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

Follicular Lymphoma 360: The Latest Treatment Options For Me

Hosted by The Patient Story Team

Discover the latest in treatment options for relapsed/refractory follicular lymphoma from leading experts. This insightful webinar covers everything from the nature of the disease to innovative therapies and patient support. Don’t miss this opportunity to learn and connect with those at the forefront of lymphoma care.

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Patient Stories

Patient Stories of Non-Hodgkin Lymphoma Diagnosis

B-Cell Lymphomas

Diffuse Large B-Cell Lymphoma

Michael E., Relapsed Diffuse Large B-Cell Lymphoma (DLBCL)



Symptoms: Back & leg pain, rash, severe itching, decreased appetite, weight loss
Treatments: Chemotherapy, CAR T-cell therapy, clinical trial (no improvement from study drug), immunotherapy (epcoritamab)

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

Lena V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 1



Symptom: Blood in urine
Treatments: Surgery, chemotherapy (R-CHOP), radiation

Mike E., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Persistent, significant back pain

Treatments: Surgery, chemotherapy

Barbara R., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Abdominal and gastric pain



Treatments: Chemotherapy R-CHOP, CAR T-cell therapy, study drug CYT-0851

Emily G., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Pain in left knee

Treatments: Chemotherapy (R-CHOP and high-dose methotrexate)

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Primary Mediastinal B-Cell Lymphoma (PMBCL)

Arielle R., Primary Mediastinal (PMBCL)



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



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

Donna S., Primary Mediastinal (PMBCL), Stage 1-2



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



Symptom: 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



Symptom: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy

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



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



Symptom: None; lymphoma discovered at unrelated doctor appointment
Treatments: 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



Symptoms: Fatigue, enlarged lymph nodes
Treatments:Clinical trial of ibrutinib + rituximab, consolidated chemo of 4 cycles of Hyper-CVAD

Jason W., Mantle Cell Lymphoma (MCL), Stage 4



Symptoms: Hives, inflamed arms



Treatments: Calabrutinib, Lenalidomide, Rituxan

Burkitt Lymphoma

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

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

Laurie A., Follicular Non-Hodgkin Lymphoma, Stage 4



Symptoms: Frequent sinus infections, dry right eye, fatigue, lump in abdomen

Treatments: Chemotherapy, targeted therapy, radioimmunotherapy

David K., Follicular Lymphoma, Stage 4 Symptoms: Sharp abdominal pains, frequently sick, less stamina Treatments: Chemotherapy, immunotherapy, radiation, clinical trial, autologous stem cell transplant

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.

Cancer Survivorship Care Plan for Hodgkin Lymphoma Patients

Patients and doctors share their real-life colonoscopy experiences

Read how physical activity can play a crucial role in enhancing overall well-being

Andrew Schorr, Chronic Lymphocytic Leukemia & MyelofibrosisDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Lynn B.



1st Symptoms: Prolonged fever and night sweats



Treatment: Rituxan infusion, ibrutinib daily

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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Cindy S., Waldenstrom Macroglobulinemia



Symptom: 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)

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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