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Non-Hodgkin Lymphoma Stories
Symptoms, Diagnosis, Treatment
Non-Hodgkin Lymphoma is a cancer that develops in the body’s lymphatic system, which is part of our immune system. It’s one of two main types of lymphoma (the other is Hodgkin lymphoma).
Most cases are B-cell types, the others are T-cell, but many find the two main categories are: aggressive and indolent (slow-growing).
Explore below for stories from real patients about their journey battling non-Hodgkin lymphoma from symptoms, diagnosis (or misdiagnosis), treatment through the day-to-day experiences. You can also hear from a blood cancer specialist.
- Aggressive Types
- Indolent (Slow-Growing) Types
- Marginal Zone Lymphoma (MZL)
- Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia (SLL/CLL)
- Lymphoplasmacytic Lymphoma/Waldenstrom Macroglobulinemia
- Hematologists & Experts
- More Stories and Information
Aggressive Types
Diffuse Large B-Cell Lymphoma
Shahzad Bhat's CAR T Story
Cancer details: Refractory non-Hodgkin lymphoma, 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
Emily Gibson, 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 Rosen, 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 Scrogham, Primary Mediastinal (PMBCL), Stage 1
1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Donna Sadeghi, 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 Mulick. 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 Zunino, Primary Mediastinal (PMBCL), Stage 2
1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy
Stephanie Chuang, 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 Su, 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 Bujalski, 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
Anaplastic Large Cell Lymphoma (ALCL)
Brianna Banachoski, Anaplastic Large Cell Lymphoma (ALCL)
1st Symptoms: Infections, inflammation, high fever, swelling, abdominal pain
Treatment: Chemo, radiation
“Combination”
Diffuse Large B-Cell & Burkitt Lymphoma
Erin Richter, 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)
Indolent (Slow-Growing) Types
Marginal Zone Lymphoma (MZL)
Rachel Posell, Marginal Zone Lymphoma, Gastric MALT
1st Symptoms: Fatigue, bloating, stomach pain
Treatment: Chemotherapy, targeted therapy, surgery
Small Lymphocytic Lymphoma/Chronic Lymphocytic Leukemia (SLL/CLL)
Sean Roberts, Chronic Lymphocytic Leukemia (CLL)
1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax
Lacey Buchorn, Chronic Lymphocytic Leukemia (CLL)
1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R
Tony Donk, Chronic Lymphocytic Leukemia (CLL)
Cancer details: ~25% of new cases of leukemia, also classified as non-Hodgkin lymphoma (slow-growing)
1st Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: Chemo pill (Imbruvica), takes 3 pills a night
Lymphoplasmacytic Lymphoma/Waldenstrom Macroglobulinemia
Cindy Shubert, Waldenstrom Macroglobulinemia
Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Hyperproteinemia
Treatment: Chemotherapy
Hematologists & Experts
Dr. Babis Andreadis, Blood Cancer Specialist
Oncologist: Specializing in blood cancers like lymphoma, leukemia, and multiple myeloma
Experience: 20+ years
Hospital/clinic size: Large teaching institution
Dr. James Berenson, Multiple Myeloma Specialist
Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Hospital/clinic size: Large private practice
Dr. Jacqueline Barrientos, CLL Specialist
Oncologist: Specializing in chronic lymphocytic leukemia (CLL) | 17p Deletion (Ibrutinib, Acalabrutinib, Venetoclax), IgHV mutation
Experience: ~15 years
Hospital/clinic size: Large institution
Dr. Rafael Fonseca, Myeloma Specialist
Hematologist: Specializing in the diagnosis and treatment of myeloma; defining sub-type distinctions | Clinical Trials, Selinexor, Darzalex
Experience: 25+ years
Hospital/clinic size: Large institution
Dr. Irene Ghobrial, Blood Cancer Oncologist
Oncologist: Clinical investigator and professor of hematological oncology | MGUS, Smolder Myeloma, Early Screening, Clinical Trials
Experience: ~15 years
Hospital/clinic size: Large institution
Dr. Tim Fenske, Leukemia & Lymphoma Specialist
Oncologist: Specializing in chronic lymphocytic leukemia (CLL) & other leukemia and lymphoma | CAR T, Acalabrutinib, Ibrutinib, Idelalisib, Venetoclax
Experience: ~15 years
Hospital/clinic size: Mid-sized institution