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Additional Participant Resources

Although the journey living with lymphoma can be filled with a variety of ups and downs, you’re not alone. Some of the resources and support that can help you along the way are listed below.

Lymphoma Support

Leukemia & Lymphoma Society (LLS)

LLS is a source for free blood cancer information, education, and support for patients, survivors, families, and healthcare professionals. LLS has chapters across the United States.

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Lymphoma Research Foundation (LRF)

LRF is a lymphoma-focused health organization devoted to funding innovative lymphoma research and providing support and services to people with lymphoma, their families, and caregivers.

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Patient Empowerment Network (PEN)

PEN helps cancer patients and caregivers with the knowledge and tools to boost confidence, put them in control of their healthcare journey, and assist them in receiving personalized care to ensure they have the best possible outcome.

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Frequently Asked Questions

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A clinical research study, also known as a clinical trial, is a medical study that is designed to answer questions about the safety, efficacy, and tolerability of potential new drugs. All potential drugs or treatments must be studied before they can be approved for use in patients and made available to the public.

It is important to test drugs in the people they are meant to help. It is important that research includes a variety of people, because different people may respond differently to treatments.

Participant safety and welfare is always the most important aspect of any research study. As a result, studies are highly regulated with safeguards in place by both the study sponsor and by the Institutional Review Board (IRB) or Ethics Committee (EC). Research studies are also overseen by governmental agencies, such as the Food and Drug Administration in the United States, to protect the rights and welfare of volunteers. 

Once a research study begins, the IRB/EC watches over it in case there are any problems. If you are in a research study, you can contact the IRB/EC with any questions or concerns.

Study clinics will follow recommended local and federal clinical guidelines.

Want to learn more about the key terms involved in lymphoma clinical research?

Download the Patient-Doctor Discussion Guide 

If you qualify for and agree to participate in the study, you will not have to pay for the investigational drug. In addition, reimbursement for study-related travel expenses may be available.

When the research study is over, the sponsor may seek to publish the results (in a scientific journal, for example). Study results will also be posted on ClinicalTrials.gov after all study participants have completed the study and study data has been analyzed. Your identity will remain confidential. Only overall summary data results from participants will be publicly shared. Research results will never contain your name and will never publicly report your individual data.

Research studies are designed in specific ways to test investigational drugs for safety and efficacy. One or more of the answers that you provided were outside of the guidelines for the study. This does not mean you will not qualify for different research studies.

Sources:

https://clinicaltrials.gov/about-site/trends-charts
Burroughs et. al. Racial and Ethnic Differences in Response to Medicines: Towards Individualized Pharmaceutical Treatment. J. Natl. Med. Assoc. 2002, 94, 1–26.
nia.nih.gov/health/clinical-trials-benefits-risks-and-safety 

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Quick Facts on Non-Hodgkin Lymphoma2

  • Non-Hodgkin lymphoma (NHL) affects the lymphatic system, which includes a network of vessels, nodes, and ducts that help to maintain body fluid levels and remove cellular waste. It is more common than HL.
  • There are two broad categories of NHLs:
  • B-cell lymphomas (which account for about 85% of all NHLs)
  • T-cell lymphomas (which account for about 15% of all NHLs)
  • In terms of growth, NHLs are broken down into two categories:
  • Indolent = slow-growing
  • Aggressive = fast-growing
  • There are more than 90 types of NHLs overall. Although NHLs have traits in common, they may have different growth patterns, different appearances under a microscope, and different responses to treatment.
  • Symptoms include swollen lymph nodes, fever, night sweats, fatigue, and weight loss.

Quick Facts on Mantle Cell Lymphoma (MCL)12

  • Mantle cell lymphoma is a rare form of B-cell non-Hodgkin lymphoma (NHL). It is considered a B-cell lymphoma because it affects the B-lymphocytes. Lymphocytes help your body fight infections.
  • This rare condition affects only about 1 in 200,000 people each year.
  • Within lymph nodes, there are compartments called lymphatic nodules. There is a ring of small lymphocytes that surround the center of each nodule—this is the mantle zone. With MCL, your body overproduces lymphocytes in the mantle zone.
  • MCL is an aggressive NHL, which means that it progresses quickly. It typically affects older adults between 60 and 70 years old.
  • The most common symptoms of MCL include swollen lymph nodes, fatigue, night sweats, fever, and unexplained weight loss.
  • MCL is typically diagnosed through a combination of physical examination, blood tests, imaging studies, and a lymph node biopsy.

Quick Facts on Follicular Lymphoma

  • Follicular lymphoma is a type of cancer that affects white blood cells called B-lymphocytes. Lymphocytes help your body fight infections.
  • Follicular lymphoma is a non-Hodgkin lymphoma (NHL). It is also a B-cell lymphoma because it affects the B-lymphocytes.
  • Follicular lymphoma accounts for 20–40% of all NHLs in Western Europe and the United States.7
  • Follicular lymphoma is an indolent NHL, which means that it progresses slowly. People with follicular lymphoma may not notice any obvious symptoms of it.
  • Symptoms include swollen lymph nodes (especially in the part of the body where the lymphoma starts to grow), fever, night sweats, fatigue, and weight loss.8
  • Incidence of follicular lymphoma increases with age, and it is the most common form of indolent NHL.9

Quick Facts on Diffuse Large B-Cell Lymphoma

  • Diffuse large B-cell lymphoma (DLBCL) is the most common of all NHLs worldwide.4
  • DLBCL is considered an aggressive or fast-growing NHL. It is also a B-cell lymphoma because it affects white blood cells called B-lymphocytes. Lymphocytes help your body fight infections.
  • Although DLBCL can affect children, and is one of the most common NHL subtypes in children,5 people over the age of 60 are most commonly affected by DLBCL.4
  • For many with DLBCL, the first symptom is rapid swelling in the neck, underarms, or groin. The swelling is caused by enlarged lymph nodes.6
  • Treatment will depend on the subtype of DLBCL. For example, there are subtypes that mostly occur in younger patients and affect the chest cavity, while there are other subtypes that only affect the brain.6