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

Upcoming Lymphoma Programs

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

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



Symptoms: No noticeable initial symptoms; persistent, significant back pain
Treatments:Surgery (removal of spinal tumor) chemotherapy (R-CHOP)

Don S., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)



Symptoms: Weight loss, fatigue, enlarged lymph nodes
Treatments: Chemotherapy, radiation, immunotherapy (epcoritamab)

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)

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



Symptoms: Blood in urine
Treatment: Surgery, chemotherapy (R-CHOP), radiation

Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)

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, Non-Hodgkin Lymphoma Diagnosis: Stage 4B Waldenström Macroglobulinemia Non-Hodgkin Lymphoma Symptoms: Nosebleeds, fatigue, fainting, bruises, hair loss Treatment: Chemotherapy, R-CHOP, Rituximab
...

Pete D., Waldenstrom Macroglobulinemia



1st Symptom: Irregular blood test results during a regular workup for Crohn’s
Treatment: Chemotherapy, surgery, radiation, monthly IVIG
...

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)
...

Cindy S., Waldenstrom Macroglobulinemia



Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Hyperproteinemia
Treatment: Chemotherapy
...

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
...

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.
...

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.
...

Rafael Fonseca, MD



Role: Interim executive director, hematologist-oncologist
Focus: Multiple myeloma, new drug development
Institution: Mayo Clinic
...

Farrukh Awan, MD



Role:Hematologist-oncologist, associate professor
Focus:Leukemias, Lymphomas, BMT
Institution:UT Southwestern
...

Nina Shah, MD



Role: Hematologist-oncologist, researcher
Focus: Multiple Myeloma
Institution: University of California, San Francisco (UCSF)
...