Diffuse Large B-Cell Lymphoma (DLBCL) Patient Stories
Diffuse large b-cell lymphoma (DLBCL) is a common subtype of b-cell non-Hodgkin’s lymphoma, and is usually an aggressive cancer, one that progresses quickly.
Explore below to hear DLBCL patient stories and experiences. Our community members share their first symptoms of non-Hodgkin’s lymphoma, how they made treatment decisions, their entire treatment experience, recovery, and navigating quality of life issues.
DLBCL General Information
First Symptoms
Commonly reported first symptoms of non-Hodgkin’s lymphoma in general include, but are not limited to:
- Swollen or enlarged lymph nodes
- Sudden and/or acute weight loss
- Appetite loss
- Night sweats
- Extreme fatigue
- Fever
- Unexplained itchiness
Patient Stories on Symptoms
How I Knew I Had Non-Hodgkin’s Lymphoma
Explore patient stories on the first signs they knew something was wrong.
Treatment
The most common treatment for DLBCL is a four-drug chemotherapy regimen, known as CHOP:
- C – Cyclophosphamide
- H – Doxorubicin Hydroxydaunomycin
- O – Vincristine Sulfate (Onvocin)
- P – Prednisone
Oftentimes, it’s combined with a monoclonal antibody known as rituximab or Ritxuan, known altogether as R-CHOP.
One alternative chemo regimen is dose-adjusted or DA-R-EPOCH:
- R – Rituximab
- E – Etoposide Phosphate
- P – Prednisone
- O – Vincristine Sulfate (Oncovin)
- C – Cyclophosphamide
- H – Doxorubicin Hydrochloride (Hydroxydaunorubicin)
Patient Stories on Treatments
Hear from patients on their R-EPOCH chemotherapy regimen experiences.
DLBCL Patient Stories
Hear From DLBCL Patients
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)
Tony W., Relapsed T-Cell/Histiocyte-Rich Large B-Cell Lymphoma (T/HRBCL)
1st Symptoms: A lot of effort needed cycling, body wasn’t responding the same; leg swelling
Treatment: R-CHOP chemotherapy, CAR T-cell therapy
Jonathan S., Diffuse Large B-Cell (DLBCL), Stage 4
1st Symptoms: Severe shoulder pain
Treatment: 6 rounds of R-CHOP chemotherapy, 10 rounds of methotrexate, 12 rounds of focal radiation, autologous stem cell transplant
Leanne T., Follicular Lymphoma Transformed to DLBCL, Stage 3B
1st Symptoms: Fatigue, persistent cough
Treatment: R-CHOP chemotherapy, 6 rounds
Paige C., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
Symptoms: Weight loss, extreme fatigue, swollen lymph nodes in the neck
Treatment: R-EPOCH chemotherapy
Stephanie Chuang
Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
Kris W., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
1st Symptoms: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy
Robyn S., Relapsed Diffuse Large B-Cell Lymphoma (DLBCL), Stage 2E
Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: R-CHOP, R-ICE, intrathecal, BEAM; autologous stem cell transplant, head and neck radiation, CAR T-cell therapy
Barbara R., Diffuse Large B-Cell (DLBCL), Stage 4
1st Symptoms: Abdomen and gastric pain
Treatment: Chemotherapy R-CHOP, CAR T-cell therapy, study drug CYT-0851
Luis V., Diffuse Large B-Cell (DLBCL), Stage 4
1st Symptoms: Persistent cough, fatigue, unexplained weight loss
Treatment: Chemotherapy R-CHOP and methotrexate
Nina L., Diffuse Large B-Cell (DLBCL), Stage 4
1st Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy R-CHOP
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
Shahzad B., Refractory Diffuse Large B-Cell (DLBCL), 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 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)
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)
Quality of Life Topics
Fertility Preservation
Fertility preservation is not always an option for cancer patients, but when treatments like chemotherapies are involved, our community members recommend that you ask about it. This includes procedures like egg retrieval and freezing, as well as sperm banking.
Exercise for DLBCL Management: Expert Insights from Dr. Joshua Brody
Dive into the valuable benefits of exercise for DLBCL patients and provide practical tips to help integrate physical activity into your daily life.
Fertility Preservation & Cancer Treatments
Read patient stories on how they approached fertility preservation after a cancer diagnosis.
Patient Details Egg Retrieval Before Cancer Treatment
A detailed look at the egg harvesting and retrieval from a cancer patient who went through the process before starting chemotherapy.
Hair loss
Hair loss, often experienced after chemotherapy, is one of the first things that comes to mind for many patients when they first hear a cancer diagnosis.
Patients describe on how they managed through losing their hair after cancer treatments.
Financial toxicity
Trying to deal with a cancer diagnosis is overwhelming enough, but for many patients and their families, there’s the added stress of trying to figure out how to pay for cancer treatment.
Details on how Medicare can help cover (some) cancer-related costs.
Guidance From Experienced Hospital Social Worker
Hear more from an expert on how patients and caregivers can approach issues like insurance and paying for treatment.
Dealing with emotional and mental stress
Scanxiety: Waiting For Test Results
Read how patients worked through the anxiety of waiting for results from tests and scans, known as “scanxiety.”
Leaving the Hospital: Emotions & Support
Read on for answers from real cancer patients about how can you navigate the feelings that come along with hospital stays.