Non-Hodgkin Lymphoma Stories
Patients Share Stories of 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
Upcoming Lymphoma Programs
Patient Stories
→ B-Cell Lymphoma Patient Stories
• Burkitt Lymphoma
• Diffuse Large B-Cell Lymphoma (DLBCL)
• Follicular Lymphoma
• Mantle Cell Lymphoma (MCL)
• Marginal Zone Lymphoma (MZL)
• Primary Mediastinal B-Cell Lymphoma (PMBCL)
• Small Lymphocytic Leukemia/Chronic Lymphocytic Leukemia (SLL/CLL)
•Waldenstrom Macroglobulinemia
Patient Stories of Non-Hodgkin Lymphoma Diagnosis
B-Cell Lymphomas
Diffuse Large B-Cell Lymphoma
Mike E., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: No noticeable initial symptoms; persistent, significant back pain
Treatments:Surgery (removal of spinal tumor) chemotherapy (R-CHOP)
Don S., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)
Symptoms: Weight loss, fatigue, enlarged lymph nodes
Treatments: Chemotherapy, radiation, immunotherapy (epcoritamab)
Michael E., Relapsed Diffuse Large B-cell Lymphoma (DLBCL)
Symptoms: Back & leg pain, rash, severe itching, decreased appetite, weight loss
Treatments: Chemotherapy, CAR T-cell therapy, clinical trial (no improvement from study drug), immunotherapy (epcoritamab)
Lena V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 1
Symptoms: Blood in urine
Treatment: Surgery, chemotherapy (R-CHOP), radiation
Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)
Primary Mediastinal B-Cell Lymphoma (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
Keyla S., Primary Mediastinal (PMBCL), Stage 1
1st Symptoms: Bad cough, slight trouble breathing
Treatment: R-EPOCH (dose-adjusted) chemotherapy, 6 cycles
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
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
Crystal Z., Primary Mediastinal (PMBCL), Stage 2
1st Symptoms: Chest pain
Treatment: 6 cycles of R-CHOP chemotherapy
Mantle Cell Lymphoma (MCL)
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
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
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)
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
Jason W., Mantle Cell Lymphoma (MCL), Stage 4
1st Symptoms: Hives, inflamed arms
Treatment: Calabrutinib, Lenalidomide, Rituxan
Burkitt Lymphoma
No post found
Follicular Lymphoma
Symptoms: Fatigue, weight loss, lumps in the neck and groin
Treatments: Quarterly infusions of rituximab, radioactive iodine 131 infusion, platelet transfusion
Kim S., Follicular Lymphoma, Stage 4
Symptom: Stomach pain
Treatments: Chemotherapy (rituximab & bendamustine), immunotherapy (rituximab for 2 additional years)
Marginal Zone Lymphoma (MZL)
The Importance of Positive Role Models
The example that Nick's father set for him as he was growing up taught him how to prioritize and advocate for his health.
Nick M., Nodal Marginal Zone Lymphoma
1st Symptoms: Daily hives, GI issues, weight loss, heart issues, night sweats
Treatment: Rituxan (rituximab) and high-dose steroids
Kimberly O., Marginal Zone Lymphoma
1st Symptoms: None at first, routine blood work showed suspicious results, bad nosebleed
Treatment: Chemotherapy (bendamustine & rituximab)
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.
Waldenstrom Macroglobulinemia
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Pete D., Waldenstrom Macroglobulinemia
1st Symptom: Irregular blood test results during a regular workup for Crohn’s
Treatment: Chemotherapy, surgery, radiation, monthly IVIG
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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)
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Cindy S., 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 B., 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)
Harjeet K., Subcutaneous Panniculitis-like T-Cell-Lymphoma (SPTCL), Stage 4
Symptoms: Persistent, high fevers; red, tender rashes on legs
Treatment: 12 cycles high-dose chemotherapy, allogeneic stem cell transplant
Hematologists & Experts
Advances in GVHD Treatments and Clinical Trials
Hematologist-oncologists Dr. Satyajit Kosuri and Dr. Shernan Holtan, patient advocate Meredith Cowden, and LLS clinical trial nurse navigator Ashley Giacobbi discuss the role clinical trials play in advancing the GVHD treatment landscape.
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Accessing the Best Care for You or a Loved One: Understanding New Options for Non-Hodgkin Lymphoma
Dr. Kulsum Bano, Dr. Nilanjan Ghosh, and Dr. Justin Favaro discuss the latest advances with 3-time DLBCL survivor and patient advocate Dr. Robyn Stacy-Humphries.
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Rafael Fonseca, MD
Role: Interim executive director, hematologist-oncologist
Focus: Multiple myeloma, new drug development
Institution: Mayo Clinic
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Farrukh Awan, MD
Role:Hematologist-oncologist, associate professor
Focus:Leukemias, Lymphomas, BMT
Institution:UT Southwestern
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Nina Shah, MD
Role: Hematologist-oncologist, researcher
Focus: Multiple Myeloma
Institution: University of California, San Francisco (UCSF)
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