Diffuse large B-cell lymphoma, or DLBCL, is a cancer that starts in white blood cells called lymphocytes. It usually grows in lymph nodes -- the pea-sized glands in your neck, groin, armpits, and elsewhere that are part of your immune system. It can also show up in other areas of your body.
DLBCL grows fast, but 3 out of 4 people are disease-free after treatment, and about half are cured. And researchers are working to make treatments even better.
There are two types of lymphoma: Hodgkin's and non-Hodgkin's. They behave, grow, and respond to treatment differently. DLBCL is the most common non-Hodgkin's lymphoma. And there are several types of DLBCL.
It's normal to have worries and questions about any serious condition. Learn about your treatment options, and seek out family and friends for support. They can help you get through the emotional and physical challenges ahead.
Doctors don't know what causes DLBCL and other non-Hodgkin's lymphomas. They do know that you are more likely to get them if you're:
- Middle-aged or older (on average, people are diagnosed with DLBCL at 64 years old)
- A man
- Not Asian or African-American
Your chances of getting DLBCL may also go up if you have an autoimmune disease, or your immune system is weakened in another way.
If you've been treated with both radiation and chemotherapy before, or you've been exposed to higher levels of radiation or certain chemicals, your odds are higher, too.
The first sign of DLBCL is often a lump in your groin, armpit, or neck. It's likely to grow quickly and may or may not be painful. In about 40% of people, DLBCL shows up in other areas like your stomach or bowel.
You may also have:
- Drenching night sweats
- Weight loss
- Belly or chest pain or pressure
- Shortness of breath or cough
Getting a Diagnosis
Your doctor may ask you:
- Do you have swelling in your groin, armpits, neck, or another part of your body?
- If you do have swelling, when did it start and is it painful?
- Have you noticed anything else that you're concerned about?
- Do you tend to get a lot of infections?
- Have you had any infections lately?
- Have you ever been diagnosed with lymphoma?
- Do you have other medical conditions?
- What medications do you take for them?
Your doctor will likely take out part or all of the lymph node. That's called a biopsy. In many cases, you can get this done as a short procedure in a doctor's office. You'll be awake, and your doctor will numb the spot where they make a small cut to get to the lymph node. But if the lymph node is deeper inside your body, you may need to get the procedure done in a hospital while you're "asleep" with general anesthesia.
If your doctor thinks that swelling elsewhere in your body might be DLBCL, they'll do a biopsy of that area, too, and check it under a microscope to look for sick cells. They could also do tests on the samples, such as one that looks for special markers on B-cells.
When the biopsy shows that you have DLBCL, more tests can find out what parts of your body the disease has affected. These tests help the doctor figure out the stage of the cancer and how far it has spread. They can also help guide your treatment and check how well it's working.
Bone marrow biopsy. Your doctor will take samples of your bone marrow, usually from the back of your hip. For this test, you lie down on a table and get a shot that will numb the area. Then your doctor uses a needle to remove a small amount of liquid bone marrow.
Your doctor will look at the sample under a microscope. They'll check the size and shape of the white blood cells.
CT, or computed tomography. It's a powerful X-ray that makes detailed pictures inside your body.
PET scan. This test uses radioactive material to look for signs of cancer.
Questions for Your Doctor
- What type of DLBCL do I have?
- What stage is it, and what does that mean?
- When will I start treatment?
- How will I feel during treatment?
- Will I have side effects that last after the treatment?
- How likely is it that this treatment will work?
- What if it doesn't?
- How many people have you treated who have DLBCL?
Because DLBCL grows fast, it's usually in more than one place in your body when doctors find it, so you'll want to treat it quickly. The type of treatment that's right for you depends on things like your age, your general health, the stage and subtype of the cancer, and where it has spread. Doctors use a number called an IPI score that takes these into account to decide how serious your cancer is.
The most common treatment to start with is called R-CHOP, a combination of IV medicines and pills, given in cycles, usually every 3 weeks. The more serious your cancer, the more cycles you'll need.
You get this treatment by IV and prenisone as a pill. You may also need radiation. This treatment uses X-rays to destroy your cancer cells. It's done over several weeks.
For many people, DLBCL does not return after treatment. The chance of it coming back is linked to your age, general health, the stage of your illness, and where it is on your body.
If it does return, your doctor may suggest a treatment that combines high-dose chemotherapy with a stem cell transplant.
Stem cells are in the news a lot, but usually when you hear about them they're referring to "embryo" stem cells that are used in cloning. The stem cells in a stem cell transplant are different. These are cells that can come from your blood or bone marrow or from umbilical cord blood and help make new blood cells.
For DLBCL, you will get a type of procedure called "autologous stem cell transplant." That means the stem cells that are transplanted are taken from your own body, rather than from a donor.
First, your doctor will give you a drug called a "growth factor" that causes your stem cells to move from your bone marrow to your bloodstream. Your doctor collects the stem cells from your blood. Sometimes the stem cells are frozen so they can be used later.
After the collection of your stem cells from your blood, you will get treated with high doses of chemotherapy or radiation that could last for several days. This can be a tough process because you may get side effects such as mouth and throat sores or nausea and vomiting. You can take medication that eases some of these side effects.
A few days after your chemotherapy is over, you may be ready to begin your stem cell transplant. The stem cells are given to you through an IV. You won't feel any pain, and you're awake while it's happening.
It can take 8 to 14 days after the transplant for your bone marrow to start producing new blood cells. You may need to stay in the hospital for a few weeks. During this time you may also be at risk for infection while your bone marrow gets back to normal, so your doctor may give you antibiotics to keep you from getting sick.
You may still be at a higher risk for infection for several months after you get home from the hospital.
It's natural to feel worried or anxious while you recover from a stem cell transplant. Your family and friends can be a great source of support. It always helps to share your worries and fears with other people.
Another option is a gene therapy called CAR-T therapy. CAR-T stands for chimeric antigen receptor T cells. In this procedure, your own T cells are genetically engineered in a lab so that they will seek out and fight the cancer cells in your body. CAR-T can be used in adults with DLCBL, primary mediastinal large B cell lymphoma, high grade B cell lymphoma, and DLBCL arising from follicular lymphoma.
If you have had two prior therapies and your DLBCL returns, your doctor may prescribe one of these immunotherapy drugs:
- Blinatumomab (Blincyto)
- Brentuximab vedotin (Adcetris)
- Polatuzumab vedotin (Polivy)
- Tafasitamab (Monjuvi)
If your DLCBL comes back, it can be harder to cure. Researchers are looking for new ways to fight DLBCL in clinical trials. These trials test new drugs to see if they are safe and if they work. They often are a way for people to try new medicine that isn't available to everyone. Your doctor can tell you if one of these trials might be good for you.
Taking Care of Yourself
Though DLBCL treatment can work very well, it can also be tough. Your energy and emotions may go up and down as you go through it. For example, it's natural to feel worried or anxious while you recover from a stem cell transplant.
Talk about your fears and feelings with your loved ones. Ask your doctor about finding a cancer support group.
You feel better during treatment if you:
- Keep your treatment goals in mind when the going gets rough.
- Save your energy for what's most important to you. Let the small stuff slide.
- Do exercise, like walking, to help you fight fatigue. Check with your doctor first.
- Have a light meal before chemotherapy sessions to prevent nausea.
What to Expect
Many people with DLBCL feel OK during treatment and recover within a few months. If you're disease-free after treatment, it's normal to worry that it might come back. Reach out to your family and friends, so they know what you're going through. Let them know how they can help. It's also a good idea to connect with a support group of people who have also had DLBCL.
The Lymphoma Research Foundation has many resources on treatment options, advances in research, clinical trials, and ways to cope with lymphoma. These include one-on-one peer support and financial aid programs.