Non-Hodgkin Lymphoma Stories
Patients Share Stories of First Symptoms, Diagnosis & Treatment
Read in-depth non-Hodgkin’s lymphoma stories from our patients and survivors, who share everything from first symptoms, different diagnoses, treatments, and quality of life. You can also hear from a blood cancer specialist.






Non-Hodgkin’s Lymphoma Basics
→ What is Non-Hodgkin Lymphoma?
→ Common Non-Hodgkin’s Lymphoma Symptoms
→ Non-Hodgkin’s Lymphoma Medical Experts
Patient Stories
→ B-Cell Lymphoma Patient Stories
• Burkitt Lymphoma
• Diffuse Large B-Cell Lymphoma (DLBCL)
• Follicular Lymphoma
• Mantle Cell Lymphoma (MCL)
• Marginal Zone Lymphoma (MZL)
• Primary Mediastinal B-Cell Lymphoma (PMBCL)
• Small Lymphocytic Leukemia/Chronic Lymphocytic Leukemia (SLL/CLL)
•Waldenstrom Macroglobulinemia
Patient Stories of Non-Hodgkin Lymphoma Diagnosis
B-Cell Lymphomas
Diffuse Large B-Cell Lymphoma
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., Stage 4 Diffuse Large B-Cell Lymphoma (DLBCL)
1st Symptoms: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy
Robyn S., Stage 2E Relapsed Diffuse Large B-Cell Lymphoma (DLBCL)
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 (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 (DLBCL), Stage 4
1st Symptoms: Persistent cough, fatigue, unexplained weight loss
Treatment: Chemotherapy R-CHOP and methotrexate
Nina L., Diffuse Large B-Cell (DLBCL), Stage 4
1st Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy R-CHOP
Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL
1st Symptoms of relapse: Swelling in leg, leg edema Treatment:1st line - R-CHOP chemotherapy, 2nd line - clinical trial of venetoclax-selinexor
Shahzad'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
Erin R., 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)
Emily G., 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 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.
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
Burkitt Lymphoma
No post found
Follicular Lymphoma
Kim S., Follicular Lymphoma, Stage 4
1st Symptoms: Stomach pain
Treatment:Chemotherapy (rituximab & bendamustine), rituximab for 2 additional years
Marginal Zone Lymphoma (MZL)
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
Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia (SLL/CLL)
SLL is essentially the same as CLL, with minor differences. Both are treated the same. Our medical expert interviews say it’s mostly categorized under leukemia, not under non-Hodgkin lymphoma.
Andrew S.
1st Symptoms: Nosebleeds (unrelated) led to blood work, revealing high WBCs
Treatment: Clinical trial, Gazyva (obinutuxumab) and steroids, Jakafi (ruxolitinib), Inrebic (fedratinib), Reblozyl (luspatercept)
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
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
Pete D., Waldenstrom Macroglobulinemia
1st Symptom: Irregular blood test results during a regular workup for Crohn’s
Treatment: Chemotherapy, surgery, radiation, monthly IVIG
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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)
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Cindy S., Waldenstrom Macroglobulinemia
Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Hyperproteinemia
Treatment: Chemotherapy
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T-Cell Lymphomas
Anaplastic Large Cell Lymphoma (ALCL)
ALCL is a T-cell subtype of non-Hodgkin’s lymphoma. There are two main types, one that impacts mostly the skin, known as cutaneous ALCL.
The other is systemic ALCL, which breaks down into ALK-positive, which more commonly affects children and young adults, and ALK-negative, which more commonly occur in older adults.
Brianna B., Anaplastic Large Cell Lymphoma (ALCL)
1st Symptoms: Infections, inflammation, high fever, swelling, abdominal pain
Treatment: Chemo, radiation
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Subcutaneous Panniculitis-like T-Cell Lymphoma (SPTCL)
Niki K., Subcutaneous Panniculitis-like T-Cell-Lymphoma (SPTCL), Stage 4
1st Symptoms: Persistent, high fevers; red, tender rashes on legs
Treatment: 12 cycles high-dose chemotherapy, allogeneic stem cell transplant
Hematologists & Experts
Rafael Fonseca, MD
Role: Interim executive director, hematologist-oncologist
Focus: Multiple myeloma, new drug development
Institution: Mayo Clinic
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Farrukh Awan, MD
Role:Hematologist-oncologist, associate professor
Focus:Leukemias, Lymphomas, BMT
Institution:UT Southwestern
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Nina Shah, MD
Role: Hematologist-oncologist, researcher
Focus: Multiple Myeloma
Institution: University of California, San Francisco (UCSF)
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Kerry Rogers, MD
Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), Hairy Cell Leukemia (HCL)
Institution: OSUCCC-The James
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Tim Fenske, MD, MS
Role: Hematologist-Oncologist
Focus: chronic lymphocytic leukemia (CLL) & leukemia and lymphoma | CAR T, targeted therapy
Provider: Medical College of Wisconsin
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Irene Ghobrial, MD
Role: Clinical investigator and professor of hematological oncology
Focus: Multiple myeloma, Waldenström’s Macroglobulinemia, early screening, clinical trials
Provider:Dana-Farber Cancer Institute (Boston)
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Edmund Tai, M.D.
Role: General oncologist, hematologist
Focus: Specialist in treating Chinese-speaking patients
Provider: Sutter Health (Bay Area, CA)
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Jacqueline Barrientos, MD
Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), lymphoma, 17p Deletion (Ibrutinib, Acalabrutinib, Venetoclax), IgHV mutation
Provider: Northwell Health (NYC)
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James Berenson, MD
Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Institution: Berenson Cancer Center
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