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
Now On Demand – Latest Treatments
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 Lymphoma/Chronic Lymphocytic Leukemia (SLL/CLL)
•Waldenstrom Macroglobulinemia
Patient Stories of Non-Hodgkin Lymphoma Diagnosis
B-Cell Lymphomas
Diffuse Large B-Cell Lymphoma
Jim Z., Diffuse Large B-Cell Lymphoma (DLBCL)
Symptoms: Sudden and severe head and neck swelling, purplish facial discoloration, bulging neck veins
Treatments: Surgery (resection and reconstruction of the superior vena cava), chemotherapy
Nolan W., T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL), Stage 4
Symptoms: Debilitating fatigue, flu-like symptoms without a fever, swollen lymph node under the left arm
Treatments: Chemotherapy (R-EPOCH & RICE), bone marrow transplant
Mike E., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptom: Persistent, significant back pain
Treatments: Surgery, chemotherapy
Don S., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)
Symptoms: Weight loss, fatigue, enlarged lymph nodes
Treatments: Chemotherapy, radiation, immunotherapy (epcoritamab)
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Primary Mediastinal B-Cell Lymphoma (PMBCL)
Lauren D., Primary Mediastinal (PMBCL)
Symptoms: Dry cough, extreme fatigue, trouble breathing, swollen and discolored left arm, lump under the arm
Treatment: Chemotherapy
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
Stephanie V., Primary Mediastinal (PMBCL), Stage 4
Symptoms: Asthma/allergy-like symptoms, lungs felt itchy, shortness of breath, persistent coughing
Treatments: Pigtail catheter for pleural drainage, video-assisted thoracoscopic surgery (VATS), R-EPOCH 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.
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Mantle Cell Lymphoma (MCL)
Cherylinn N., Mantle Cell Lymphoma (MCL), Stage 4
Symptom: None
Treatments: R-CHOP chemotherapy, rituximab
Stephanie R., Mantle Cell Lymphoma (MCL), Stage 4
Symptom: Elevated white blood cell count
Treatment: 6 months of rituximab + ibrutinib, 4 cycles of hyper-CVAD chemotherapy
Jason W., Mantle Cell Lymphoma (MCL), Stage 4
Symptoms: Hives, inflamed arms
Treatments: Calabrutinib, Lenalidomide, Rituxan
Bobby J., Mantle Cell Lymphoma (MCL), Stage 4
Symptoms: Fatigue, enlarged lymph nodes
Treatments:Clinical trial of ibrutinib + rituximab, consolidated chemo of 4 cycles of Hyper-CVAD
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Burkitt Lymphoma
Ashlee K., Burkitt Lymphoma, Stage 4
Symptoms: Abdominal pain, night sweats, visible mass in the abdomen
Treatments: Surgery (partial colectomy to removed 14 inches of intestine), chemotherapy
Emily S., Burkitt Non-Hodgkin Lymphoma, Stage 4
Initial Symptoms: Constant fatigue, tongue deviated to the left, abscess in right breast, petechiae on legs, night sweats, nausea and vomiting, persistent cough
Treatment: Chemotherapy, stem cell transplant, immunotherapy
Erin R., Diffuse Large B-Cell Lymphoma (DLBCL) & Burkitt Lymphoma, Stage 4
Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatments: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
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Follicular Lymphoma
Hayley H., Follicular Lymphoma, Stage 3B
Symptoms: Intermittent feeling of pressure above clavicle, appearance of lumps on the neck, mild wheeze when breathing and seated in a certain position
Treatments: Surgery, chemotherapy
Laurie A., Follicular Non-Hodgkin Lymphoma, Stage 4
Symptoms: Frequent sinus infections, dry right eye, fatigue, lump in abdomen
Treatments: Chemotherapy, targeted therapy, radioimmunotherapy
Courtney L., Follicular Lymphoma, Stage 3B
Symptoms: Intermittent back pain, sinus issues, hearing loss, swollen lymph node in neck, difficulty breathing
Treatment: Chemotherapy
John S., Follicular Lymphoma, Stage 4
Symptom: Swollen lymph nodes
Treatments: Clinical trial, chemotherapy
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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
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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.
Nadia K., Small Lymphocytic Lymphoma (SLL)
1st Symptoms: Rash, lump under arm, fatigue
Treatment: Ibrutinib and acalabrutinib
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Waldenstrom Macroglobulinemia
Kay, Waldenstrom Macroglobulinemia Symptoms: Nosebleeds, fatigue, fainting, bruises, hair loss Treatments: Chemotherapy (R-CHOP), Rituximab
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Pete D., Waldenstrom Macroglobulinemia
Symptom: Irregular blood test results during a regular workup for Crohn’s
Treatments: Chemotherapy, surgery, radiation, monthly IVIG
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Sheree N., Waldenstrom Macroglobulinemia
Symptom: Feeling anemic
Treatment: Chemotherapy (bendamustine & rituximab)
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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)
Harjeet K., Subcutaneous Panniculitis-like T-Cell-Lymphoma (SPTCL), Stage 4
Symptoms: Persistent, high fevers; red, tender rashes on legs
Treatments: High-dose chemotherapy, allogeneic stem cell transplant
Hematologists & Experts
Advances in GVHD Treatments and Clinical Trials
Hematologist-oncologists Dr. Satyajit Kosuri and Dr. Shernan Holtan, patient advocate Meredith Cowden, and LLS clinical trial nurse navigator Ashley Giacobbi discuss the role clinical trials play in advancing the GVHD treatment landscape.
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Accessing the Best Care for You or a Loved One: Understanding New Options for Non-Hodgkin Lymphoma
Dr. Kulsum Bano, Dr. Nilanjan Ghosh, and Dr. Justin Favaro discuss the latest advances with 3-time DLBCL survivor and patient advocate Dr. Robyn Stacy-Humphries.
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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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