Finding out that your diffuse large B-cell lymphoma (DLBCL) hasn't responded to treatment or that it has come back can be shocking and stressful news. But there is still hope for a cure or a long remission through other treatment options.
Let's get a better idea of what DLCBL is, how to recognize a relapse or disease progression, and what your next treatment steps may be.
What Is Diffuse Large B-Cell Lymphoma?
Diffuse large B-cell lymphoma (DLBCL) is an aggressive type of non-Hodgkin's lymphoma. Aggressive, when it comes to cancer, means that it grows and spreads fast.
Lymphoma is a type of cancer that starts in the lymphatic system. The lymphatic system moves lymph fluid through the body similarly to the way the circulatory system moves blood through the body. The system includes your lymph nodes, lymph vessels, tonsils, spleen, and thymus. It's a key part of your immune system, too.
B-cell lymphoma affects B-lymphocytes. Lymphocytes are a type of white blood cell. B-cell lymphocytes fight infections by making antibodies, or proteins, that recognize and fend off viruses and other invading germs.
DLBCL tends to start as a fast-growing mass in a lymph node. It could be a node deep in your body, for example in your chest or belly area, or one you can feel, like those in your neck or armpits. But DLBCL can also start in areas outside your lymph nodes, such as your intestines, bones, brain, or spinal cord.
Even though it's described as aggressive, it's considered highly treatable. About three-quarters of people have no further signs of DLBCL after treatment. Many are considered cured. But for some people, this type of cancer goes away and then comes back, or it may not respond to treatment in the first place.
Who Gets DLBCL?
More than 18,000 people get a new diagnosis of DLBCL every year. It's not fully understood what exactly causes this specific type of cancer and why some people get it and others don't. But some people are more likely to get it than others.
Anyone can get it, but you're at higher risk if you:
- Are 60 years old or older
- Have a family history of lymphoma
- Have an autoimmune disease or some other cause of a weakened immune system
- Have certain infections, such as HIV or the Epstein-Barr virus
- Have previous radiation exposure
Types of DLBCL
T-cell/histiocyte-rich B-cell lymphoma
When pathologists look at this type of DLBCL under a microscope, they see a handful of large, abnormal B cells alongside normal T cells and normal histiocytes, another type of immune cell that originates in the bone marrow.
Primary DLBCL of the central nervous system (CNS)
This is any DLBCL that starts in the brain or the eye.
Primary cutaneous DLBCL, leg type
These abnormal B cells show up as red or bluish-red tumors that you can see under the skin's surface. Though it's called "leg type," these masses can appear anywhere on the body.
Epstein-Barr virus (EBV)-positive DLBCL of the elderly
This type of DLBCL tends to arise in people who are age 50 or older who have the Epstein-Barr virus.
DLBCL not otherwise specified (DLBCL-NOS)
This is the name given to any other type of DLBCL that doesn't fit into one of the above categories. It accounts for about 25% to 30% of non-Hodgkin's lymphoma cases in the Western world.
What's the Treatment for DLBCL?
The most commonly used treatment for DLBCL is a combination of several chemotherapy drugs, a single monoclonal antibody, and the steroid prednisone. The combo is dubbed R-CHOP for the monoclonal antibody rituximab (Rituxan); chemo agents cyclophosphamide (Cytoxan), doxorubicin (Adriamycin), and vincristine (Oncovin); and prednisone.
Sometimes people get an added chemotherapy medication, etoposide, in a regimen called R-CHOEP or R-EPOCH, depending on how it's given.
Treatment might be further customized to individual patients. You might get radiation to the affected lymph nodes after R-CHOP therapy is complete. Advanced-stage DLBCL might call for more rounds of chemo injected directly into the spinal fluid.
What Are Relapsed and Refractory DLBCL?
About 65% of people with DLBCL are cured after their first treatment. For the other 35%, the cancer either goes away after treatment and then comes back again later or it never responds to treatment at all.
DLBCL that goes into remission at first but comes back again is called relapsed. When it continues to progress during or just after treatment, it's considered refractory.
How Do Doctors Know That DLBCL Has Returned or Progressed?
During and for a few years after your first treatment, which is typically given to try to cure DLBCL, you'll continue to have follow-up appointments with your care team to see if you have achieved remission and get monitoring tests to see if you stay there.
One of the first signs that your cancer has come back or progressed may be that you are having new symptoms or some of the same ones that led to your diagnosis in the first place.
You may have:
- A quickly growing mass in your neck or belly
- Painless swelling in your neck, armpit, or groin
- Fever
- Fatigue
- Heavy night sweats
- Unintended weight loss
If DLBCL is in the GI tract, you could have:
- Pain or a feeling of fullness in your belly
- Nausea
- Vomiting
- Loss of appetite
- Unintended weight loss
If DLBCL is in your central nervous system, including your brain, spinal cord, and eyes, you may have:
- Headaches
- Confusion
- Changes in your vision
- Trouble speaking or thinking clearly
- Changes in behavior
- Seizures
DLBCL can also reach other parts of your body and cause some of the following symptoms:
- In the chest, cough, shortness of breath, trouble swallowing, and painful breathing
- In the bones, bone pain with risk of fracture
- In the liver, belly pain
- In the kidneys, blood in the urine, urinating more often including multiple times throughout the night, and pain in your lower back or belly
- In the skin, skin changes, or a rash on the legs
Doctors may confirm or first detect progression or relapse through routine tests that may include:
- Bloodwork
- Scans, such as a CT scan, MRI, or PET scan
- Biopsy of your bone marrow or your lymph nodes
If, between follow-up visits with your doctor, you start to have symptoms that seem to show the cancer might be back, let your doctor know. If the cancer does come back, other treatments including high-dose chemotherapy, CAR T, and targeted treatments are options.
Should you get a second opinion about relapsed or refractory DLBCL?
When cancer progresses or comes back, it's perfectly reasonable to get more than one doctor's opinion about your diagnosis, your prognosis, and your treatment options. A second opinion can confirm your diagnosis. It could also reveal other treatment options. It may even provide a different or better prognosis.
Doctors are used to patients seeking second opinions, so there's no need to sneak around. You can feel comfortable letting your doctor know that you'd like to get the opinion of another doctor. You can even ask your doctor for a referral to someone else. After you have the additional information, you can review all the doctors' feedback and be better equipped to decide on your next steps.
Looking ahead beyond relapse or progression
It's important to understand that just because the first or even the first and second treatments for DLBCL didn't get the expected results, you still have other good options. You may still have a chance at a cure.
Go over all your treatment options with your doctor. Ask about clinical trials. Seek a second opinion, if you wish. And lean on family and friends for support.
Show Sources
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SOURCES:
Lymphoma Research Foundation: "Diffuse Large B-Cell Lymphoma," "Ask the Doctor: There are several therapies now approved for relapsed/refractory DLBCL. What is a good way to determine which are the best options for me?"
Canadian Cancer Society: "The lymphatic system."
American Cancer Society: "Types of B-cell Lymphoma," "Treating B-Cell Non-Hodgkin Lymphoma," "Non-Hodgkin Lymphoma Risk Factors."
Mayo Clinic: "Diffuse large B-cell lymphoma."
Annals of Lymphoma: "New drugs for the management of relapsed or refractory diffuse large B-cell lymphoma."
National Cancer Institute: "Intrathecal Chemotherapy."
National Library of Medicine: Non-Hodgkin's Lymphoma: Diagnosis and Management (Chapter 6 "Follow-up of DLBCL").
Fox Chase Cancer Center: "Three Reasons to Seek a Second Opinion for Lymphoma."
