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

Tony W., Relapsed T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL)

Symptoms: A lot of effort needed cycling, body wasn’t responding the same; leg swelling
Treatments: R-CHOP chemotherapy, CAR T-cell therapy

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.

Shahzad B., Refractory Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Extreme fatigue
Treatment: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)

Sammie F., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Chest pain, back pain, bump on neck, night sweats Treatment: Chemotherapy, CAR T-Cell therapy

Robyn S., Relapsed Diffuse Large B-Cell Lymphoma (DLBCL), Stage 2E



Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: R-CHOP, R-ICE, intrathecal, BEAM; autologous stem cell transplant, head and neck radiation, CAR T-cell therapy

Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL



Relapse Symptoms Swelling in leg, leg edema Treatment: R-CHOP chemotherapy, clinical trial (venetoclax-selinexor)

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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

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

Burkitt Lymphoma

Follicular Lymphoma

David K., Follicular Lymphoma, Stage 4 Symptoms: Sharp abdominal pains, frequently sick, less stamina Treatments: Chemotherapy (R-CHOP), immunotherapy (rituximab), radiation, clinical trial (bendamustine), autologous stem cell transplant

Nicky G., Follicular Lymphoma, Stage 4
Symptoms: Fatigue, weight loss, lumps in the neck and groin

Treatments: Quarterly infusions of rituximab, radioactive iodine 131 infusion, platelet transfusion

Kim S., Follicular Lymphoma, Stage 4



Symptom: Stomach pain
Treatments: Chemotherapy (rituximab & bendamustine), immunotherapy (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.

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 SchorrDiagnosis: 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
Treatment: 12 cycles 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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