Non Hodgkin’s Lymphoma Stories: Patients Describe First Symptoms, Diagnosis, Treatment

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

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Patient Stories


Patient Stories

B-Cell Lymphomas

Diffuse Large B-Cell Lymphoma
CAR T-Cell Therapy Stories: Refractory Non-Hodgkin Lymphoma, Diffuse Large B-Cell Lymphoma (DLBCL)| 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’s Lymphoma Stories: Diffuse Large B-Cell (DLBCL) & Burkitt Lymphoma, Stage 4 | Erin Richter

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)
Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell (DLBCL), Stage 4 | Emily Gibson

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’s Lymphoma Stories: Primary Mediastinal (PMBCL), Diffuse Large B-Cell Lymphoma| Arielle Rosen

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’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 1 | Keyla Scrogham

Keyla Scrogham, Primary Mediastinal (PMBCL), Stage 1



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

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’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 2 | Patrick Mulick

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’s Lymphoma Stories: Primary Mediastinal B-Cell (PMBCL), Stage 2 | Crystal Zunino

Crystal Zunino, Primary Mediastinal (PMBCL), Stage 2



1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma, Stage 3 | Stephanie Chuang

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’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Relapsed, CAR T-Cell Therapy | Sonia Su

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’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 4 | Mags Bujalski

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)
Mantle Cell Lymphoma Stories: MCL, Stage 2, Non-Hodgkin’s Lymphoma | Tim Holyoake

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
Mantle Cell Lymphoma Stories: Stage 4, Non-Hodgkin’s Lymphoma| Sheryl’s Story

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
Mantle Cell Lymphoma Stories: Stage 4, Non-Hodgkin’s Lymphoma | Shari Bernhard

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)
Mantle Cell Lymphoma Stories: Stage 4, Non-Hodgkin’s Lymphoma, Clinical Trial | Bobby Jones

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
Mantle Cell Lymphoma Stories: Stage 4 MCL, Non-Hodgkin’s Lymphoma | Candy Whitbeck

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

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)
Non-Hodgkin’s Lymphoma Stories: Chronic Lymphocytic Leukemia (CLL), Clinical Trial | Sean Roberts

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 Stories: Chronic Lymphocytic Leukemia (CLL) | The Patient Story

Lacey Buchorn, Chronic Lymphocytic Leukemia (CLL)




1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R
Chronic Lymphocytic Leukemia (CLL) Stories, Non-Hodgkin’s Lymphoma| Tony Donk

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
Non-Hodgkin Lymphoma Stories: Waldenstrom Macroglobulinemia (WM)| Sheree Nielsen

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)
...
Non-Hodgkin’s Lymphoma Stories: Waldenstrom Macroglobulinemia (WM)| Cindy Shubert

Cindy Shubert, 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.

Non-Hodgkin’s Lymphoma Stories: Anaplastic Large Cell Lymphoma (ALCL), T-Cell, ALK+, Stage 2 | Brianna Banachoski

Brianna Banachoski, Anaplastic Large Cell Lymphoma (ALCL)



1st Symptoms: Infections, inflammation, high fever, swelling, abdominal pain
Treatment: Chemo, radiation
...
Subcutaneous Panniculitis-like T-Cell Lymphoma (SPTCL)
Non-Hodgkin Lymphoma Stories: Niki Kaur, Stage 4 Skin Lymphoma, Subcutaneous Panniculitis-Like T-Cell Lymphoma (SPTCL), Rare Cancer | The Patient Story

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

Lymphoma, Leukemia, Myeloma Doctor, Hematologist Oncologist: Dr. Babis Andreadis | The Patient Story

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
Myeloma Doctor, James Berenson, Oncologist | The Patient Story

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
CLL Doctor (Chronic Lymphocytic Leukemia) Dr. Jacqueline Barrientos, Oncologist

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)
Hematologist-Oncologist, Dr. Edmund Tai: Multicultural Patients | The Patient Story

Dr. Edmund Tai, M.D.



Role: General oncologist, hematologist
Focus: Specialist in treating Chinese-speaking patients
Provider: Sutter Health (Bay Area, CA)
Myeloma Expert, Hematologist-Oncologist, Clinical Trials: Dr. Rafael Fonseca | The Patient Story

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
Myeloma Doctor, Hematologist-Oncologist, Clinical Trials: Dr. Irene Ghobrial | The Patient Story

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)
CLL/SLL Specialist – CAR T, Acalabrutinib, Ibrutinib, Idelalisib, Venetoclax: Dr. Tim Fenske

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
Cancer Clinical Trials, CAR T-Cell Therapy, Bone Marrow Transplants, GVHD | Dr. David Miklos

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