Non Hodgkin Lymphoma Diagnosis | The Patient Story

Non Hodgkin Lymphoma Diagnosis

Patients Share 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

Patient Stories


Patient Stories of Non-Hodgkin Lymphoma Diagnosis

B-Cell Lymphomas

Diffuse Large B-Cell Lymphoma
Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell Lymphoma | The Patient Story

Nina L., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy R-CHOP
Lymphoma Diagnosis Stories | The Patient Story

Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL



1st Symptoms of relapse: Swelling in leg, leg edema Treatment:1st line - R-CHOP chemotherapy, 2nd line - clinical trial of venetoclax-selinexor
CAR T-Cell Therapy Stories: Refractory Non-Hodgkin Lymphoma, Diffuse Large B-Cell Lymphoma

Shahzad'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 & Burkitt Lymphoma, High-Grade B-Cell Lymphoma, Stage 4

Erin R., 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 G., 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)

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
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 1

Keyla S., 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 (PMBCL), Stage 1 to 2

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
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 2

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
Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell (PMBCL), Stage 2

Crystal Z., 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, Double Expressor | Stephanie Chuang

Stephanie C., 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, Relapsed, CAR T-Cell Therapy

Sonia S., 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’ Story

Mags B., 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’s Story

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

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

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

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

Candy W., 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

Follicular Lymphoma
Follicular Lymphoma Stories: Non-Hodgkin’s Lymphoma, B-Cell, Stage 4 | Kim’s Story

Kim S., Follicular Lymphoma, Stage 4



1st Symptoms: Stomach pain
Treatment:Chemotherapy (rituximab & bendamustine), rituximab for 2 additional years
Marginal Zone Lymphoma (MZL)
Non-Hodgkin’s Lymphoma Stories: Marginal Zone Lymphoma (MZL) | Kimberly’s Story

Kimberly O., Marginal Zone Lymphoma



1st Symptoms:None at first, routine blood work showed suspicious results, bad nosebleed
Treatment: Chemotherapy (bendamustine & rituximab)
Non-Hodgkin’s Lymphoma Stories: Marginal Zone Lymphoma (MZL), Gastric MALT

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.

CLL Treatments | The Patient Story
Explore the latest in chronic lymphocytic leukemia CLL treatments and research from top specialists in the field.
Non-Hodgkin’s Lymphoma Stories: Chronic Lymphocytic Leukemia (CLL), Clinical Trial

Sean R., 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) | Lacey’s Patient Story

Lacey B., 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’s Patient Story

Tony D., 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’s Story

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

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.

Non-Hodgkin’s Lymphoma Stories: Anaplastic Large Cell Lymphoma, T-Cell, ALK+, Stage 2

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)
Non-Hodgkin Lymphoma Stories: Stage 4 Skin Lymphoma, Subcutaneous Panniculitis-Like T-Cell Lymphoma

Niki K., 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, Leukemia, Lymphoma | The Patient Story

Babis Andreadis, MD



Oncologist: Specializing in blood cancers like lymphoma, leukemia, and multiple myeloma
Experience: 20+ years
Institution: Univ. of California, San Francisco (UCSF)
Dr. James Berenson, Multiple Myeloma| The Patient Story

James Berenson, MD



Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Institution: Berenson Cancer Center
Dr. Jacqueline Barrientos, CLL | The Patient Story

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, Dr. Rafael Fonseca | The Patient Story

Rafael Fonseca, MD



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, Multiple Myeloma Specialist | 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 Treatment: Dr. Tim Fenske | The Patient Story

Tim Fenske, MD, MS



Role: Hematologist-Oncologist
Focus: chronic lymphocytic leukemia (CLL) & leukemia and lymphoma | CAR T, targeted therapy
Provider: Medical College of Wisconsin
Clinical Trials, CAR T, BMT: Dr. David Miklos | The Patient Story

David Miklos, MD



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
Dr. Kerry Rogers, CLL | The Patient Story

Kerry Rogers, MD



Role: Hematologist, researcher
Focus: Chronic lymphocytic leukemia (CLL), Hairy Cell Leukemia (HCL)
Institution: OSUCCC-The James
Dr. Nina Shah, Multiple Myeloma | The Patient Story

Nina Shah, MD



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