Non Hodgkin’s Lymphoma Stories
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
Patient Stories
Patient Stories
B-Cell Lymphomas
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
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)
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
Mantle Cell Lymphoma (MCL)
Tim Holyoake, 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 Brian, 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 Bernhard, 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 Jones, 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
Candy Whitbeck, Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms: Bump in back of head, extreme fatigue, acute weight loss
Treatment: 6 cycles bendamustine & rituximab (Rituxan), BEAM chemo before autologous stem cell transplant, 2 years maintenance chemo (Rituxan)
Burkitt Lymphoma
No post found
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
Waldenstrom Macroglobulinemia
Sheree Nielsen, Waldenstrom Macroglobulinemia
Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: Feeling anemic
Treatment: Chemotherapy (bendamustine and rituximab)
...
Cindy Shubert, Waldenstrom Macroglobulinemia
Cancer details: Only ~1000-1500 new cases in the US each year
1st Symptoms: 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 Banachoski, 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)
Niki Kaur, Subcutaneous Panniculitis-like T-Cell-Lymphoma (SPTCL), Stage 4
1st Symptoms: Persistent, high fevers; red, tender rashes on legs
Treatment: 12 cycles high-dose chemotherapy, allogeneic stem cell transplant
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, M.D.
Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), lymphoma, 17p Deletion (Ibrutinib, Acalabrutinib, Venetoclax), IgHV mutation
Provider: Northwell Health (NYC)
Dr. Edmund Tai, M.D.
Role: General oncologist, hematologist
Focus: Specialist in treating Chinese-speaking patients
Provider: Sutter Health (Bay Area, CA)
Dr. Rafael Fonseca, M.D.
Role: Consultant, Division of Hematology/Oncology; Dept. Chair, Internal Medicine; professor of medicine
Focus: Myeloma; defining sub-type distinctions | Clinical Trials, Selinexor, Darzalex
Provider: Mayo Clinic
Dr. Irene Ghobrial, MD
Role: Clinical investigator and professor of hematological oncology
Focus: Multiple myeloma, Waldenström’s Macroglobulinemia, early screening, clinical trials
Provider:Dana-Farber Cancer Institute (Boston)
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
Dr. David Miklos
Role: Chief of BMT & Cell Therapy, Clinical Director of immunotherapy program
Focus: Blood cancers (lymphoma, leukemia, myeloma), CAR T-cell therapy, blood and marrow transplantation
Provider: Stanford Medical