develop not only in the lymph nodes but also in other tissues and organs. The dissemination of malignant cells throughout the organism makes this a complex disease, underlining the importance of monitoring the various symptoms and affected zones.

Lymphoma: life expectancy

Survival in lymphoma

Is lymphoma fatal?

The answer depends on the type of lymphoma and the stage of the disease. Life expectancy with lymphoma also varies with the treatment and the patient’s individual response.


Illustration of the different stages of lymphoma

Survival statistics

In Belgium

The five-year survival averages for 72% Non-Hodgkin lymphoma.1 However, this varies greatly depending the subtype of lymphoma.

Image showing survival statistics for non-Hodgkin's lymphoma

For DLBLC, the most common of the non-Hodgkin
lymphomas, a 59% survival rate was noted.2

Image showing survival statistics for DLBCL (Diffuse large B cell lymphoma)

For follicular lymphoma, which is primarily indolent,
the survival rate increases to 89%2 (relative survival
after 5 years).

Image showing survival statistics for follicular lymphoma

Factors influencing survival

Several factors affect survival rates for lymphoma patients, in particular:

Management of advanced phases

In the case of terminal-stage lymphoma, palliative care is often suggested in order to improve the patient’s quality of life. This care includes pain management, emotional support and treatment of the associated symptoms. This type of care is also provided for people who are unable to tolerate intensive therapy.

To find out more, please visit our dedicated pages. Together, we can help you understand and manage this disease better.

References
    1. 
  1. Stichting tegen kanker, Non-hodgkinlymfoom, https://kanker.be/kanker/non-hodgkinlymfoom/. Accessed 30/09/2024
  2. 2. 
  3. Mature non-Hodgkin B-cell neoplasms Haematological malignancies in Belgium 2004-2018, Belgian Cancer Registry, Brussels, 2021, p.219.

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