Non-Hodgkin Lymphoma Stories – Symptoms, Diagnosis, Treatment

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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

Diffuse Large B-Cell Lymphoma
CAR T-Cell Therapy for Refractory Non-Hodgkin Lymphoma | Shahzad’s Story

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
Non-Hodgkin Lymphoma Story: Diffuse Large B-Cell, Stage 4 | Emily’s Story

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)
Non-Hodgkin Lymphoma: Primary Mediastinal | Arielle’s Story

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
Non-Hodgkin Lymphoma: Primary Mediastinal, Stage 1 | Keyla’s Story

Keyla Scrogham, Primary Mediastinal (PMBCL), Stage 1



1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
Non-Hodgkin Lymphoma: Primary Mediastinal, Stage 1-2 | Donna’s Story

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
Non-Hodgkin Lymphoma: Primary Mediastinal, Stage 2 | Patrick’s Story

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
Non-Hodgkin Lymphoma, Primary Mediastinal B-Cell, Stage 2 | Crystal’s Story

Crystal Zunino, Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy
Non-Hodgkin Lymphoma: Primary Mediastinal B-Cell Lymphoma, Double Expressors | Stephanie’s Story

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
Non-Hodgkin Lymphoma: Primary Mediastinal B-Cell Lymphoma, Relapsed, CAR T-Cell Therapy | Sonia’s Story

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
Non-Hodgkin Lymphoma: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 4 | Mags’ Story

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)
Anaplastic Large Cell Lymphoma (ALCL) | Brianna’s Story

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
Non-Hodgkin Lymphoma Story: Diffuse Large B-Cell & Burkitt Lymphoma | Erin’s Story

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)
Non-Hodgkin Lymphoma: Marginal Zone Lymphoma (MZL), Gastric MALT | Rachel’s Story

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)
Chronic Lymphocytic Leukemia (CLL) | Sean’s Story

Sean Roberts, Chronic Lymphocytic Leukemia (CLL)



1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax
Non-Hodgkin Lymphoma: Chronic Lymphocytic Leukemia (CLL) | Lacey’s Story

Lacey Buchorn, Chronic Lymphocytic Leukemia (CLL)




1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R
Chronic Lymphocytic Leukemia (CLL) | Tony’s Story

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
Non-Hodgkin Lymphoma: Waldenstrom Macroglobulinemia | Cindy’s Story

Cindy Shubert, Waldenstrom Macroglobulinemia



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

Hematologists & Experts

Blood Cancer Oncologist / Hematologist (Leukemia, Lymphoma, Multiple Myeloma) | Dr. Babis Andreadis

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
Ask An Oncologist: Multiple Myeloma | Dr. James Berenson, M.D.

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
Chronic Lymphocytic Leukemia Specialist | Dr. Barrientos

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
Ask A Myeloma Specialist | Dr. Rafael Fonseca, M.D. | Basics, Clinical Trials, Selinexor, Darzalex

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
Ask A Multiple Myeloma Hematologist-Oncologist: MGUS, Smolder Myeloma, Early Screening, Clinical Trials | Dr. Irene Ghobrial, M.D.

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
Ask A CLL/SLL Specialist – CAR T, Acalabrutinib, Ibrutinib, Idelalisib, Venetoclax | Dr. Tim Fenske, M.D., M.S.

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

More Stories and Information

Non-Hodgkin General Info
Lymphoma Symptoms
Hodgkin Lymphoma Stories
How I Knew I Had Lymphoma
R-EPOCH Chemotherapy Info