What is Non Hodgkin’s Lymphoma | NHL General Information

What is Non Hodgkin’s Lymphoma?
Non-Hodgkin Lymphoma: General Info

What is non-Hodgkin’s lymphoma? Below we feature some of the basic background of NHL, including common symptoms, diagnostic and staging tests, as well as treatment.

Diagnosis

What is non-Hodgkin’s 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 created by TPS to give a general picture of the different types of non-Hodgkin’s 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


Non-Hodgkin’s Lymphoma Patient Stories

B-Cell Stories
Burkitt Lymphoma
Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell (DLBCL) & Burkitt Lymphoma, Stage 4 | Erin Richter

Erin Richter, DLBCL & Burkitt Lymphoma, Stage 4



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)
CAR T-Cell Therapy Stories: Refractory Non-Hodgkin Lymphoma, Diffuse Large B-Cell Lymphoma (DLBCL)| Shahzad’s Story

Shahzad Bhat's CAR T Story



Cancer details: Refractory non-Hodgkin lymphoma, 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
Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell (DLBCL) & Burkitt Lymphoma, Stage 4 | Erin Richter

Erin Richter, DLBCL & Burkitt Lymphoma, Stage 4



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)
Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell (DLBCL), Stage 4 | Emily Gibson

Emily Gibson, Diffuse Large B-Cell (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)
Mantle Cell Lymphoma Stories: MCL, Stage 2, Non-Hodgkin’s Lymphoma | Tim Holyoake

Tim Holyoake, 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
Mantle Cell Lymphoma Stories: Stage 4, Non-Hodgkin’s Lymphoma| Sheryl’s Story

Sheryl Brian, 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
Mantle Cell Lymphoma Stories: Stage 4, Non-Hodgkin’s Lymphoma | Shari Bernhard

Shari Bernhard, 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)
Mantle Cell Lymphoma Stories: Stage 4, Non-Hodgkin’s Lymphoma, Clinical Trial | Bobby Jones

Bobby Jones, 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
Mantle Cell Lymphoma Stories: Stage 4 MCL, Non-Hodgkin’s Lymphoma | Candy Whitbeck

Candy Whitbeck, Mantle Cell Lymphoma (MCL), Stage 4



1st Symptoms: Bump in back of head, extreme fatigue, acute weight loss
Treatment: 6 cycles bendamustine & rituximab (Rituxan), BEAM chemo before autologous stem cell transplant, 2 years maintenance chemo (Rituxan)
marginal zone lymphoma (mzl)
Non-Hodgkin’s Lymphoma Stories: Marginal Zone Lymphoma (MZL), Gastric MALT | Rachel Posell

Rachel Posell, Marginal Zone Lymphoma, Gastric MALT



1st Symptoms: Fatigue, bloating, stomach pain
Treatment:
Chemotherapy, targeted therapy, surgery
primary mediastinal b-cell lymphoma (pmbcl)
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal (PMBCL), Diffuse Large B-Cell Lymphoma| Arielle Rosen

Arielle Rosen, 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
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 1 | Keyla Scrogham

Keyla Scrogham, Primary Mediastinal (PMBCL), Stage 1



1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal, Stage 1 to 2 | Donna Sadeghi

Donna Sadeghi, 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
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 2 | Patrick Mulick

Patrick Mulick. 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
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell (PMBCL), Stage 2 | Crystal Zunino

Crystal Zunino, Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma, Stage 3 | Stephanie Chuang

Stephanie Chuang, 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
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Relapsed, CAR T-Cell Therapy | Sonia Su

Sonia Su, 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
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 4 | Mags Bujalski

Mags Bujalski, 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
small lymphocytic lymphoma/chronic lymphocytic leukemia (sll/cll)
Non-Hodgkin’s Lymphoma Stories: Chronic Lymphocytic Leukemia (CLL), Clinical Trial | Sean Roberts

Sean Roberts, Chronic Lymphocytic Leukemia (CLL)



1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax
Non-Hodgkin Lymphoma Stories: Chronic Lymphocytic Leukemia (CLL) | The Patient Story

Lacey Buchorn, Chronic Lymphocytic Leukemia (CLL)




1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R
Chronic Lymphocytic Leukemia (CLL) Stories, Non-Hodgkin’s Lymphoma| Tony Donk

Tony Donk, Chronic Lymphocytic Leukemia (CLL)



Cancer details: ~25% of new cases of leukemia, also classified as non-Hodgkin lymphoma (slow-growing)
1st Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: Chemo pill (Imbruvica), takes 3 pills a night
waldenstrom Macroglobulinemia
Non-Hodgkin Lymphoma Stories: Waldenstrom Macroglobulinemia (WM)| Sheree Nielsen

Sheree Nielsen, Waldenstrom Macroglobulinemia



Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Feeling anemic
Treatment: Chemotherapy (bendamustine and rituximab)
...
Non-Hodgkin’s Lymphoma Stories: Waldenstrom Macroglobulinemia (WM)| Cindy Shubert

Cindy Shubert, 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.