Non-Hodgkin Lymphoma Stories
Symptoms, Diagnosis, Treatment

What is Non-Hodgkin’s lymphoma? Non-Hodgkin 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 lymphoma).

Most cases are B-cell types, the others are T-cell, but many find the two main categories are: aggressive and indolent (slow-growing).

Explore below for stories from real patients about their journey battling non-Hodgkin lymphoma from symptoms, diagnosis (or misdiagnosis), treatment through the day-to-day experiences. You can also hear from a blood cancer specialist.

Aggressive Types

Diffuse Large B-Cell Lymphoma

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

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)

Primary Mediastinal B-Cell Lymphoma (PMBCL)

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

Keyla Scrogham, Primary Mediastinal (PMBCL), Stage 1



1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles

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

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

Crystal Zunino, Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy

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

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

Anaplastic Large Cell Lymphoma (ALCL)

Brianna Banachoski, Anaplastic Large Cell Lymphoma (ALCL)



1st Symptoms: Infections, inflammation, high fever, swelling, abdominal pain
Treatment: Chemo, radiation

Mantle Cell Lymphoma (MCL)

→ Read all about MCL (patients and experts) here

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

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

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)

“Combination”

Diffuse Large B-Cell & Burkitt Lymphoma

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)

Indolent (Slow-Growing) Types

Marginal Zone Lymphoma (MZL)

Rachel Posell, Marginal Zone Lymphoma, Gastric MALT



1st Symptoms: Fatigue, bloating, stomach pain
Treatment: Chemotherapy, targeted therapy, surgery

Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia (SLL/CLL)

Sean Roberts, Chronic Lymphocytic Leukemia (CLL)



1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax

Lacey Buchorn, Chronic Lymphocytic Leukemia (CLL)




1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R

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

Lymphoplasmacytic Lymphoma/Waldenstrom Macroglobulinemia

Cindy Shubert, Waldenstrom Macroglobulinemia



Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Hyperproteinemia
Treatment: Chemotherapy

Hematologists & Experts

Dr. Babis Andreadis, Blood Cancer Specialist



Oncologist: Specializing in blood cancers like lymphoma, leukemia, and multiple myeloma
Experience: 20+ years
Hospital/clinic size: Large teaching institution

Dr. James Berenson, Multiple Myeloma Specialist



Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Hospital/clinic size: Large private practice

Dr. Jacqueline Barrientos, CLL Specialist



Oncologist: Specializing in chronic lymphocytic leukemia (CLL) | 17p Deletion (Ibrutinib, Acalabrutinib, Venetoclax), IgHV mutation
Experience: ~15 years
Hospital/clinic size: Large institution

Dr. Rafael Fonseca, Myeloma Specialist



Hematologist: Specializing in the diagnosis and treatment of myeloma; defining sub-type distinctions | Clinical Trials, Selinexor, Darzalex
Experience: 25+ years
Hospital/clinic size: Large institution

Dr. Irene Ghobrial, Blood Cancer Oncologist



Oncologist: Clinical investigator and professor of hematological oncology | MGUS, Smolder Myeloma, Early Screening, Clinical Trials
Experience: ~15 years
Hospital/clinic size: Large institution

Dr. Tim Fenske, Leukemia & Lymphoma Specialist



Oncologist: Specializing in chronic lymphocytic leukemia (CLL) & other leukemia and lymphoma | CAR T, Acalabrutinib, Ibrutinib, Idelalisib, Venetoclax
Experience: ~15 years
Hospital/clinic size: Mid-sized institution

More Stories and Information

Non-Hodgkin General Info

Lymphoma Symptoms

Hodgkin Lymphoma Stories

How I Knew I Had Lymphoma

R-EPOCH Chemotherapy Info