Home > Cancer Patient Stories > Non-Hodgkin Lymphoma > NHL General Info
Below we feature some of the basic background of non-Hodgkin lymphoma, including common symptoms, diagnostic and staging tests, as well as treatment.
Table Of Contents
- Diagnosis
- What is non-Hodgkin lymphoma?
- What are the most common symptoms?
- What tests do I have to undergo pre-diagnosis?
- What tests do I have to undergo for staging?
- What are the different types?
- How common is non-Hodgkin lymphoma?
- Treatment
- What is the standard treatment?
- What is a PICC line?
- What is a port?
- Patient Events
- DLBCL Patient Events
- Non-Hodgkin Lymphoma Patient Stories
- B-Cell Stories
- Burkitt Lymphoma
- Diffuse Large b-cell lymphoma (dlbcl)
- mantle cell lymphoma (mcl)
- marginal zone lymphoma (mzl)
- primary mediastinal b-cell lymphoma (pmbcl)
- small lymphocytic lymphoma/chronic lymphocytic leukemia (sll/cll)
- waldenstrom Macroglobulinemia
- B-Cell Stories
Diagnosis
What is non-Hodgkin lymphoma?
Non-Hodgkin’s Lymphoma is a cancer that develops in the body’s lymphatic system, which is part of our immune system. It’s one of two main types of lymphoma (the other is Hodgkin’s lymphoma).
- Lymphatic system: network of lymph vessels (also covers thymus, tonsils, spleen, stomach, small intestine, skin)
- Lymph: clear fluid that carries white blood cells, particularly lymphocytes like your B-cells and T-cells
- Lymph vessels: these cover all tissues of our body
- Lymph nodes: store white blood cells; filter out and remove foreign cells and organisms, get rid of waste products and fluids from the body (usually in neck, chest, underarms, chest, and groin)
- Lymphocytes: one type of white blood cell geared toward fighting infections started by viruses, bacteria, or fungi
Lymphoma happens when the lymphocytes start to multiply out-of-control.This usually means that lymphoma can start essentially anywhere but typically is found first in a lymph node (swollen). That indicates that your lymphatic system is fighting an infection.
Non-Hodgkin’s lymphoma types & subtypes
Here is a chart to give a general picture of the different types of non-Hodgkin lymphoma and subtypes.
Of these, the largest subtype of non-Hodgkin lymphoma is diffuse large B-cell lymphoma (DLBCL) which tends to grow quickly.
What are the most common symptoms?
Note: these are the most common symptoms of Non-Hodgkin Lymphoma, but there will be differences person to person. These may also be caused by many other reasons other than cancer, especially if they’re short-lived.
- Swollen, painless lymph nodes (neck, armpits, or groin)
- Unexplained weight loss
- Fever
- Soaking night sweats
- Coughing
- Trouble breathing
- Chest pain
- Weakness and tiredness that don’t go away
- Pain, swelling, or a feeling of fullness in the abdomen
*Source: National Institutes of Health
What tests do I have to undergo pre-diagnosis?
This can also range depending on where you are and/or what doctor you go to. Here are some general guidelines.
- Physical Exam: The first step is usually having a doctor check for swollen lymph nodes in your neck, underarms, and groin. The doctor will usually also feel around for a swollen spleen or liver.
- Blood tests: If the doctor suspects swollen lymph nodes or wants to be extremely thorough even without them, s/he may order blood tests in the lab. Unless your doctor’s office has a lab on-site, this will mean going to another location to draw and test the blood. The lab is checking for the number of white blood cells, an indicator of lymphoma. It would also check for other substances like lactate dehydrogenase (LDH) which tends to be high when lymphoma is present.
- Chest x-rays: A doctor will order this to see whether there are swollen lymph nodes and/or other signs of disesase.
- Biopsy: This usually requires surgery and is the most surefire way of diagnosing lymphoma. There are different kinds.
- Excisional: removing the entire lymph node; usually involves general anesthesia (going under), performed by Ear Nose Throat surgeon
- Incisional: removing part of a lymph node; usually involves general anesthesia (going under), performed by Ear Nose Throat surgeon
- Fine Needle Aspiration: getting a small sample of the lymph node; usually involves local anesthesia, performed by doctor
What tests do I have to undergo for staging?
Your doctor needs to know the extent (stage) of nonHodgkin lymphoma to plan the best treatment. Staging is a careful attempt to find out what parts of the body are affected by the disease. Lymphoma usually starts in a lymph node. It can spread to nearly any other part of the body. For example, it can spread to the liver, lungs, bone, and bone marrow.
Staging may involve some of these tests:
- Bone marrow biopsy: The doctor uses a thick needle to remove a small sample of bone and bone marrow from your hipbone or another large bone. Local anesthesia can help control pain. A pathologist looks for lymphoma cells in the sample.
- CT scan: An x-ray machine linked to a computer takes a series of detailed pictures of your head, neck, chest, abdomen, or pelvis. You may receive an injection of contrast material. Also, you may be asked to drink another type of contrast material. The contrast material makes it easier for the doctor to see swollen lymph nodes and other abnormal areas on the x-ray.
What are the different types?
There are main ways of categorizing types of Non-Hodgkin Lymphoma:
- Origin of the cancer
- B-Cell is most common, making up around 85% of all Non-Hodgkin Lymphoma cases in the U.S.
- T-Cell makes up less than 15% of the rest of cases in the U.S.
- Pace of growth
- Indolent (low-grade) lymphomas grow slowly. They tend to cause few symptoms.
- Aggressive (also called intermediate-grade and high-grade) lymphomas grow and spread more quickly. They tend to cause severe symptoms. Over time, many indolent lymphomas become aggressive lymphomas.
(Check chart at top of page for complete visual.)
How common is non-Hodgkin lymphoma?
Non-Hodgkin lymphoma makes up an estimated 4.3% of all new cancer cases in the U.S.According to the same data, the number of people dying from NHL is going down while the five-year survival rate has been on the rise since 1975.
YEAR 5-YEAR SURVIVAL RATE (%)
1975 45.7
1980 49.1
1985 52.4
1990 49.7
1995 51.9
2000 63.8
2005 71.6
2010 74.1
*National Cancer Institute
Treatment
What is the standard treatment?
According to the National Cancer Institute, there are nine different kinds of standard treatment used for non-Hodgkin’s lymphoma, including:
- Radiation therapy
- Chemotherapy
- Immunotherapy
- Targeted therapy
- Plasmapheresis
- Watchful waiting
- Antibiotic therapy
- Surgery
- Stem cell transplant
There are also promising new developments in clinical trials and CAR T-cell therapies, especially for refractory/relapsed non-Hodgkin’s lymphoma.
What is a PICC line?
What is a port?
- A port is like an artificial vein that will allow your healthcare team to give you continuous chemo for multiple days. It can also:
- draw blood for tests
- give you intravenous (IV) medication
- give you IV fluids
- It’s about the size of a quarter with varying shapes. It is most commonly called a Port-A-Cath®, PowerPort®, BardPort®, or a Mediport®.
- This can be done outpatient in a hospital’s interventional radiology department
- Usually requires more anesthesia so you can sleep through the procedure.
- Total surgery time: under 1 hour
“The port is usually placed about an inch below the center of your right collarbone (see Figure 2). If you wear a bra, the port will usually be about 1 inch from where your bra strap lies.” – Memorial Sloan Kettering Cancer Center
“Your port may raise your skin about ½ inch above normal. You will most likely be able to feel it through your skin. It will probably not be seen when you wear a V-neck sweater. Most people will not know that you have a port. Implanted ports can stay in place for years. Once you no longer need the port, it will be removed.” -Memorial Sloan Kettering Cancer Center
Patient Events
DLBCL Patient Events
Understanding New Options for Non-Hodgkin Lymphoma
April 22, 2024
The Latest in DLBCL Treatments
September 7, 2023
Non-Hodgkin Lymphoma Patient Stories
B-Cell Stories
Burkitt Lymphoma
Cancer details: Characteristics of both subtypes
1st Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatment: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
Diffuse Large b-cell lymphoma (dlbcl)
Michael E., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)
Symptoms: Back & leg pain, rash, severe itching, decreased appetite, weight loss
Treatments: Chemotherapy, CAR T-cell therapy, clinical trial (no improvement from study drug), immunotherapy (epcoritamab)
Lena V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 1
Symptoms: Blood in urine
Treatment: Surgery, chemotherapy (R-CHOP), radiation
Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)
Harriet C., Diffuse Large B-Cell Non-Hodgkin Lymphoma (DLBCL) Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Weight loss, difficulty walking, stomach pain, feeling unwell Treatment: Chemotherapy, EPOCH, methotrexate
Sammie F., Diffuse Large B-Cell Non-Hodgkin Lymphoma (DLBCL) Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Chest pain, back pain, bump on neck, night sweats Treatment: Chemotherapy, CAR T-Cell therapy
Alesia A., Diffuse Large B-Cell Lymphoma (DLBCL) Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Fatigue, shortness of breath, swelling, night sweats, anxiety Treatment: Chemotherapy
Tony W., Relapsed T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL)
1st Symptoms: A lot of effort needed cycling, body wasn’t responding the same; leg swelling
Treatment: R-CHOP chemotherapy, CAR T-cell therapy
Jonathan S., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
1st Symptoms: Severe shoulder pain
Treatment: 6 rounds of R-CHOP chemotherapy, 10 rounds of methotrexate, 12 rounds of focal radiation, autologous stem cell transplant
Leanne T., Follicular Lymphoma Transformed to DLBCL, Stage 3B
1st Symptoms: Fatigue, persistent cough
Treatment: R-CHOP chemotherapy, 6 rounds
Paige C., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Weight loss, extreme fatigue, swollen lymph nodes in the neck
Treatment: R-EPOCH chemotherapy
Stephanie Chuang
Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
Kris W., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
1st Symptoms: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy
Robyn S., Relapsed Diffuse Large B-Cell Lymphoma (DLBCL), Stage 2E
Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: R-CHOP, R-ICE, intrathecal, BEAM; autologous stem cell transplant, head and neck radiation, CAR T-cell therapy
Barbara R., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
1st Symptoms:Abdomen and gastric pain
Treatment:Chemotherapy R-CHOP, CAR T-cell therapy, study drug CYT-0851
Luis V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
1st Symptoms: Persistent cough, fatigue, unexplained weight loss
Treatment: Chemotherapy R-CHOP and methotrexate
Nina L., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
1st Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy R-CHOP
1st Symptoms of relapse: Swelling in leg, leg edema Treatment:1st line - R-CHOP chemotherapy, 2nd line - clinical trial of venetoclax-selinexor
Shahzad B., Refractory Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
1st Symptoms: Extreme fatigue
Treatment: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
FDA approved: October 2017
Cancer details: Characteristics of both subtypes
1st Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatment: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
Emily G., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
1st Symptoms: Pain in left knee
Treatment: R-CHOP chemo (6 cycles), high-dose methotrexate chemo (3 cycles)
mantle cell lymphoma (mcl)
Tim H., Mantle Cell Lymphoma (MCL), Stage 3/2
1st Symptoms:Lump on left-side of neck that grew bigger over a couple years, new lump on right side
Treatment:6 cycles Nordic chemo protocol, alternating cycles of R-CHOP and rituximab + high-dose cytarabine, autologous stem cell transplant
Sheryl B., Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms:(Over 15 years) Skin irritation from temperature changes, rising WBC levels, unexplained fatigue, retinal hemorrhage, hardened abdomen (from enlarged spleen)
Treatment:6 cycles Hyper-CVAD chemotherapy
Shari B., Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms:None, lymphoma discovered at unrelated doctor appointment
Treatment:6 cycles R-CHOP, 5 cycles Phase 3 trial of Velcade + Rituxan (normally for multiple myeloma), allogeneic bone marrow transplant (BMT)
Bobby J., Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms:Fatigue, enlarged lymph nodes
Treatment:Clinical trial of ibrutinib + rituximab, consolidated chemo of 4 cycles of Hyper-CVAD
Jason W., Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms: Hives, inflamed arms
Treatment: Calabrutinib, Lenalidomide, Rituxan
Stephanie R., Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms:Elevated white blood cell count
Treatment:6 months of rituximab + ibrutinib, 4 cycles of hyper-CVAD chemotherapy
Cherylinn N., Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms:No symptoms
Treatment:R-CHOP chemotherapy, rituximab
marginal zone lymphoma (mzl)
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Nick M., Nodal Marginal Zone Lymphoma
1st Symptoms: Daily hives, GI issues, weight loss, heart issues, night sweats
Treatment:Rituxan (rituximab) and high-dose steroids
Kimberly O., Marginal Zone Lymphoma
1st Symptoms: None at first, routine blood work showed suspicious results, bad nosebleed
Treatment: Chemotherapy (bendamustine & rituximab)
Rachel P., Marginal Zone Lymphoma, Gastric MALT
1st Symptoms: Fatigue, bloating, stomach pain
Treatment: Chemotherapy, targeted therapy, surgery
primary mediastinal b-cell lymphoma (pmbcl)
Arielle R., Primary Mediastinal (PMBCL)
1st Symptoms:Swollen neck lymph nodes, fever, appetite loss, weight loss, fatigue, night sweats, coughing, itchy skin, trouble breathing
Treatment:R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Keyla S., Primary Mediastinal (PMBCL), Stage 1
1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Donna S., Primary Mediastinal (PMBCL), Stage 1-2
1st Symptoms: Visible lump in center of throat, itchy legs, trouble swallowing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Patrick M., Primary Mediastinal (PMBCL), Stage 2
1st Symptoms: Bump pushing up into sternum
Treatment: 6 cycles of DA-EPOCH-R (dose-adjusted) chemotherapy at 100+ hours each
Crystal Z., Primary Mediastinal (PMBCL), Stage 2
1st Symptoms:Chest pain
Treatment:6 cycles of R-CHOP chemotherapy
Stephanie C., Primary Mediastinal (PMBCL), Stage 3
1st Symptoms: Visible swelling around the jaw and neck area, major fatigue
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Sonia S., Primary Mediastinal (PMBCL), Relapse, CAR T-Cell Therapy
1st Symptoms: Chest pain, superior vena cava syndrome (SVCS); persistent, dry coughs, headaches
Treatment: (1st Line) R-CHOP chemotherapy, 6 cycles (2nd Line) R-ICE Chemotherapy (3rd Line) CAR T-cell therapy
Mags B., Primary Mediastinal (PMBCL), Stage 4
1st Symptoms: Exhaustion, migraines, persistent coughs, swelling and discoloration in left arm
Treatment:(1st Line) R-CHOP chemotherapy, 6 cycles
Stephanie Chuang
Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
Stephanie V., Primary Mediastinal (PMBCL), Stage 4
1st Symptoms: Asthma/allergy-like symptoms, lungs felt itchy, shortness of breath, persistent coughing
Treatment: Pigtail catheter for pleural drainage, video-assisted thoracoscopic surgery (VATS), R-EPOCH chemotherapy (6 cycles)
Daniella S., Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 2
Symptoms: Prolonged cough, low-grade fever, night sweats
Treatment: Chemotherapy (R-EPOCH), radiation, CAR T-cell therapy
small lymphocytic lymphoma/chronic lymphocytic leukemia (sll/cll)
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Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids
Lynn B.
1st Symptoms:Prolonged fever and night sweats
Treatment:Rituxan infusion, ibrutinib daily
Leesa T.
1st Symptoms: Bruising
Treatment: Imbruvica (ibrutinib),
Brukinsa (zanubrutinib)
Learn from three of the top cancer specialists about cancer treatment trends, including precision medicine, MPNs and CLL studies.
Nadia K., Small Lymphocytic Lymphoma (SLL)
1st Symptoms:Rash, lump under arm, fatigue
Treatment:Ibrutinib and acalabrutinib
Tamsin W.
1st symptoms: Out of breath, dizzy, nauseated, tiredness, palpitations
Treatment: Obinutuzumab & venetoclax
Michele N.
1st Symptoms: Slow healing, scalp infection, enlarged lymph nodes
Treatment: Clinical trial of ibrutinib, fludarabine, chlorambucil and rituximab; acalabrutinib
Sean R.
1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax
Lacey B.
1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R
Tony D.
1st Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: Targeted therapy - orall pill (Imbruvica), takes 3 pills a night
waldenstrom Macroglobulinemia
Komal, Non-Hodgkin Lymphoma Diagnosis: Stage 4B Waldenström Macroglobulinemia Non-Hodgkin Lymphoma Symptoms: Nosebleeds, fatigue, fainting, bruises, hair loss Treatment: Chemotherapy, R-CHOP, Rituximab
...
Pete D., Waldenstrom Macroglobulinemia
1st Symptom: Irregular blood test results during a regular workup for Crohn’s
Treatment: Chemotherapy, surgery, radiation, monthly IVIG
...
Sheree N., Waldenstrom Macroglobulinemia
Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Feeling anemic
Treatment: Chemotherapy (bendamustine and rituximab)
...
Cindy S., Waldenstrom Macroglobulinemia
Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Hyperproteinemia
Treatment: Chemotherapy
...
*A lot of information on this page came from the National Cancer Institute, under the U.S. Department of Health and Human Services.
