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
Sammie F., Diffuse Large B-Cell Non-Hodgkin Lymphoma (DLBCL) Cancer 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) Cancer Diagnosis: Diffuse Large B-Cell Lymphoma (DLBCL)Symptoms: Fatigue, shortness of breath, swelling, night sweats, anxiety Treatment: Chemotherapy
Jonathan S., Diffuse Large B-Cell (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., Stage 3B Follicular Lymphoma
1st Symptoms: Fatigue, persistent cough
Treatment: R-CHOP chemotherapy, 6 rounds
Paige C., Stage 4 Diffuse Large B-Cell Lymphoma (DLBCL)
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., 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 B., Refractory Diffuse Large B-Cell (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
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.
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)
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
Nicky G. Diagnosis: Follicular LymphomaSymptoms: Fatigue, weight loss, lumps in the neck and groin Treatment: Quarterly infusions of rituximab, radioactive iodine 131 infusion, platelet transfusionn
Kim S., Follicular Lymphoma, Stage 4
1st Symptoms: Stomach pain
Treatment:Chemotherapy (rituximab & bendamustine), rituximab for 2 additional years
Marginal Zone Lymphoma (MZL)
The Importance of Positive Role Models
The example that Nick's father set for him as he was growing up taught him how to prioritize and advocate for his health.
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.
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Read how physical activity can play a crucial role in enhancing overall well-being
Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids
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
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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