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Welcome! Information for people with DLBCL and their care partners

We wish to support you, and your care partners, with answers to your questions about lymphoma.

What is lymphoma? How is it diagnosed & treated? Which tests should be made?

Clinical studies search for better medical treatments. Better treatments are needed. This is especially so for fast-growing, aggressive forms of lymphoma.

We invite you to use this site to find out more about Roche clinical studies for lymphoma.

The site provides a convenient way to contact a study nurse who can answer your questions about Roche clinical trials. The nurse can connect you with the medical team who provide the study treatment and care.

As I face the second part of this journey I realize I do not just want to survive - I want to thrive!

WHAT IS LYMPHOMA?

This site is produced with doctors who are experienced in lymphoma care.

Lymphoma is a form of cancer that affects lymphocytes, a type of white blood cell.

Normally, lymphocyte cells are produced according to the body’s needs.

In lymphoma, cancer-causing processes produce lymphocytes uncontrollably. These lymphocytes have defects, which distinguish them from normal lymphocyte cells.

As lymphoma progresses over time, tumors may begin to form.

Our clinical study treats a fast-growing form of lymphoma called Diffuse large B cell lymphoma. This is sometimes abbreviated to DLBCL.

DLBCL affects a specific type of lymphocyte called B cells. The defective B cell lymphocytes are larger than normal B cells.

Fact Check: Lymphocytes & lymphoma

Lymphocytes are a type of white blood cell, and normally help our immune system to fight infections. In lymphoma, cancer-causing processes disrupt the healthy activities of lymphocytes. These disruptive processes allow cells to divide uncontrollably and form tumors.

 

What are the symptoms of Diffuse large B cell lymphoma? How does the disease progress?
At first, symptoms can begin with a rapid swelling of a lymph node in the neck, or armpit. The swelling may sometimes be painless.

Other symptoms include fever, night sweats and weight loss. These are known as B-symptoms.

Sometimes DLBCL is found in the stomach, gastrointestinal tract, the skin, or the brain. This is known as extranodal disease.

Fact Check:

People with DLBCL may start to develop tumors. The tumors can develop within lymph nodes in the neck, armpit or groin. Lymph nodes belong to a system of connected vessels called the lymphatic system.

 

Once a diagnosis of DLBCL is made your medical team determines how far lymphoma has progressed.

When DLBCL is detected early, the disease may be confined to a specific region.

The disease may be confined to regions above the diaphragm muscle, in the chest region. Or it is confined to below the diaphragm muscle, in the abdomen.

In many cases, however, DLBCL is diagnosed when the disease has progressed to a more advanced stage.

In advanced DLBCL the disease is found in lymph nodes above and below the diaphragm, or may be found beyond the lymph nodes in places such as the liver, lung, or the brain.

Fact Check: What are lymph nodes? What is the lymphatic system?

The lymphatic system is a group of organs and connected vessels including the bone marrow, spleen, the thymus located in the upper chest, and lymph nodes. Cells of the body’s protective immune system, including lymphocyte cells, cycle through a system of vessels and nodes extending around your body. The cells are carried by a watery fluid known as lymph. Lymph fluid pools together from the tiny spaces between cells throughout our entire body. The fluid carries lymphocytes, and other immune cells, whose task is to recognize infections. The lymph fluid then passes through tiny vessels and eventually flows into one of the many lymph nodes in our head, chest, abdomen and limbs. The fluid collects in lymph nodes before emptying, through special ducts, into the bloodstream. Most lymph nodes are located in the neck, armpits and groin.

 

I have a new symptom. What does it mean?
DLBCL can progress rapidly and may require prompt medical attention. Make contact with your medical team if you experience new symptoms or other unusual changes.

Ask your doctor to explain the symptoms of active disease.

A rapid swelling under the skin can signal that lymphoma is active in a lymph node. Similarly, a new chest pain, breathlessness and cough may also be a sign of disease activity.

Pain in the groin-region, including pain when passing urine, can indicate an obstruction caused by a tumor.

Early satiety, the feeling that you are full after eating only a small portion of your meal, can indicate that the disease is active in the spleen.

You might experience a return of one or other B-symptom: fever, night sweats and weight loss.

And pay attention to any rapid and lasting change in your energy levels. Fatigue, a strong feeling of tiredness that does not get better with rest, can also signal active disease.

Finally, you may find that you bruise easily. This can indicate that the disease is active in the bone marrow.

LYMPHOMA CARE?

The standard therapy for people with DLBCL is a combination of treatments. One such combination is known by the acronym R-CHOP. Other treatment combinations are also used.

Many people respond to these treatment combinations following an initial diagnosis with lymphoma.

The R-CHOP combination of treatments includes an immunotherapy agent targeting defective B-cells. Targeted therapies are designed to recognize tumor cells only. And to destroy them selectively.

Several different chemotherapy agents are included in combination treatments. Chemotherapy agents stop certain cells in the body from dividing to form new cells.

And patients receive corticosteroids.

Every effort is made to limit the progress of DLCBL. However, for some people who experience a return of the disease there are fewer treatments currently available.

The disease may return, even if your treatment has initially been successful. The cancer-causing processes resume and your condition may worsen once more.

Relapsed lymphoma, refractory lymphoma, what does this mean?

The medical term ‘relapsed’ means that lymphoma returns following treatment. The term ‘refractory’ can mean that a person receiving treatment for lymphoma is progressing and getting worse.

Doctors also use the term refractory when treatment is not bringing any improvement.

Clinical studies, such as the study described on this website, are designed to develop better treatments for people with relapsed or refractory lymphoma.

All people participating in this clinical study will receive the new investigational treatment plus the standard care for DLBCL.

Who can answer my questions about this clinical study?

Follow this link to locate nearest study locations and discuss, one-to-one, this clinical study with a study nurse.

The study nurse can advise whether you may be eligible to participate in the clinical study.

The study nurse can also arrange for you to meet the rest of the study medical team. This experienced team can assess, on medical grounds, if you are eligible to participate in the study.

Who would provide my treatment?

People participating in this clinical study will receive part of their treatment at a hospital staffed with medical teams who specialize in lymphoma care. That team includes a study doctor responsible for your care.

Your study doctor monitors and follows your treatment throughout the clinical study. The study doctor is your point of contact if you have any concerns about your medical care. Bring your questions to them. Your care partner and primary care doctor may also bring questions to the study doctor.

Some treatment in this clinical study can be taken at home. It may be possible for a study nurse to visit your home and assist you with the treatment.

What should I ask my doctor?

We encourage you to discuss clinical studies with your doctor, and with others who can support you to make decisions about your care and treatment.

Seek advice about whether all the relevant tests have been made, including tests for genetic factors that may be driving disease. These tests can guide you and your doctor towards a way forward with your treatment.

Timing is important in the treatment of DLCBL. A regular infection can develop into sepsis, a medical emergency that may result in damage to vital organs such as the lungs and brain.

Thank you for your visit, and for bringing your questions to us. Let us know how we can support you further with information about lymphoma clinical studies.